A Single Case Study of the Communication Development of a High-risk Neonate, From Birth to Discharge from an NICU 25 A SINGLE CASE STUDY OF THE COMMUNICATION DEVELOPMENT OF A HIGH-RISK NEONATE, FROM BIRTH TO DISCHARGE FROM A NEONATAL INTENSIVE CARE UNIT Alethea Mclnroy and Alta Kritzinger Clinic for High Risk Babies (CHRIB) Centre for Early Intervention in Communication Pathology Department of Communication Pathology University of Pretoria, South Africa ABSTRACT Since preterm and low birth weight infants display a high-risk for communication disorders or delays, the Neonatal Intensive Care Unit (NICU) provides the earliest opportunity where family-centered early communication intervention (ECI) services can be initiated. Exten- sive knowledge about high-risk neonates exists, but there appears to be limited knowledge about the emergence of early communication skills in these neonates. The aim of the study was to provide a systematic description of the successive communication developmental steps of a high-risk neonate on a weekly basis, from birth to discharge from a NICU, in order to guide further research on a larger scale. An Α-type single case study design was used to collect prospective data over 14 sessions during the participant's 51-day stay in the NICU. Using a comprehensive data-collection protocol, rich data sets were gleaned over time. The results are described as a chronology of events contributing to the participant's risk status and influencing his early communication development. The successive emergence of the different components of language skills in the participant provided new insights into the communication development of a preterm neonate and should be further investigated. An ECI programme and guidelines for implementation in the NICU are discussed as a treat- ment option. Key Words: High-risk neonates, neonatal intensive care unit, neonatal communication development, early communication intervention, parent-centered approach INTRODUCTION Preterm and low birth weight neonates demonstrate a high-risk for developmental disorders and more specifically com- munication delays and disorders (Rossetti, 2001). The Neonatal Intensive Care Unit (NICU) provides the earliest opportunity where family-centered early communication intervention (ECI) services can be initiated (Rossetti, 2001). In the South African context where preterm birth and low birth weight are the primary causes of death during the perinatal period (Pattinson, 2002), ini- tiatives.to start ECI from birth onwards are warranted in order to / I minimize the effects of developmental disorders or prevent po- tential communication developmental delays in those infants who survive. J ECI services in the form of developmentally appropriate care have been implemented in the NICU for some years and the efficacy of parent training, staff training and interventions di- rected at the neonates, such as appropriate oral-motor, tactile, vestibular, kinesthetic, visual and auditory stimulation, has been established (Rossetti, 2001). In addition to numerous studies on developmental interventions in the NICU and outcomes of high- risk neonates (Als, 1997; Kritzinger, 1994; Rossetti, 2001) vari- ous theoretical frameworks are offered to describe the neurobe- havioral characteristics and associated environmental factors im- pacting on the high-risk neonate (Als, 1999; Brazelton, 1984; Cioni, Ferrari, Einspieler, Paolicelli, Barbani & Prechtl, 1997; Klaus & Kennell, 2001; Samerhoff & Fiese, 2000; Young, 1997). Despite in-depth descriptions of high-risk neonates, their associated medical conditions and early neurobehavioral devel- opment (Als, 1999; Als, 1997; Rossetti, 2001; Young, 1997), there appears to be limited knowledge of neonatal communica- tion development in the NICU. References to high-risk neonatal communication behaviours are mostly based on typical develop- ment or integrated in descriptions of early mother-infant interac- tion patterns or neurobehavioural development (ASHA, 2004). It appears that no systematic chronology of the earliest communica- tion development of high-risk infants can be found in the litera- ture. An ordered description of the successive communication developmental steps of high-risk neonates in the NICU, may be an important source of information to identify developmentally appropriate intervention needs of the neonate and the family in the NICU. According to Rossetti (2001) regular serial assess- ments of high-risk infants are the only means to describe devel- opmental patterns, to measure developmental rates and change, to identify new problems, to provide information about the effects of intervention and to guide decision making during ECI. Informed decisions regarding developmentally appropriate care options in the NICU require a specialized knowledge base of fetal and newborn brain development, medical conditions of high-risk neonates and the subsequent neuro-developmental se- quelae, different aspects of developmental and neurobehavioural patterns of high-risk neonates, the NICU environment and parent- ing in the NICU (Rossetti, 2001). The preterm neonate is in real- ity a fetus developing in an extra-uterine environment and the demands of this unnatural environment may lead to maladjusted neurobehavioural development in the NICU (Als, 1999). During the critical period of rapid brain development and the develop- ment of other organ systems the preterm infant is exposed to an environment characterized by inappropriate patterns of stimula- tion (Young, 1997), far removed from the dark, peaceful and pro- tected environment of the mother's uterus (Als, 1997). ECI ef- forts in the NICU can therefore only attempt to compensate for the infant's untimely start of extra-uterine communication devel- opment. Birth weight and gestational age are considered the most important indicators of an infant's risk status, and later develop- mental disorders and delays in the child are strongly associated with these two biological risk factors (Rossetti, 2001). Various The South African Journal of Communication Disorders, Vol. 52, 2005 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) 26 Alethea Mclnroy and Alta Kritzinger complications in the perinatal period, lengthened hospitalizations and separation from the primary caregivers may contribute to de- layed development, and more specifically, delayed communica- tion development (Rossetti, 2001). Developmentally appropriate EC I goals should therefore aim to create the most ideal environ- ment viable to