layout 1 [qualitative research in medicine & healthcare 2017; 1:6932] [page i] in seeing this issue come together, i am reminded of narrative scholar’s amy shuman1 examination of available narratives and counter-narratives. available narratives are the preferred and prevailing accounts of a society, accepted cultural discourses from which narrators can readily draw to tell their own stories. as is the case with the canonical hospice narrative of hopelessness in what tullis, roscoe and dillon2 characterize as the death avoidant united states, or the psychiatric narrative of anorexia nervosa as something in the individual’s mind taken up by ciabattoni,3 once available narratives become institutionalized they become dominant by appearing to represent a collective ethos. i say appearing because narratives can be deconstructed and reconstructed. writing about how personal narratives of disability have not only countered dominant narratives of disability but actually reimagined the field of disability studies, shuman notes that by revealing disruption and disjuncture in dominant accounts, counter narratives resist the restrictions and impositions of available narratives from being placed on the lived experiences of narrators – and that is not just how they tell their story, but how they live it. the article by tullis, roscoe and dillon2 beautifully demonstrates how hospice patients are able to do just that by telling second stories of hope in hospice. these stories resist the traditional definition of hope as beating illness or death, for in them patients reject the fight metaphor that casts them as losers, but rather see hope and hospice as a way of still valuing life and reclaiming their authority on (and authoring of) it. vivid and compelling, ciabattoni’s personal narrative3 of her multi-voiced relationship with anorexia as a presence in her life not only counters the nosological narrative of psychiatry, but opens up ways to resist the isolation that sustains the dominant story of anorexia, and to choose other ways of telling the self. though the authors of the three articles that follow do not write about narrative per se, i see the studies by munteanu & jordan,4 baldwin et al.,5 and spataro et al.,6 are also very much engaged in countering available narratives, and opening up the space for novel ways of accounting for healthcare experiences and situated (re)tellings. by endeavoring to elicit and listen to stories as yet institutionally unavailable, munteneau and jordan’s interviews with physicians allow the researchers to acknowledge that though clinical practice guidelines may make good sense for institutional praxis, those who must practice them find themselves at odds with them. the authors’ work in this piece serves an important reminder that guidelines should fit people, rather than the other way around. the examination of how patients with hepatitis c experience fatigue by spataro, afdhal, weinstein, escheik, austin, brodie, gerber, and younossi similarly engages with the dominant medical narrative of fatigue in order to problematize it from the bottom up, by interrupting the diagnostic account a complex condition with the actual bodies and voices of those for whom the term signifies multiple life changes. i see the authors’ effort as a step in allowing life stories of living with fatigue to in-form, or give shape to assessment measures that purportedly classify the experiences of those with what medical discourse understands as fatigue, so that the exigencies of the institutional narrative not result in rendering the term meaningless to patient lives or, for that matter, in invalid measures and assessments. the article by baldwin, pope and marks offers an occasion for readers to reflect on the case study as an analytical and theory-building occasion in qualitative research in medicine. in doctor’s stories,7 english profeseditor’s introduction mariaelena bartesaghi department of communication, university of south florida, tampa, fl, usa correspondence: mariaelena bartesaghi, department of communication, university of south florida, 4202 e fowler ave cis 3057, tampa, 33620 fl, usa. tel: +1.813.974.2145 fax: +1.813.974.6817. e-mail: mbartesaghi@usf.edu key words: qualitative research in medicine & healthcare; editorial; introduction. received for publication: 19 july 2017. accepted for publication: 20 july 2017. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright m. bartesaghi, 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:idoi:10.4081/qrmh.2017.6932 qualitative research in medicine & healthcare 2017; volume 1:i-ii no n c om me rci al us e o nly sor kathryn hunter remarks that medicine is narrative practice, recoverable by careful reconstruction of how the many voices that comprise medical care speak as one to codify their stories for institutional purposes. hunter notes that the case studies published in medical journals follow the structure of detective stories, where the omniscient voice of medical science balances the tension between the unique nature of the singular case and that of the requirements of generalizability by following a known and well-documented protocol of investigation, uncovering the solution, and solving the mystery of the illness. the patient’s body, in these stories, is merely the setting for the story; a stage for the illness and the medical dénouement alike. quite a different matter is the case study as presented by baldwin and her co-authors. by narrating ravi’s culturally situated and gendered case of an asian indian son taking over the role of caregiver of his parents as a first generation citizen of the united states, ravi’s case speaks to the interpersonal complexities of caregiving, and how health care professionals must adapt their own available accounts to address these. as with the other research articles that make up this issue, i invite readers to appreciate how qualitative research is itself a narrative endeavor, a way to take dominant narratives to task, and encourage, if not push for versions that counter the way things are, by proposing viable ways for healthcare practices to take up ways things should and could be. references 1. shuman a. culturally available narratives in parents’ stories about disability. in: i. goodson, a. antikainen, p. sikes, m. andrews (eds.), the routledge international handbook on narrative and life history. new york: routledge; 2017. 2. tullis ja, roscoe la, dillon pj. resisting the hospice: narrative in pursuit of quality of life. qualit res med healthc 2017;1:6152. 3. ciabattoni e. changing the narrative: a social reconstruction of anorexia nervosa. qualit res med healthc 2017;1:6367. 4. munteanu mc, jordan jc. a view into clinical practice guidelines: who uses them, who doesn’t and possibly, why. qualit res med healthc 2017;1:6544. 5. baldwin pk, pope nd, marks ad. cultural implications of filial obligation and the asian indian american family caregiver. qualit res med healthc 2017;1:6618. 6. spataro, afdhal s, weinstein aa, et al. fatigue and hepatitis c: a focus group study. qualit res med healthc 2017;1:6698. 