support the infant's development from the earliest possible time. Consequently, family-centered ECI services are advo- cated, since human relationships are essential for the survival and development of high-risk neonates (Als, 1997; Klaus & Kennell, 2001; Rossetti, 2001). A family-centered intervention approach in the NICU is essential as the parent-infant attachment process, initiated before conception and disrupted by preterm birth, needs to be restored and continued in the first days and weeks of the neonate's life (Klaus & Kennell, 2001). Optimum attachment is important as the caregiver and neonate's abilities to establish ideal patterns of interaction increase the potential for appropriate communication development in the neonate (Rossetti, 2001). Par- ents' stressful experiences of caring for the neonate in the NICU may have a negative influence on their subsequent interaction with the preterm infant (Klaus & Kennell, 2001). Interventions aimed at supporting the family are most important since parents are the primary mediators between the neonate and the health- care system (Young, 1997). Due to unique circumstances every high-risk neonate and family has individual needs, which emphasizes the provision of individualized ECI programmes (Als, 1999). The basis of a de- velopmental! y appropriate intervention programme rests on the premise that the neonate communicates through behavioural changes in response to physiological changes, handling or the environment (Ziev, 1999). By rendering services to the high-risk neonate, the family and the NICU staff, long-term risks for the neonate's communication development may be decreased (Rossetti, 2001). Due to the high prevalence of preterm and low birth weight infants in South Africa it is important that speech- language therapists play an active role in the NICU. Knowledge about the chronology of early communication development of infants while in the NICU, may guide developmen tally appropri- ate ECI programmes and facilitate best practice in the NICU. The research question for the study was stated as follows: How may serial assessment data of a high-risk neonate's commu- nication developmental progress in the NICU be used to identify the changing needs of the neonate and parents and provide guide- lines for an individualized developmentally appropriate ECI pro- gramme? Although the findings of a single case study cannot be generalized to other cases or contexts, it may be used as a basis for a larger scale study and a treatment option for ECI services in the NICU. METHOD Aims The main aim of the study was to provide a systematic description of the communication development of a high-risk neonate, from birth to discharge from a NICU in order to identify changing developmental needs in the infant and parents. Specific sub-aims were identified to track and describe the following aspects regarding the participant from birth to dis- charge from the NICU: • The cascading effect of biological risk factors identified in relation to the participant ο The changing physiological states, feeding behaviour, development of neurobehavioral states and the partici- pant's changing ability to organize himself in the NICU environment ο The participant's emerging communication development ο The process of attachment and parent-neonate interaction ο The changing needs of the participant and his parents with regards to ECI Based on the outcomes of the sub-aims a developmentally appro- priate ECI programme was applied during the neonate's stay in the NICU, and will be described together with guidelines for fur- ther intervention. Research Design An Α-type single case study research design was selected, since it is a descriptive research design that describes one partici- pant's behaviour as it occurs in the natural environment (McReynolds & Kearns, 1983). A longitudinal design was used since information related to a specific situation was gathered over time (Leedy & Ormrod, 2001), mainly by means of succes- sive prospective observations (McReynolds & Kearns, 1983). Participants Participant selection criteria ο The participant had to be a patient in a NICU for the duration of the data collection period, ο The participant had to be extremely premature, i.e. < 30 weeks (Southgate & Pittard, 2001) as these infants are usu- ally cared for in a NICU for a considerable amount of time (Young, 1997) so that sufficient changes could be observed over time to allow a rich description of the case (Leedy & Ormrod, 2001). Participant description The characteristics of the participant are described in Table 1. Table 1. Characteristics of participant at birth. Characteristic Description 1. Age of mother 33 years ; (ideal age 18-37 years, Rossetti, 2001) j 2. Mother's educational level Tertiary education j I 3. Position of participant in family t Second child 4. Mother's antenatal care Sufficient: 3 visits before 24 weeks (ideal: 5 visits before 35 weeks, Rossetti, 2001) 5. Duration of pregnancy 29 weeks (extremely premature, Southgate & Pittard, 2001) 6. Reason for preterm birth Premature rupture of membranes 7. Means of birth Caesarian section 8. Birth-weight 1040g (ideal: 3400-3800g) (Very low birth weight, Southgate & Pittard, 2001 9. Apgar score: 1 min and 5 min 4/10 and 6/10 (ideal 7/10 - 10/10) (Moderate asphyxia, Rossetti, 2001) 10. Weight for gestational age Small-for-gestational age (ideal 1175g for 29 weeks, Rossetti, 2001) Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 52, 2005 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) A Single Case Study of the Communication Development of a High-risk Neonate, From Birth to Discharge from an NICU 27 According to Table 1 the participant, who is male, presented with various risk factors for communication disorders and sen- sorineural hearing loss at birth. These factors include very low birth weight (<1 500g), extremely preterm birth (<30 weeks ges- tation), small-for-gestational age and moderate birth asphyxia (Joint Committee on Infant Hearing, 1994; Rossetti, 2001; Southgate & Pittard, 2001). Protective factors for the partici- pant's development were the mother's age, educational level, sufficient antenatal care and the fact that the participant was the parents' second child. The participant's parents were Setswana speaking, lived in a rural area 50 km from the NICU and the mother was a teacher and the father a policeman. The risks ap- peared to be mainly biological conditions with the participant's environment providing various protective factors that would support