7. hunter km. doctor’s stories: the narrative structure of medical knowledge. princeton: princeton university press; 1993. [page ii] [qualitative research in medicine & healthcare 2017; 1:6932] editorial no n c om me rci al us e o nly layout 1 as we put the finishing touches on volume 5, issue 3 of qrmh, i have much to be thankful for as editor. first, i will be the first to say that i couldn’t put this journal together without teresa carrara, managing editor at pagepress journals. teresa fields initial correspondence with authors, does a lot of the editing, solves problems as they occur with the website, and works with claudia castellano on page layout and proofs. most important, teresa keeps on my case and doesn’t let me slide on anything. she has a knack for reminding of tasks that need to be done and for saving me from making mistakes. she is also determined to keep qrmh on track and on time. oh, and she tells me when my perfectionist tendency goes too far. i can’t imagine how i would do my job without teresa’s formidable contributions in the editorial and production process. i also am grateful for our many reviewers – newcomers and veterans. last issue, my first as editor-in-chief, was a bit of a struggle in finding reviewers, since i had pretty much exhausted the list at hand. i then turned to colleagues who i know through teaching and service. i was amazed at the positive responses that i received when i requested their help. to date, not a single person has turned me down when i asked them to join our cadre of reviewers. and only one person has turned down an offer for reviewing—and for good reason (the topic simply wasn’t in their range of specialization). all reviews have been thoughtful and insightful. never have i received a response from a reviewer where i thought that the person was not trying to be helpful to the authors. reviews tend to be lengthy and detailed, which is just what authors need, wherever manuscripts are in the rejection/acceptance scale. indeed, the kindness and generosity exhibited by our reviewers is in perfect step with the identity that i have come to associate with qrmh. i often find myself saying that qrmh is a helping journal. while we might not yet have the stature of some of the other journals in our field (it’s early days yet!), i am proud to say that all of us at qrmh share a belief in the communal value of our journal. we really have created a mutually supportive place for those interested in conducting and reading qualitative research pertaining to illness and health. in the spirit of being a “helping journal,” i am happy to begin a new feature for our journal. with this issue, i will begin to seek out and publish articles with a pedagogical focus on a regular basis. it occurs to me that if we are going to champion qualitative research, we should also take on the responsibility of welcoming and encouraging researchers who might be looking for some guidance in trying their hands at qualitative methodologies. in that spirit, we have not one, but two articles whose primary purpose is to explicate qualitative methodologies in ways that could be adapted or replicated in other settings. elissa foster and jay baglia1 describe their method for working with healthcare providers (hcps) in reframing “difficult cases.” informed by kenneth burke’s dramatistic theory, dr. foster and dr. baglia demonstrate that by recognizing and identifying narrative elements in their own stories, hcps become responsible for the meanings and associations that they construct in their professional discourse. by deliberately reframing stories (and here, i include clinical reports), hcps accept ownership of their stories as well as subsequent responsibility for how they rhetorically represent cases that didn’t go the way they had hoped. lauren e. weston, sarah l. krein, and molly harrod2 also offer step-by-step guidelines for using a qualitative methodology—in this case, observation. using their work in observing hcps’ use of personal protective equipment, the authors provide a guide that can be adapted to a variety of healthcare settings with respect to training fieldworkers, collecting observational data, and transcribing field notes. among the challenges the authors usefully address is how to work within ethical guidelines while coneditorial warren bareiss department of communication, university of south carolina upstate, spartanburg, south carolina, usa correspondence: warren bareiss, department of communication, university of south carolina upstate, spartanburg, south carolina, usa. e-mail: bareiss@uscupstate.edu key words: editorial; difficult cases; observation; communitybased cancer wellness center; ovarian cancer. received for publication: 28 january 2022. accepted for publication: 28 january 2022. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2021 licensee pagepress, italy qualitative research in medicine & healthcare 2021; 5:10386 doi:10.4081/qrmh.2021.10386 [page 118] [qualitative research in medicine & healthcare 2021; 5:10386] qualitative research in medicine & healthcare 2021; volume 5:10386 no nco mm er cia l u se on ly ducting observational research so that trust is maintained between participants and researchers. besides our inaugural articles focusing on selected methodologies, this issue of qrmh also features two full qualitative studies. andrea l. meluch3 examines how people diagnosed with cancer perceive social support and benefits in working with a community-based cancer wellness center. through semi-structured interviews, dr. meluch reveals psychosocial benefits participants attribute to the wellness center including feeling accepted, being validated in their new sense of identity thrust upon them by their diagnoses, stress release, and feeling less isolated. furthermore, patients at the center also saw the center as a crucial source of much-needed support. clearly, the community-based center in the study, and others like in many other locations, provide a valuable means of re-connection for its clients. among all the articles offered in this issue of qrmh, work by dinah a. tetteh and najma akhther4 reminds me most of what most attracted me to qualitative research many years ago. a student in my health narrative class just this morning asked me if stories that people tell should be considered “real” or “symbolic.” my answer was essentially “yes.” stories that ovarian cancer patients/survivors tell in this article are invitations. they invite listeners (and readers) to peer through windows into participants’ hope, fear, frustration, anger, joy, and sorrow. most of all, the stories are about different ways that participants deal with uncertainty. response to uncertainty, in turn, is related to how open or guarded patients/survivors are when discussing their health with others. and this brings us back to where we started, recognizing not only what stories reveal (or hide), but also the importance of narrative analysis in qualitative research. this issue of qrmh offers us so much regarding how we can best understand not only the experience of illness, but also how to better appreciate how we can find our ways into that understanding through careful use of qualitative methods. references 1. foster e, baglia j. the difficult case consultation: an intervention for interprofessional health communication. qual res med healthcare 2021;5:9977. 2. weston le, krein sl, harrod m. using observation to better understand the healthcare context. qual res med healthcare 2021;5:9821. 3. meluch al. psychosocial benefits of the social support experienced at a community-based cancer wellness organization. qual res med healthcare 2021;5:10232. 