further development. Materials A comprehensive data-collection protocol, comprising of ten different developmental areas and related aspects, was com- piled. Firstly, the Risk Assessment (Kritzinger, 1994) was used to compile a risk profile and secondly, the Genetic Screening Checklist (Louw & Kritzinger, 1998) was used to describe any possible physical anomalies. Thirdly, the Developmental As- sessment (Willemse, 2003) was used to describe neonatal state transitions over time as well as the increased ability of the par- ticipant to organize himself. The Neonatal Communication As- sessment Instrument (Kritzinger & Louw, 2003) was used to describe the following four areas of development, i.e. the par- ticipant's earliest stages of prelinguistic communication devel- opment (precursors of language use, content and form) and pre- cursors of cognition. Components of the Oral-Motor/Feeding Rating Scale (Jelm, 1990) and the Feeding Evaluation Form for At-Risk Infants (FEFARI, Uys, 2000) were used to assess feed- ing behaviour from birth to discharge from the NICU. The ninth component of the data collection protocol was a description of the physical environment of the NICU. A component of the Neonatal Communication Assessment Guide (Swanepoel, 2000) was used for this purpose. Lastly,' the Observation of Communi- cation Interaction (Klein & Briggs, 1987) was used to describe the development of communication interaction between the par- ents and the participant over time'. PROCEDURES I Pilot study j A pilot study was carried out to determine the effective- ness of the data-collection protocol in the NICU. Permission was obtained from the hospital authority to conduct the research. The selection criteria stipulated for the main study were used to select a single participant for the pilot study. Informed consent was obtained from the participant's parents. The complete data- collection protocol was administered when the participant was thirteen days old. The age of the participant ensured that a range of neonatal behaviours could already be observed. The results of the pilot study were used to adjust the pro- tocol as follows, thereby contributing to its validity and reliabil- ity. (Leedy & Ormrod, 2001). ® A description of the routine activities that nurses performed on the participant while data collection took place, was added to the protocol. Routine care may elicit certain physio- logical and behavioural responses in a neonate (Young, 1997) and must therefore be considered when interpreting neonatal behaviour, ο The pilot study enabled the researcher to plan the duration of the data collection sessions and interview with the parents. « Recurrent items in the data collection protocol were removed, ο The pilot study gave the researcher the opportunity to meet the NICU staff and become familiar with the routines and cul- tural patterns in the NICU (Rossetti, 2001; Ziev, 1999). Reliability and validity of the study Reliability The following measures were taken to increase the reliability of the data-collection protocol: ο The data-collection protocol was subdivided into ten different sections so that every section could be observed and recorded separately. Reliability could be increased since the researcher could focus on a single component of the data collection pro- tocol at a time. ο A pilot study was carried out in order to refine the data collec- tion protocol. ο The participant for the main study was observed 14 times at regular intervals of three to four days apart and an hour was set aside for data collection, ο Only the head nurse of the NICU and another senior nurse were aware of the research project. The staff were therefore not biased to adjust their routine care-giving activities and pay special attention to the participant. Validity The following types of validity were considered in the study: Face validity refers to the appearance of the instrument and the question is whether the appearance confirms those vari- ables which the data collection protocol must measure (De Vos, 1998). To improve the face validity the protocol was given to a nurse with extensive experience in developmental care in the NICU for comments and her recommendations were integrated into the protocol. Internal validity refers to the researcher's ability to make accurate deductions concerning the data collected (Leedy & Ormrod, 2001). The researcher ensured that deductions were based only on the data that was collected (Leedy & Ormrod, 2001) and that it could be compared to other research findings. Ethics The research proposal of the study was approved by the Research Ethics Committee of the Department of Communication Pathol- ogy, University of Pretoria. Ethical issues taken into considera- tion during this study can be categorized as follows (De Vos, 1998; Leedy & Ormrod, 2001): Non-maleficence: Care-giving routines were not interfered with, the participant was not handled and hospital regulations concerning control of infec- tion were observed. Recommendations were made to test the par- ticipant's hearing and to obtain ECI services for the family. Informed consent for both the pilot and the research study were obtained from the participants' parents. The right to privacy: The participants' parents maintained their rights about any personal information to be included in the study. The South African Journal of Communication Disorders, Vol. 52, 2005 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) 28 Alethea Mclnroy and Alta Kritzinger Making results known: The researcher made the results known in an accurate and honest manner by means of the following: • Naming shortcomings and further research possibilities. • Results were made known in an accurate, objective and dis- tinct way. ® All resources were acknowledged. • Upon request the results were made known to the hospital and the participant's parents in the main study. Confidentiality: No identifying information about the participants or parents was included in the final report. Data collection and data analysis Data was recorded twice per week over 14 sessions, from the participant's birth to discharge from the NICU, using the com- plete data-collection protocol for every session. Data was obtained from the participant's medical file, an in- terview with the parents and direct observation of the participant and parents. The mother-infant interaction was observed eight times, while two opportunities arose to observe father-infant interaction. The observation of parent-infant interaction depended on the