4. tetteh da, akhther n. openness and topic avoidance in interpersonal communication about ovarian cancer: an uncertainty management perspective. qual res med healthcare 2021;5:9376. [qualitative research in medicine & healthcare 2021; 5:10386] [page 119] editorial no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2017; 1:6642] [page i] on behalf of the authors, the reviewers, the editorial staff and our wonderful editorial and advisory boards i extend a warm welcome to our first issue of qualitative research in medicine and healthcare (qrmh)! i am lucky to be working with so many great people, and dedicated to making this a great place to publish. with many qualitative research journals already on the academic scene, and a good amount of these in the areas of health communication, healthcare, and medicine a new journal is a risky proposition. as our aims and scope promise, it is nonetheless a vital and crucial undertaking. as the articles in this first issue demonstrate, qrmh is true to its promise of interdisciplinarity; four of its five pieces are collaborations by scholars sand practitioners in medicine, nursing, communication, biology, theology, international affairs and conflict resolution. and all of the articles raise complex queries, tell difficult stories or ask the complex and uncomfortable questions for which qualitative research is best equipped. as many of you already know, qualitative research is not for the faint of heart. it is reflexive, positioned and like life itself, often messy and focused not on producing easy answers but on the very process of questioning. it is, at best, acutely aware its ontological consequentiality. unlike research studies under positivist or post-positivist auspices, true qualitative research does not separate the observer from the lived experience of those whom she observes. rather, it is by understanding the ways in which our own research practices bring forth the very world in which we live that qualitative researchers have a stake in understanding the very reflexive dynamics of how we constitute the world makes us. consider the traditional process of knowledge construction in medicine and healthcare and how, in these very social and human sciences, we unproblematically take notions of scientific evidence as detached from the very measurements, screenings, and processes of lived experience in which knowledge-making is situated. data, findings, reports are always written in the third person omniscient language of science, concealing writers, bodies, lives. we try to fit ourselves into the spaces offered by questionnaires, rather than finding questionnaires designed to fit us. though evidence-based has become a popular phrase, for example, it works by pronominal omission; and yet it is always evidence for someone, by someone, and in a particular context with very real and life changing consequences. by the same token, that of patient (including the popular patient-centered), disadvantage, vulnerable, and so on are constructs – that is, categories that create the very situations they purport to describe. by way of our research findings and discussions, these categories can either re-enter the world as natural, or we may use research as a process in which to examine the social dynamics of what it means for these terms to categorize and create what wittgenstein called forms of life, that is, to describe, as well as prescribe conditions of our very being and courses of action that implicate courses of actions, policies, social change. as erin castelloe tells us in an intensely personal and beautifully written opening article (and the second part to this first one is already in the works!) she is a woman at a crossroads, facing important decisions as to how to (re)construct her career and personal life. metaphorically, working in healthcare is a matter of always being at a crossroads. medicine, she writes, is practiced by imperfect human beings, most of whom are dangerously overworked. the stories that enrage me are those in which doctors dismiss people’s concerns without a complete assessment: the man without insurance who is obviously having a heart attack but is discharged from urgent care welcome to qualitative research in medicine & healthcare mariaelena bartesaghi department of communication, university of south florida, tampa, fl, usa correspondence: mariaelena bartesaghi, department of communication, university of south florida, 4202 e fowler ave cis 3057, tampa, 33620 fl, usa. tel: +1.813.974.2145 fax: +1.813.974.6817. e-mail: mbartesaghi@usf.edu key words: qualitative research in medicine & healthcare; editorial; interdisciplinarity. received for publication: 9 february 2017. accepted for publication: 9 february 2017. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright m. bartesaghi, 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:i-ii doi:10.4081/qrmh.2017.6642 qualitative research in medicine & healthcare 2017; volume 1:i-ii no nco mm er cia l u se on ly (…); the young woman with new-onset, nocturnal seizures who is diagnosed with a supra-tentorial issue (anxiety and/or personality disorder) without a neurological exam, let alone a sleep study and nocturnal electroencephalogram (eeg).1 in a sometimes difficult to read, and yet relentlessly hopeful piece, life partners and co-authors davidson and davidson appear to engage in a symbolic dialogue with castelloe, and with the notion of evidence itself, when narrating about their own crossroads, in a moment of waiting what they knew would be difficult news about their unborn baby. they write how: the concept of evidence based medicine rests upon the knowledge of what treatments have worked in the past and are predicted to work in the future. however, when there is no evidence and no one can predict what will happen, it is easy to panic, avoid the situation or despair [yet] there is life in the not-knowing.2 in qualitative studies, narratives are not the subject of examination, but a research method in itself. in making sense and giving order to experience, researchers engage us in moments of social life in ways both vivid and situated, setting aside canonical notions of generalizability in favor of true validity – or the ability of personal experience to speak truth to anonymity, and to demonstrate how scholarship is always personal. in this vein, the fascinating study by riva-mossman and verloo notes that seniors’ stories of hope and healthy aging reflexively create the very hopeful and healthful conditions they narrate into being. the authors note that: seniors may consider themselves as healthy within their own meaning systems irrespective of chronic illness and that the most appropriate people to define what healthy aging means are seniors themselves.3 much like riva-mossman and verloo, the analysis by smith-cavros, avoki-wuaku, wuaku and bhullari endeavors to understand the social accounting practices of a population in order to make bottom up policy changes. smith-cavros et al.’s rich ethnographic and interview analysis of the culturally situated meaning of health insurance to village elders in rural ghana reveals that though insurance may sound like a good thing in theory, its practicality leaves a lot to be desired. speaking to their own research commitments, the authors write that their project: is shaped by our position (as a research team) that healthcare is a human right and that a properly functioning and funded program providing universal coverage to all citizens (with hands-on citizen participation) can promote improved physical and social well-being.4 the study sheds new light in the way