availability of the participant's parents to visit him at times that were also convenient for the researcher. The successive data sets of the single participant were organ- ized into different categories based on themes, concepts and cor- responding characteristics (De Vos, 1998). Objective measurements were obtained by calculating fre- quencies and averages of the participant's functioning on the dif- ferent components of the data collection protocol, which were represented in tables, graphs and figures. the mother's pregnancy, leading to the participant's preterm birth and subsequent stay of 51 days in the NICU is presented in Figure 1. According to Figure 1, and also indicated earlier in Table 1, a se- ries of biological events prenatally, lead to the participant's high- risk status. It is well known that extremely preterm birth and very low birth weight in a neonate may lead to the conditions which also occurred in the participant. The participant experienced respi- ratory distress syndrome, sepsis and anaemia, and subsequent medical interventions and medications, some of which could be damaging to developing organs such as the cochlea (Joint Com- mittee on Infant Hearing, 1994). It appears that a risk assessment represented as a chronol- ogy of events in Figure 1 may serve as a useful technique for speech-language therapists working in NICU's to keep track of conditions that may have long-term developmental implications for their clients. Instead of viewing the different risk factors as separate events in the mother and the infant, a chronology serves to provide a multidimensional perspective on the inter-relatedness of the different risk conditions. According to Shprintzen (1997) the trajectory of early biological events over time, expressed as the cascading effect of gene expression and incidents early in life, may be used to gain insight into the causes of genetic syndromes and developmental disabilities in children. The concept of contin- uum of risk, described by Rossetti (2001) expresses the same prin- ciple, but extends into the postnatal period and further in life. This concept may assist clinicians in ECI to consider retrospective fac- tors relating to the currently identifiable causes of, and contribut- ing factors to the communication disorders or delays in their cli- ents. The different events determining the participant's risk status in Figure 1 were used as a framework to analyze and inter- pret data about the participant's physiological states, feeding be- haviour, and developmental stages in the NICU. Figure 1. The cascading effect of the biological risk factors of the participant resulting in the 51 day stay in the NICU. Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 52, 2005 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) A Single Case Study of the Communication Development of a High-risk Neonate, From Birth to Discharge from an NICU 29 The changing physiological states, feeding behaviour and developmental stages of the participant while nursed in the NICU environment A detailed analysis of the chronology of the different develop- mental aspects underlying the participant's communication de- velopment is provided in Table 2. Table 2. The physiological states, feeding behaviour and states of the participant in the NICU environment. Age 3 days 6 days 10 days 13 days 17 days 20 days 24 days 28 days 31 days 34 days 38 days 41 days 45 days 48 days Age 30 weeks 31 weeks 32 weeks 34 weeks 35 weeks 36 weeks P hy si ol og ic al s ta te s Medication Amikacin Vancomycin Vancomycin P hy si ol og ic al s ta te s Pulse - ECG (s/m) 145 148 153 144 147 157 151 160 163 165 166 164 155 161 P hy si ol og ic al s ta te s SC Body Temperature 37 36.8 36.9 36.4 36.7 36.8 36.9 36.9 37 36.9 37 37 36.8 37 P hy si ol og ic al s ta te s % Oxygen Saturation 95 96 96 95 95 96 97 97 94 96 94 96 96 > 9 0 P hy si ol og ic al s ta te s Ventilation CPAP* Nose cannula Nose cannu- la & room air Room air P hy si ol og ic al s ta te s % Oxygen <40 1/21 1/21 1/41 1/41 1/41 1/21 1/41 1/41 1/41 1/41 Nose cannu- la & room air Room air Fe ed in g Feeding (ml) 156 150 180 180 192 216 232 232 246 288 305 273 368 276 Fe ed in g Aspiration (mi) 0 0 0 0.5 5.54 0 1.3 0 8.3 2.6 0 0 0 0.5 Fe ed in g Feeding Method Day 2 to 38: Nasogastric tube feeding Day 1: Intravenous feeding Combination of nasogastric tube feeding and breast-feeding F ee di ng Weight (g) 1040 1040 1120 1120 1250 1280 1290 1400 1400 1660 1720 1720 2000 2008 S ta te s an d th e ne on at e' s ab ili ty t o o rg an iz e It se lf Development Stage Turning-in stage (Rossetti, 2001) Coming out stage Reciprocit y stage S ta te s an d th e ne on at e' s ab ili ty t o o rg an iz e It se lf States observed Deep sleep & active sleep Deep sleep Active sleep Deep sleep & active sleep Active sleep Deep sleep & active sleep Deep sleep Active sleep & quiet alert Active sleep, drowsy & quiet alert Deep sleep, active sleep, drowsy & crying Deep, sleep active sleep & drowsy S ta te s an d th e ne on at e' s ab ili ty t o o rg an iz e It se lf Regulation of subsystems I Motor disorganization Motor organization S ta te s an d th e ne on at e' s ab ili ty t o o rg an iz e It se lf Regulation of subsystems Self-requlation S ta te s an d th e ne on at e' s ab ili ty t o o rg an iz e It se lf Regulation of subsystems States organized S ta te s an d th e ne on at e' s ab ili ty t o o rg an iz e It se lf Regulation of subsystems Attention/Interaction subsystem organized c ο Ε c ο "5 c β 3 Lighting Light on infant | Dim lights, except for care giving routines Light in en- vironment c ο Ε c ο "5 c β 3 Noise Moderat e noise Quiet Moderate noise Quiet Moderate noise Quiet Moderate noise Quiet High levels of noise Moderate noise Quiet Moderate noise c ο Ε c ο "5 c β 3 Stay in NICU Warm table Incubator lncubator& crib Crib Ζ Development Water mattress Sheep skin Ζ appropriate Positioning with towel or blanket rolls and silicon cushions; pacifier Ζ care strategies ι Towel on incubator to decrease noise; covering to decrease light Note: *Continuous Positive Airway Pressure The South African Journal of Communication Disorders, Vol. 52, 2005 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) 30 The results suggest that the participant, even though extremely premature, was kept physiologically stable from birth to dis- charge by the life support interventions that have increased the survival rates of high-risk infants in the NICU in recent years (Als, 1997). As indicated in Table 2 the participant's body tem- perature was stable and oxygen saturation levels were above the recommended 90% levels (Zaichkin, 1996). The participant's physiological stability resulted in maturation that could be ob- served in the successful transition from nasogastric tube feeding to breast-feeding during the last 13 days of his stay in the NICU. Fairly consistent weight gain in relation to the amount of fluid taken per day was also observed in the participant. Upon close inspection of Table 2 it can be seen that a pacifier was provided to facilitate nutritive sucking in the partici- pant, but since no further feeding intervention was implemented by the nursing staff, an opportunity for feeding therapy guide- lines was missed. Since the participant was physiologically sta- ble, guidelines for optimal positioning and oral stimulation and the early introduction of Kangaroo Mother Care may have facili- tated successful breast-feeding at an earlier stage in the partici- pant (Van Rooyen, Pullen, Pattinson & Delport, 2002). As depicted in Table 2 the participant went through the neuro-developmental stages described by Gorski, Davidson and Brazelton in 1979 (in Rossetti, 2001). The turning-in stage usu- ally occurs in infants less than 32 weeks gestation age, and the participant's state of awareness typically fluctuated between deep and active sleep and he was easily startled by environmental stimuli such as noises, which could be observed as motor disor- ganization (Rossetti, 2001). Characteristics of motor disorganiza- tion displayed by the participant included jerky movements, large movements away from the body, hyperextension, repetitive unco- ordinated movements and poor sucking (Gardner & Lubchenco, 1998). The participant's physiological state was mechanically maintained and he displayed no self-regulatory behaviour during the turning-in period of data collection. No regulation of the other subsystems, such as the attention/interaction, motor and state regulatory subsystems occurred (Gardner & Lubchenco, 1998; Willemse, 2003). The participant reached the coming-out stage at 38 weeks gestation age, a stage typically reached after 35 weeks Alethea Mclnroy and Alta Kritzinger (Rossetti, 2001). Although delayed, the coming-out stage was characterized by a greater variety of awareness states in the par- ticipant, thereby demonstrating his increased ability to regulate and organize himself in the extra-uterine environment. During the coming-out and reciprocity stages the participant experi- enced five of the six states of awareness, from deep and active sleep, to drowsy, quiet alert and crying (Rossetti, 2001). No ac- tive alert state was observed during any of the data collection sessions. The NICU environment appeared to provide some sup- port to the participant's development since lights were mostly dimmed, coverings were used to decrease light, and develop- mentally supportive equipment such as a water mattress, a sheep skin, blanket rolls, silicon cushions and a pacifier was provided (Zaichkin, 1996). The participant's mother was encouraged to practice Kangaroo Mother Care by the nursing staff when the participant was no longer receiving continuous positive airway pressure. It is not known to what extent the mother received training to sustain this excellent technique, now considered as best practice for high-risks neonates (Power, 2002). The moder- ate to high noise levels occurring regularly during data- collection times (Swanepoel, 2000) appear to be typical of de- scriptions of NICU environments in the literature (Gardner & Lubchenco, 1998) and are considered as a major source of physiological stress for preterm infants (Rossetti, 2001). Knowledge regarding NICU environmental stressors, the medical and developmentally appropriate interventions imple- mented in the NICU is essential to guide the speech-language therapist in designing comprehensive ECI programmes (Rossetti, 2001). ECI programmes must include strategies to protect high- risk neonates from noise bombardment, facilitate their communi- cation development, involve their parents from the beginning and compensate for the separation from their primary caregivers. The participant's communication development in the NICU The tracking of the participant's communication development, described in terms of precursors of language content, form, use and cognition, was carried out as serial assessments, using the Neonatal Communication Assessment Instrument (Kritzinger & Louw, 2003). The results are presented in Figure 2. ο Q) O) ο a> a. Q) o> > < 90 80 70 60 50 40 30 20 10 0 4- j l 10 13 17 20 24 28 31 34 38 41 45 48 Age of subject in days • Precursors to language content • Precursors to language use ^Precursors to language form • Precursors to cognition Figure 2. The communication development of the participant during his stay in the NICU. Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 52, 2005 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) A Single Case Study of the Communication Development of a High-risk Neonate, From Birth to Discharge from an NICU 31 According to Figure 2 the participant's communication devel- opment gradually unfolded as the different components of lan- guage skills emerged. Precursors of language content appeared first on Day 12, when the participant started to respond reflex- ively to sound during the turning-in neurodevelopmental stage (See Table 2). During the participant's turning-in stage on Day 24, the second component of language to emerge were the pre- cursors of language form, characterized by the emergence of differentiated cries, crying in response to another infant's cry, and discomfort sounds. After Day 38 the participant progressed to the coming-out stage, displaying increased levels of motor organization, self-regulation and feeding skills (See Table 2), concurrently with the emergence of precursors of language use and cognition. At this stage the participant made fleeting eye contact with caregivers, accepted cuddling, displayed adapting behaviours after repetitive stimuli, and demonstrated self- comforting responses. Upon discharge from the NICU after 51 days the participant did not yet exhibit all the communication ι interaction skills typical of a full-term newborn infant (Kritzinger, 1994), thereby displaying a risk for a communica- tion disorder or delay. The successive emergence of the different components of language skills in the participant provided new insights into the communication development of a preterm neonate and should be further investigated in a representative