policy makers may employ accounts to make effective changes in communities where health insurance is not used as proponents wish it could be. the final article in this issue, by gathercoal, gathercoal, seegobin, and hadley combines quantitative and qualitative approaches in an innovative and creative research design. the authors challenge the view that disabilities are either romantic conditions that render those affected with them special in some way or, on the other hand, horrible biological or physical handicaps that dehumanize them instead of seeing these individuals as ordinary people facing extraordinary, and often society-created obstacles.5 i find no better way to conclude this introduction than to use these authors commentary on reflexivity, constitutiveness, and consequentiality in research, and the fearlessness of qualitative researchers to be aware of these issues. as gathercoal et al. so aptly note, even traditional concepts such as effective come embedded with specific cultural and social perspectives with biases, adopting positions which take for granted ill-defined social goals and unintended consequences. who, for example, gets to determine just what is best for both clinicians and for clients?5 in leaving you to this and many more thought provoking questions and insightful studies that compose this first issue, i extend an invitation to all of you who are reading that you will submit to our journal, and join in the exciting, innovative, rigorous and spirited research conversations that will take place in this forum. references 1. castelloe e. finding myself in medicine. qualit res med healthc 2017;1:6301. 2. davidson lg, davidson a. the anvil: a crushing conversation. qualit res med healthc 2017;1:6086. 3. riva-mossman x, verloo h. explorative healthy aging approaches fostering social innovation: thematizing life course narratives of older women participating in a documentary film. qualit res med healthc 2017;1:6199. 4. smith cavros e, avotri-wuaku j, wuaku a, bhullar a. oh, as for the health insurance…it’s good, but…: rural elders in agate, ghana, discuss the national healthcare insurance scheme. qualit res med healthc 2017;1:6300. 5. gathercoal ro, gathercoal ka, seegobin w, hadley s. nurturing constructive change that works: a critical theory-informed model for transforming health service psychologists’ views of people with disabilities. qualit res med healthc 2017;1:6391. [page ii] [qualitative research in medicine & healthcare 2017; 1:6642] editorial no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2021; 5:10168] [page 23] in her final editorial for qualitative research in medicine and healthcare, mariaelena bartesaghi described how her health condition prevented her from continuing as editor-in-chief. dr. bartesaghi described herself as a character in the type of stories that we research and report about in this very journal. like so many people whose stories have been told and reflected upon in qrmhsince dr. bartesaghi founded the journal in 2017, her story “is one about the burdens of being a patient as well as a human being who suffers” (p. vi).1 i am honored to carry the journal forward as the new editor, but i wish that it could have come to me through different circumstances. in a way, i am experiencing a facet of health narrative that i have never considered before. when our family, friends, and colleagues become unable to do the things that they love because of illness, what does it mean when we take their place? what are we to feel inside about assuming the role of another who left their position, not because they wanted to, but because illness had left them unable to proceed any further? i am fortunate in that dr. bartesaghi graciously reminded everyone participating in this journal about what it means to keep on with the work that she initially envisioned and pursued through four volumes. “another body,” she wrote, “will continue my work, your work, the work of qualitative research in medicine and healthcare in examining, validating, and ultimately speaking of the experiences of those [who experience illness] in these pages” (p. vi).1 as i write these words, i can’t help thinking that dr. bartesaghi’s mention of “another body” is an apt phrase indeed. the body that is me writing these words has already spent much of the summer and well into the fall in the role of editor-in-chief (such a lofty title!). on the other hand, “body” is also a collective term. all of us who work on this journal as writers, reviewers, editorial board members, publishers, copyrighters, and, of course, readers, inhabit our singular bodies, yet we also constitute a communal body with shared interests in the intersectionality among qualitative research, health, illness, and the human condition(s). this is our journal, and i look forward to working with you all in keeping dr. bartesaghi’s vision of what qrmh the vibrant journal that it is. like anyone who has conducted qualitative research knows, our chosen method of scholarship is highly iterative. moving forward almost always requires simultaneously looking backward to where we have come from and ascertaining how we ended up where we are in this moment. in that iterative spirit, i have taken the opportunity to read with deep appreciation the editorial that dr. bartesaghi provided for the first issue of qrmh (2017).2 in that brief essay, dr. bartesaghi provided the foundation for what it means to do qualitative research with respect to communication, health, and medicine: as many of you already know, qualitative research is not for the faint of heart. it is reflexive, positioned and like life itself, often messy and focused not on producing easy answers but on the very process of questioning. it is, at best, acutely aware [of] its ontological consequentiality. unlike research studies under positivist or post-positivist auspices, true qualitative research does not separate the observer from the lived experience of those whom she observes. rather, it is by understanding the ways in which our own research practices bring forth the very world in which we live that qualitative researchers have a stake in understanding the very reflexive dynamics of how we constitute the world...(p. i)2 mindfully positioned and messily bent on questioning our own assumptions about health, illness, patients, providers, the medical industry, government policies, and the ways that all those things are embedded in cultural systems shaped by history, economics, epistemology, and many other factors, we move forward, backwards, and sideways following our winding, twisting, circular, and sometimes overlapping paths. it is not hard to place each of the articles featured in this edition into dr. bartesaghi’s vision of what we do as researchers and how qrmh serves as an important platform for sharing our work with other scholars and with the world at large. sylvie lafrenaye and her co-authors illustrate the value of qualitative research with respect to healthcare in multiple ways.3 first, they stress the particular value that qualitative research proffers to our understanding of the exeditorial warren bareiss department of communication, university of south carolina upstate, spartanburg, south carolina, usa correspondence: warren bareiss, department of communication, university of south carolina upstate, spartanburg, south carolina, usa. e-mail: bareiss@uscupstate.edu received for publication: 5 october 2021. accepted for publication: 5 october 2021. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2021 licensee pagepress, italy qualitative research in medicine & healthcare 2021; 5:10168 doi:10.4081/qrmh.2021.10168 qualitative research in medicine & healthcare 2021; volume 5:10168 no nco mm er cia l u se on ly perience of illness, experienced not just by patients, but also by their caregivers: questions of meaning and of “why me?” inevitably arise. medical science is interested in the “how?” of the disease (biological and genetic explanations), while parents wonder about the “why?”. unfortunately, too often, the discourses on the “how” and the “why” do not overlap. furthermore, the combination of content and rigorous methodology provided by lafrenaye et al. are a model of how qualitative research can be done. data collection is meticulous and clearly explained, but the content of the stories is what really hits hardest as parents try to make sense of and garner meaning from the imminent deaths of the children. words alone cannot express the feelings and experiences of those parents. narrative analysis, however, brings us closer to perceiving the range of ways that parents engage with, survive, and find meaning amidst ongoing tragedy and inevitable loss. the authors close with practical advice for how healthcare practitioners could most sensitively and effectively communicate with caregivers of life-limited children.3 while lafrenaye et al. discusses the benefit of mutual narrative construction between caregivers and practitioners, linda behar-horenstein et al. approach narrative co-construction in a very different context.4 behar-horesntein et al., construct a research success story through analysis of interview data collected over two years. specifically, they report on a research center partnership featuring specialists from multiple fields of study, but all sharing the same goals pertaining to reducing cancer disparities and promoting cancer disparity research. behar-horenstein report remarkable success measured by an enormous number of publications and grant awards generated by the research center. as the authors point out, qualitative research is uniquely positioned to understand why the center functioned so well, albeit after some initial settling while providing a model for similar ventures elsewhere: the findings offer discernment into [participants’] feelings, beliefs, and actions relative to interdisciplinary, multi-university collaborative efforts. building a contextualized, real-time understanding for how and why team scientists perceive collaboration effectiveness and subsequent responses may augment the rate and pace of future center productivity as we use these findings to reify and normalize team development processes. after all, we cannot improve that which we cannot assess or understand.4 “narrative” takes a more ominous tone in nynne barchager’s article about discursive patterns between patients and healthcare providers are institutionally conditioned amidst danish cardiac care.5 combining textual analysis with ethnographic observation, barchager illustrates how official texts “happen and are active in the interactions” between patient and provider: in [official] documents, the patientas an institutional category is characterized by a lack of knowledge. the notion of educating the patient can be seen as a ruling relation as it originates beyond the local context of the rehabilitation program, but structures the actual interactions between healthcare professionals and patients. it organizes consciousness and actions as it orients healthcare professional….5 the “general narrative of progress” supported by medical research provides a dominant framework within which patients who are unable to follow medical advice—due to lack of money, for example—are rhetorically held accountable for what can only seem to be (from the medical perspective) poor choices.5 in their analysis of women’s perceptions of risk associated with familial breast-ovarian cancer, mariya lorke et al. specifically focus on risk narratives, demonstrating that narrative construction and presentation is part of an ongoing process in which risk assessment is entangled with sometimes conflicting perceptions of identity, fate, and family.6 for the women interviewed in the research, genetic testing is more than an event that happens to a woman. rather, it is a process that brings…attitudes, values, and ideas to the surface. this is the reason to suggest that patients’ explanatory models of risk, their general attitude towards health and disease, their lived experience and biographical background should be taken into consideration…6 health literacy plays a crucial role in negotiating stress associated with genetic testing, lorke et al. explain; being health literate, women are more able to balance perceptions of the health system as a means of healing and as a source of anxiety.6 each of the articles in this issue develop qualities bookended by mariaelena bartesaghi’s premier and closing editorials. in their different, yet overlapping ways, articles collected in this issue each embody (i use that word deliberately) the self-reflexive, messy mindfulness that we expect from solid qualitative research. i am proud to share them with you as we carry dr. baresaghi’s work forward. references 1. bartesaghi m. qualitative research in medicine and healthcare: the (politics of) the illness experiment. qual res med healthcare 2020;4:v-vi. 2. bartesaghi m. welcome to qualitative research in medicine and healthcare. qual res med healthcare 2017;1:i-ii. 3. lafrenaye s, dumas s, gosselin e, et al. parents living with a child afflicted by a life-limiting medical condition: typology of their narrative identity. qual res med healthcare 2021;5:9174. 4. behar-horenstein ls, richey jm, smith ud. assessing collaboration among team scientists within a triadic research center partnership. qual res med healthcare 2021;5:9724. 5. barchager n. the ruling relations of patient involvement in cardiac rehabilitation programs. qual res med healthcare 2021;5: 9489. 6. lorke m, harzheim l, rhiem k, et al. the ticking time-bomb. health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; a qualitative study. qual res med healthcare 2021;5:9647. [page 24] [qualitative research in medicine & healthcare 2021; 5:10168] editorial no nco mm er cia l u se on ly layout 1 qualitative research in medicine & healthcare 2022; volume 6:xxx [qualitative research in medicine & healthcare 2022; 6:10654] [page 30] in the previous issue of this journal (volume 5, issue 3), i described qualitative research in medicine & healthcare as a “helping journal.” by that, i meant that qrmh welcomes manuscripts from a range of specializations, and as editor, i am glad to assist writers wherever they are within that range. some authors, like myself, are a combination of scholar and teacher, rarely, if ever working directly with patients or healthcare providers (hcps). often, we specialize in communication or related fields in the humanities and social sciences. teacher/scholars from r1 universities who have high research expectations generally need the least amount of writing assistance due to the high demands placed on their research output. those from “teaching universities”—an arguably strange appellation—who are more pressed by extremely time-consuming classroom responsibilities sometimes need more assistance in developing their theoretical approaches, clarifying their