sample so that reliable inferences can be made. The emergence of hearing re- sponses only on Day 12, followed by differentiated vocal ex- pressions several days later, and interactive communication skills at a later stage in the participant, appear to correspond with certain fetal developmental patterns as described by Le- canuet, Granier-Derferre and Busnel (1995) and Gottlieb (1971, in ASHA, 2004). Hearing responses and prenatal audi- tory learning are present in fetuses during the last trimester of pregnancy (Lecanuet, et al., 1995), the first vocal expression occurs only at birth with the birth cry, and interactive commu- nication behaviours are characteristic of newborn communica- tion capabilities. Gottlieb (1971, in ASHA, 2004) describes the successive development of sensory systems as a process where the tactile system develops first during the fetal period, fol- lowed by the vestibular, auditory and visual systems. The im- plication is that the auditory system functions before the visual system, which indicates the same sequence of sensory func- tioning and language development observed in the participant of the present study. j The results of the successive development of communi- cation skills in the participant provide guidelines for the grad- ual introduction of sensory experiences in the individualized ECI programme for the participant. Avoiding noise exposure I and replacing inappropriate auditory stimulation with gradual exposure to human voices, preferably the voices of the partici- pant's primary caregivers, appear to be developmentally appro- priate. The interactive component of language development, i. e. language use, should only be introduced when the infant's physiological subsystems display readiness for reciprocity. Self-quieting behaviours and the ability to respond to caregiv- ers are indicators that the infant is ready for reciprocal interac- tion (Rossetti, 2001). According to Rossetti (2001) sensory over-stimulation may prolong the duration of an infant's time in the turning-in stage. ECI strategies and techniques to promote high-risk neonates' progress through the different stages and the key role that their parents can play in early communication development, should therefore be investigated. Progress of parent-infant interaction during the participant's stay in the NICU The Observation of Communication Interaction (Klein & Briggs, 1987) was used to measure the quality of the interactions between the parents and the participant. Since the parents lived 50 km from the hospital, they could not visit the participant regularly. The results are depicted in Figure 3. Figure 3. Parent-infant interaction during the participant's stay in the NICU. Note: Parent-infant interaction values: 1= never; 2= sometimes; 3= often; 4= optimally As indicated in Figure 3 the participant's parents both dis- played limited interaction with their infant during the first observa- tion sessions, despite the nurses' encouragement to talk to the infant and to provide appropriate tactile stimulation. Both parents read the information file provided by the NICU staff to encourage parental participation in the care-giving routines of the infants, and read the ECI plans provided weekly by the researcher. When the participant was 28 days old the frequency of the mother's interaction with the participant during data collection could be described as "often" (See Figure 3, key to parent-infant interaction measurement), even though he was still in the turning-in stage and not responding actively to her interest shown in him. No specific reason for the mother's increased interaction on that day with the participant can be offered, except that both the NICU staff and the researcher continuously encouraged her involvement in the participant. According to the results there was an increase in parent-infant interaction over time, but could only be described as "sometimes" and did not change when the participant emerged from his turning-in stage. Although the neonate's level of arousal increased according to the corresponding developmental stage, the type and amount of input given to the infant by the parents was not increased. Consequently, appropriate interaction between the participant and his parents was not facilitated. The quality of the parent-infant interaction sessions must be viewed against the extremely stressful experiences of parents while their infants are in the NICU (GUldenpfennig, 2000). The normal attachment process that already starts during pregnancy and must be continued after birth so that interaction can develop, is interrupted by the participant's preterm birth and need for immediate medical care (Klaus & Kennell, 2001). Apart from the delayed attachment proc- ess, parents must adapt to the strange environment of the NICU, lack of privacy and often experience feelings of anxiety, fear, concern, guilt, aggression, denial, helplessness and depression (GUldenpfennig, 2000). These feelings contribute to the parents' un- certainty about their role in the NICU. Feelings of helplessness may ι» a 1 4 η > c • 1 3 — ο CD 1 2 τη η η η - ρ ι r y c CO 4 - " Τ Ί — Γ Τ Ί — — — — ~~ — ~ C 0 "H—' 1 —1 1 I 1 1 ! — 1 1 I — j-LJ— 2 3 6 28 34 38 41 45 48 Age of participant in days • Mother-neonate interaction • Father-neonate interaction The South African Journal of Communication Disorders, Vol. 52, 2005 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) 32 Alethea Mclnroy and Alta Kritzinger disempower parents which may limit their involvement with their infant (GUldenpfennig, 2000). It is clear that insight into parental emotions and experi- ences are essential so that valid interpretations of the participant's parents' lack of interaction with him can be made. Parental per- ceptions of the role of professionals and their respect for those professionals are culturally based and may influence their in- volvement in ECI (Louw & Avenant, 2002). It could also be that the parents were not treated as autonomous members of the deci- sion making team in the NICU, which could influence the power balance between professionals and parents. The participant's par- ents were experienced caregivers, since he was their second child, but they required a sensitive family-centered approach to support them through the process of having a medically fragile infant in the NICU and they needed training to appropriately stimulate the development of the infant. The changing needs of the high-risk neonate and parents form birth to discharge form the NICU The results of the study were integrated in an overview of the changing needs and opportunities for developmentally appropri- ate care strategies that will also enhance the early communication development of the participant. The participant advanced through the different neurodevelopmental stages of turning-in, coming out and reciprocity as described in the literature (Rossetti, 2001). Each of these stages requires distinct changes that should be re- flected in the individualized ECI programme for the participant and his parents. The parents of the participant displayed the fol- lowing needs: β Emotional support, especially when the participant was in the turning-in stage of development. The parents required coun- seling from professionals in the NICU, information on their infant's conditions and capabilities, and training to improve their interaction skills with the participant and to gain confi- dence. β Encouragement to visit the participant more often, since they lived far from the hospital, β Development of skills to interact with the participant accord- ing to his developmental stages. Since the parents displayed limited interaction with their infant despite continued guid- ance, demonstration and direct modeling of appropriate inter- action with the participant by the nurses and the speech- language therapist is recommended. Factors hampering their full participation should be considered. . Use of Kangaroo Mother Care and breast-feeding times for communication interaction between mother and infant. The mother should gain insight into the fine balance between over-stimulation and appropriate stimulation techniques, ο Discharge planning in order to facilitate the take over of com- plete care of the participant in a developmentally appropriate way. ECI service delivery in the NICU is guided by the development of the high-risk neonate, which in turn impacts on the parents, staff and regulation of the environment. Based on the results of the study an example of a developmentally appropriate communi- cation intervention programme in the NICU, that may be used as a treatment option, is provided in Appendix A. The different de- velopmental areas and stages to be considered in the compilation of such a programme are summarized in Figure 4. Figure 4. The interrelationship between the developmental areas and stages of the participant which may guide the NICU intervention programme Die Suid-Afrikaanse Tydskrif vir Kommunikasieafwykings, Vol. 52, 2005 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) Case Study of the Communication Development of a High-risk Neonate, From Birth to Discharge from an NICU 3 3 The ECI programme presented in Appendix A is based on the p r i n c i p l e s 0 f individualized care and a family-centered approach (Als, 1997; Rossetti, 2001), with the aim to ensure the best pos- sible outcomes for the infant and family. The guidelines include a wide variety of topics to provide parents with information to become more familiar with the highly technical environment of the NICU, their infant's medical conditions and behaviour pat- terns. The information is mainly provided as handouts, but may be discussed with the parents as well. Finally, the ECI pro- gramme is holistic and interventions are directed at the infant, parents and the staff of the NICU. As indicated by Gottlieb (1971, in ASHA, 2004) and Lecanuet, et al. (1995), and empha- sized by the results of the study, direct intervention with the high-risk neonate involves the successive introduction of sen- sory stimuli as the infant moves through the turning-in, coming out and reciprocity stages of development. CONCLUSION The description of the early successive communication development of a single high-risk neonate provided rich and new information that should be further investigated. Due to the limitations of a single case study the results cannot be general- ized, but may serve as an example of a case that may be encoun- tered in clinical practice. The results describing the effect of the preterm birth and NICU experience on the participant's parents should alert clinicians to the sensitive approach and skills re- quired when working with parents, without whose full participa- tion ECI efforts cannot be effective (Rossetti, 2001). The developmentally appropriate communication inter- vention programme may be adapted to suit the unique needs of high-risk neonates and their families in private and public health settings in South Africa. The results also serve to alert speech- language therapists and audiologists of the set of events that contributed to the communication development of an infant or child and family who spent time in an NICU and who now re- quires their services. The urgency for knowledge about high- risk neonates and their families is now more important than ever in South Africa since poverty and the increased incidence of low birth weight and preterm' infants among pregnant women witli HIV/AIDS (Van Rooyen, et al., 2002) requires the atten- tion of all involved in early intervention efforts. REFERENCES Als, H. (1997). Earliest intervention for preterm infants in the newborn intensive care unit. In M. J. Guralnick, (Ed.), The Effectiveness of Early Intervention (2n d ed., pp. 47- 76). Baltimore: Paul H. Brooks Publishing Co. Als, H. (1999). Reading the premature infant. In E. Goldson (Ed.), Developmental Interventions in the Neonatal Inten- sive Care Nursery (pp. 18-85). New York: Oxford Uni- versity Press. ASHA, (2004). Roles of speech-language pathologists in the neonatal intensive care unit: Technical report. Retrieved September 1, 2004, from http://www.asha.org/members/ deskrefjournals/deskref/default Brazelton, T.B. (1984). 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Joint Committee on Infant Hearing. (1994). 1994 Position statement. Audiology Today, 6(6), 6-9. Jelm, J.M. (1990). Oral-motor/ Feeding rating scale. Tucson: Therapy Skill Builders. Klaus, M.H., & Kennell, J.H. (2001). Care of parents. In M.H. Klaus, & A.A. Fanaroff (Eds.), Care of the High-Risk Neonate (5th ed., pp. 195-222). Philadelphia: W. B. Saun- ders Company. Klein, M.D., & Briggs, M.H. (1987). Observation of communi- cative interaction. Journal of Childhood Communication Disorders, 10, 95-106. Kritzinger, A. M. (1994). Vroee kommunikasieontwikkeling van biologiese risikobabas. Unpublished masters thesis, Uni- versity of Pretoria, Gauteng, South Africa. Kritzinger, A. (2003). Risk assessment. Department of Commu- nication Pathology, University of Pretoria, Gauteng, South Africa. Kritzinger, Α., & Louw, B. (2003). Clinical training of under- graduate communication pathology students in neonatal assessment and neonate-caregiver interaction in South Africa. The South African Journal of Communication Disorders, 5, 5-14. Lecanuet, J., Granier-Deferre, C., & Busnel, M. (1995). Hu- man fetal auditory perception. In J. Lecanuet, W.P. Fifer, N.A. Krasnegor, & W.P. Smotherman (Eds.), Fetal devel- opment. A psychobiological perspective (pp. 239-262). New Jersey: Lawrence Erlbaum Associates, Inc. Leedy, P.D., & Ormrod, J.E. (2001). Practical Research. Plan- ning and Design. New Jersey: Prentice-Hall, Inc. Louw, B., & Avenant, C. (2002). Culture as context for inter- vention: Developing a culturally congruent early inter- vention program. International Pediatrics, 17(3), 145- 150. Louw, B., & Kritzinger, A. (1998). Genetically based commu- nication disorders: Technological advances relevant to the speech-language therapist and audiologist [Monograph]. Clinica: Applications in Chmcal PracUce of Communication Pathology, 3, U-26. McReynolds, L.V., & Kearns, K.P. (1983* « " perimental designs in communicatee disorders. 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APPENDIX A Developmentally appropriate communication intervention programme in the NICU Compiled by Alethea Mclnroy and Alta Kritzinger, 2003 Principles of the programme (Willemse, 2003) ο Individualized care of the neonate in order to improve the developmental outcomes, to support growth and development and to facili- tate the stabilization of physiological functioning and behaviour ο Family-centered care that views the neonate within the family context and that involves the parents in the care of the neonate from birth to discharge from the NICU Aims of the programme (Willemse, 2003) ο To protect and promote the developmental progress of each neonate ο To avoid harmful environmental stimulation ο To ensure the best possible outcomes for the neonate and the family These aims can be accomplished by supporting the neonate, the family and the NICU staff. Guidelines for implementing the Communication Intervention Programme ι i Guidelines were explained in a file provided to the parents. The participant's parents had access to the following information in the file that was kept at the participant's incubator: ! I ο Individualized care plan: These care plans were compiled weekly and provided information on (Rossetti, 2001; Willemse, 2003): How the participant demonstrates that he is content Which activities and handling patterns increase the participant's stress levels and should be avoided Which observable behaviours demonstrate signs of stress in the participant Which techniques may be used to comfort the participant and facilitate his growth and development Suggested developmentally appropriate activities to include in the participant's schedule ο A pamphlet on the hearing abilities of high-risk neonates, risks for hearing impairment in the NICU and information on hearing testing after'discharge ο Guidelines on handling the high-risk neonate for the primary caregivers and family ο Phases of adaptation of the family of the high-risk neonate ο Information brochure: Who is the high-risk infant? ο Information about the physical NICU environment ο The nature of the NICU as a social environment: Handout about Kangaroo Mother Care and a handout about the Stimulation of Early Speech, Language and Listening Skills (Handouts may be obtained from the second author) ο Guidelines on "swaddling bathing" ο Discharge criteria ο Guidelines for caring of the high-risk neonate at home R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2) A Single Case Study of the Communication Development of a High-risk Neonate, From Birth to Discharge from an NICU 35 Guidelines for ECI in the NICU Based on the results of the study and Rossetti (2001) and Willemse (2003) the following guidelines for ECI in the NICU are pro- posed: 1. Intervention directed at the neonate Appropriate positioning and handling Calming techniques Regulation of developmental subsystems Socio-communicative interaction Appropriate and graded tactile, auditory and visual stimulation: Provide auditory stimulation only when the infant is in the turning-in and coming out stages. The visual component of communication interaction may be added when the infant enters the reciprocity stage of development. Rationale for intervention activities directed at the neonate To reduce stress experienced by the neonate Activities can assist in conserving the neonate's energy for growth To respond appropriately to the neonate's behaviour To understand the neonate's current level of organization To modify care according to the neonate's behaviour and ability to organize himself To adapt to the neonate's developing individual needs 2. Intervention directed at the parents (Rossetti, 2001; Guldenpfennig, 2000) Strategies for intervention Determine the parents' specific circumstances Establish a relationship with the parents, accept their diversity and support them Determine the parents' knowledge and experience about preterm birth Train parents to develop skills to respond appropriately to the neonate, keep a journal, reflect on their own feelings and use available resources Guide parents during the stages of attachment Focus on parental and,family strengths - χ Provide information about developmental expectations and the need for serial developmental assessments after discharge / _ I Rationale for intervention activities directed at the parents To reduce the stressful impact of the NICU on the neonate and family To facilitate adaptive parenting and overcome difficulties with attachment to the neonate To respect personal, social and cultural influences on the family To ensure independent home care after discharge from the NICU 3. Intervention directed at the NICU staff (Rossetti, 2001) To be aware of the environment in terms of noise, lighting, handling and positioning of the neonates To identify stress signs in the neonates and respond appropriately To identify neonatal developmental stages and promote self regulating behaviour in infants To implement developmental care effectively To apply new strategies and trends in developmental care, such as kangaroo mother care To integrate services provided by different disciplines To promote the social environment in the NICU The South African Journal of Communication Disorders, Vol. 52, 2005 R ep ro du ce d by S ab in et G at ew ay u nd er li ce nc e gr an te d by th e P ub lis he r (d at ed 2 01 2)