methodologies, and/or explaining their findings and takeaway concepts. i am happy to help both of those types of teacher/scholars as much as i can. authors whom i take special pleasure in working with, however, are at the other end of the spectrum: those who are some combination of scholar and hcp. often, these writers are new to qualitative research, and because they typically don’t teach or conduct qualitative research on a daily basis, they are, understandably, writers who need the most guidance. i particularly enjoy working with this latter group because their experiences and skills are most removed from my own. as a communication teacher/scholar, i have so much to learn from hcps. i marvel at the things they do every day to improve patients’ lives. their direct impact on people’s quality of life, day in and day out, is something that i can only imagine from my position as more of a theorist who barely engages directly with suffering, challenges, joys, and triumphs encountered in family practice, emergency medical service, or among hospital wards. in a way, qrmh is a meeting place of complementary professional cultures represented by these two different groups of writers. for teacher/scholars, people are often conceived of as target audiences, communities, or representations of larger populations—i.e., fairly abstract conceptions. the focus, or at least the inspiration, for the hcp/scholars’ research, however, tends more often to be people who they know as individuals, sometimes as patients and sometimes as colleagues. this is not to say there is a firm line between the two groups, of course; rather, i am thinking in terms of general patterns that i have witnessed over my past ten months as editor of qrmh and having reviewed several times for qrmh previously. being in the middle of this crossroads is one of the greatest pleasures of my career to date, now going on 25 years. recently, i had the pleasure of helping an hcp/scholar think about how to best approach his research. in a way, i felt absurd offering advice to a person who makes lifeand-death decisions every day, but the author really wanted to learn how to best improve his approach to qualitative research. he listened intently to what i had to say, and the fact that this person respected my opinion and wanted to learn from my experience affirmed the value of revealing and explaining deep structure via qualitative research in medicine and healthcare warren bareiss department of communication, university of south carolina upstate, spartanburg, south carolina, usa correspondence: warren bareiss, department of communication, university of south carolina upstate, spartanburg, south carolina, usa. e-mail: bareiss@uscupstate.edu key words: editorial; helping journal; methodologies. received for publication: 31 may 2022. accepted for publication: 31 may 2022. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2022 licensee pagepress, italy qualitative research in medicine & healthcare 2022; 6:10654 doi:10.4081/qrmh.2022.10654 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. no nco mm er cia l u se on ly [qualitative research in medicine & healthcare 2022; 6:10654] [page 31] editorial what we on the teacher/scholar side do all the time. i was able to help the author communicate the significance of day-to-day human experience that he witnessed on a micro level and to share that significance with fellow writers and readers of qrmh. during the conversation, we created a middle ground where we were able to share our respective knowledge and skills, merging communication theory and medical practice. this sort of continual recreation of a discursive space is what qrmh is all about. it illustrates what we in the communication field call the “transactional model of communication.” prior to our zoom chat, the author had emailed me a few times, and i could see that he was struggling with understanding the phenomenological core of qualitative research. the author had made the common mistake of thinking that phenomenology is trying to get inside other people’s heads and then explaining things from their perspectives, but i think it is more than that. trying to explain things from another person’s point of view is always doomed to failure because we are not that person. we can never truly represent another person’s experience because i) we have not lived all of their lives that condition their reactions to that experience and ii) because no matter how well we describe another person’s perspective, our description is always conditioned by our own lived experiences. as an undergraduate anthropology student way back in the 1980s, i was fortunate to have had teachers who assigned difficult reading material, and lots of it. the reading that had the most impact on me, and to which i return again and again in thinking about my work, is clifford geertz’s classic description of a balinese cockfight.1 for geertz, the cockfight was much more than a means of gambling via what we now consider a cruel abuse of animals; it was a way of addressing longstanding tensions and rivalries among extended families. this is the way a lot of things in life are so that behaviors that might seem superficial have much more profound “deep structures” resonating within cultures and framing people’s lives. the job of the interpretive researcher is to bring that deep structure out and explain it, using the theoretical and methodological tools at our disposal. the older i get, the more i find myself explaining complex concepts through metaphor, so the night before my scheduled zoom meeting with the author, i tried to think of an apt metaphor for how to take a phenomenological approach to research on patients’ experiences, attitudes, and worldviews. the metaphor that i eventually thought of was that of a sculptor working with a huge chunk of rock. i explained that the rock that the sculptor works with is the data we have before us as researchers. it is a thing in itself with its own form. the job of the sculptor is to bring a new form from the raw stone, just as the job of the researcher is to find and draw out form from the data. the sculptor’s tools are hammers and chisels of different sizes, shapes, and weights, each for their own purpose. our tools are the theoretical models and various methods used to find and explain patterns (and exceptions to those patterns) in our data. and just as no two artists will make the exact same sculpture—because their experience, skills, and tools are different—so, too, different researchers can interpret the same situation, even the same data, in different ways. in varying degrees, using different approaches, each of the articles in this issue of qrmh succeeds at touching upon deep structure with regard to their respective research settings. mike alvarez brings out the deep structure of discourse among people who consider or who have considered suicide in “ʻlife is about trying to find a better place to live:ʼ discourses of dwelling in a pro-recovery suicide forum.”2 alvarez looks at over 2,000 posts on a pro-recovery, online suicide forum, and using cultural discourse analysis, recognizes a common theme regarding space— and its human dimension, community. space and community are not always positive experiences, as alvarez reveals in his discussion of opposing notions of entrapment, on one hand, and safety, on the other. discourse on a pro-recovery suicide forum thus works in multiple dimensions simultaneously: as a source of shared information and encouragement and as an ongoing discussion about the world we inhabit. indeed, even those dimensions are only two ways of thinking about suicideforum.com, and other interpretive scholars could draw forth many other dimensions within its deep structure. while alvarez is writing primarily from a theoretical perspective as a teacher/scholar, claudine tshiama, gédéon bongo, oscar nsutier, and mukandu basua babinto approach their article, “lay knowledge regarding the prevention of complications related to childbirth: perceptions of congolese pregnant women,”3 from more of a clinical point of view. their study of how pregnant women weigh the value of lay vs. professional medical knowledge is descriptive at one level, demonstrating patterns in beliefs about traditional ways of avoiding complications in pregnancy, but there is more beneath the surface. their analysis reveals an ongoing frustration among participants about how traditional forms of healthcare during pregnancy are largely ignored by medical staff and how this causes some degree of cognitive dissonance among pregnant patients. significantly, participants express eagerness to share lay customs with medical staff so that the staff, in turn, can build respect and appreciation for applicable traditional practices into their prenatal workshops. the takeaway for practitioners is that the transactional model of communication can be a reality in prenatal training so that lay and professional practices can be shared in mutually beneficial ways. similarly, luke hughes, lisa alderton, and rachel m. taylor offer practical takeaway lessons from their analysis (“evaluation of the family liaison officer role during the covid-19 pandemic”),4 although instead of patients, hughes et al. examine interviews of professional hcps who were temporarily placed into a newly created role no nco mm er cia l u se on ly [page 32] [qualitative research in medicine & healthcare 2022; 6:10654] editorial during a time of immediate crisis. as with tshiama et al., hughes and his colleagues dig deeply among their transcripts to reveal patterns in the ways that the family liaison officer (flo) position functioned well during initial implementation at the start of covid-19 and to suggest where improvements are needed. given that the flo role was developed on the spot during a crisis, hughes, et al. use uncertainty reduction theory as a conceptual tool to reveal and explain how flos dealt with unpredictable circumstances in different ways, depending on their respective professional training. hughes and his colleagues also leverage their data and analysis to make a closing argument for developing the flo role into a permanent, fulltime, professional position. taken together, these articles illustrate the range of professional perspectives, traditions, and expectations comprising the community of researchers here at qrmh. readers will find among each article a combination of theoretical and methodological tools used to reveal, demonstrate, and examine lessons learned from everyday experiences lived by the people who are served by and who serve in the medical professions. references 1. geertz c. notes on the balinese cockfight. in the interpretation of cultures, geertz c (ed). basic books, 1973; p. 412453. 2. alvarez m. life is about trying to find a better place to live:’ discourses of dwelling in a pro-recovery suicide forum. qual res med healthc 2022;6:10437. 3. tshiama c, bongo g, nsutier o, babinto mb. lay knowledge regarding the prevention of complications related to childbirth: perceptions of congolese pregnant women. qual res med healthc 2022;6:8740. 4. hughes l, alderton l, taylor rm. evaluation of the family liaison officer role during the covid-19 pandemic. qual res med healthc 2022;6:10287. no nco mm er cia l u se on ly layout 1 jan doolittle wilson doesn’t invite as much as she compels the readers to do the uncomfortable, complicated, and necessary work of reimagining disability. writing not only as a scholar of disability studies, but also as a disabled person, the granddaughter of a disabled woman, and the mother of a disabled child, wilson uses an autoethnographic approach to not only get able-bodied readers to see disabled people in a new light, but also, and above all, to turn their gaze towards themselves and question their own understanding of disability. as wilson explains, the autoethnographic approach is “defined as one in which an author draws on personal experiences to analyze and create meaning about larger social, cultural, and political phenomena” (p. 6). after providing an overview of the main models of disability, wilson reflects on and analyzes the experience of her grandmother, her own disability, and especially the challenges she encounters as she mothers her autistic daughter in order to help us understand how “meanings of disability are formed in specific contexts among specific communities of people” (p. 6). in this disability view of the world, disability is not an apolitical medical condition. “definitions of disability,” according to wilson, “are not simply the result of some universal, objective process, but the product of relations of power that are historically and socially contingent” (p. 21). this view of disability frees disabled people and their caregivers from the traditionally imposed expectation to overcome their disability; in contrast, wilson argues in favor of social and political action to remove access barriers that create disability. if the task of radically reconceptualizing disability seems a daunting one, wilson makes a very compelling case, braiding her own experience with an impressive review of gender, disability, and queer history and scholarship. the book is divided into four parts: identifying disability, (re)imagining disability, locating disability, and mothering disability. each part consists of two chapters. in the first chapter, wilson reviews three frameworks for defining disability. the medical model “depoliticizes disability by framing it as an individual problem or disease that is best approached through curing, treating, normalizing, or eliminating the “ ‘afflicted’ individual” (p. 23). in the social model, “disability is not an individual problem, but a human variation that needs to be accommodated through the elimination of attitudinal and institutional barriers that interfere with the opportunity of all individuals to participate in society” (p. 32). this is the reason disability identity politics, the third disability framework wilson reviews, defines disability as a “social location, a situated knowledge from which hegemonic and oppressive claims about disability can be questioned, critiqued and overturned” (p. 34). the rest of the book is informed by the tension between the medical model and social model of disability, as well as the framework of disability identity politics. in “cripping disability identities” (chapter 2), wilson points out that many theories of disability studies are informed by experiences of people with physical disabilities, while people with neurological disabilities remain discursively marginalized. wilson draws attention to people with review of jan doolittle wilson’s becoming disabled: forging a disability view of the world (lexington books, 2021) monika shehi herr department of languages, literature, and composition, university of south carolina upstate, spartanburg, south carolina, united states correspondence: monika shehi herr, department of languages, literature, and composition, university of south carolina upstate, 800 university way, spartanburg, south carolina, united states. e-mail: mfshehi0@uscupstate.edu key words: disability theories; autoethnographic research; disability rhetoric; gender studies. conflict of interest: the author declares no conflict of interest. received for publication: 7 december 2022. revision received: 7 december 2022. accepted for publication: 7 december 2022. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2022 licensee pagepress, italy qualitative research in medicine & healthcare 2022; 6:11069 doi:10.4081/qrmh.2022.11069 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. [page 64] [qualitative research in medicine & healthcare 2022; 6:11069] qualitative research in medicine & healthcare 2022; volume 6:11069 no nco mm er cia l u se on ly mental “illness,” a term “challenged by psychiatric survivors and mad pride proponents” who see it as a “cultural fiction invented by modern psychiatry” and instead see mental illnesses as “neurodivergences, or minds that process information and emotions in ways that differ from but are not inferior to neurotypical minds” (p. 56). socially locating and utilizing the discomfort caused by the pejorative term “cripple,” crip theory, wilson explains, reclaims disability identity from the assumption that “we are all disabled” arguing that, as disability scholar lennard davis puts it, “it is possible to say that we are all disabled by oppressions of various kinds” (qtd. in wilson, p. 68). thus, crip theory makes room “for chronic illness, neurological disabilities, fatness, madness, invisible disabilities, for those who seek a cure and those who do not” (p. 63). as such, crip theory has the potential to “strengthen disability activism by bringing together diverse individuals and groups committed to dismantling systems of oppression and pursuing justice for disabled people” (p. 63). “disability on display” (chapter 3) examines the resistance the disability alliance faces, beginning with media discourse and representation. as wilson writes, “[media] serve as a tool of self-actualization, influencing the way that we think about ourselves in relationship to the images and messages we see reflected back at us on the page or screen” (p. 79). furthermore, “for those whose interactions with disabled people are infrequent, narrow, or perfunctory, media representations are particularly knowledgeable in creating knowledge and shaping attitudes about disability” (p. 79). dissecting the rhetoric of various movies, public health announcements, and the jerry lewis muscular dystrophy association (mda) labor day telethon, wilson shows how stories about disabled people authored without disabled people reinforce damaging stereotypes while promoting ableist attitudes. wilson argues that only through the inclusion of disabled people in every aspect of the creation of their stories (including the casting of disabled actors) can an accurate representation of disability as “an unjust social condition to be remedied by political action” be achieved (p. 83). the goal of political action is the removal of institutional barriers to access, and in “disability and inclusive education” (chapter 4), wilson directs her attention to education, specifically addressing how classrooms fall short of true inclusivity. drawing from her experience of mothering an autistic daughter, wilson points to two failed models of supposedly inclusive education: placing disabled children in regular classrooms without sufficient support or, conversely, placing them in separate needs classrooms. after her daughter, zoey, had been expelled from several private schools, she was enrolled in their neighborhood’s public school “on the assumption that she would be supported by a range of services and programs mandated by law” (p. 114). instead, zoey was placed in a regular classroom with no support while the school insisted on a lengthy evaluation process “despite the recommendations of our private doctors and therapists” who “had already evaluated and diagnosed zoey” (p. 114). as a result, zoey’s “frustration and anxiety led to frequent, violent outbursts, which resulted in social rejection from her peers and abandonment of all education from her teacher” (p. 114). wilson recounts zoey’s experiences in harrowing detail. one day, for example, she went missing for an hour without anyone noticing (p. 115), while another day, she almost managed to run away from school because she was allowed to go the bathroom unsupervised by her untrained aide who was hired only after a teacher wrestled zoey and pinned her to the floor (p. 115). this account is important because it exposes the systemic flaws of a pseudo inclusive education that “had failed on every level to accommodate” an autistic child. an education system that places a disabled child in a regular classroom “without any real support, no individualized attention to her needs, little or no training of staff, and utter failure to teach students the value of human diversity” (p. 116) is not truly inclusive. the solution, according to wilson, is not the special education classroom with its “limited, less rigorous curriculum” and “lower expectations that can lead to diminished academic and postsecondary opportunities, less access to non-disabled peers, and social stigma” (p. 118). instead, wilson challenges the readers to re-envision the inclusive classroom as a place that should accommodate not only the needs of disabled students, but also the diverse learning styles of regular students. wilson sees the concept of the universal design for learning (udl) “as the best application of the social model of disability to educational approaches” (p. 125). udl requires educators to think of “accommodations and adaptive technologies” not only “as useful and appropriate” for students with disabilities, but also equally helpful for “enhancing the academic performance of all students” (p. 126). in concrete terms, udl requires educators to provide “(1) multiple methods of representation of course content, (2) multiple means for students to express what they know, (3) and multiple methods for motivating students to learn” (p. 128). wilson writes that her discovery of udl made her reconsider her “fundamentally flawed” view of accommodations and transform her teaching (p. 126). the explanation of how she redesigned a course on harry potter to reflect the principles of udl provides a helpful example of how to transform traditional education according to the social view of disability and achieve the promise of the verb “to educate.” if we are to rely on its literal meaning, “to educate” means not to treat students as empty or defective receptacles of information, in keeping with what paul freire called in the pedagogy of the oppressed the “banking” concept of education, but to recognize the knowledge that students bring to the classroom and help them contribute to the collective learning process. i found chapter 4 very helpful; however, it is “burrowing within disability” (chapter 5) and “making disability home” (chapter 6) that provided both the most compelling reading and the most important insights. to explain her autoethnographic approach, wilson writes, “i draw on my own distinct experiences–particularly how [qualitative research in medicine & healthcare 2022; 6:11069] [page 65] book review no nco mm er cia l u se on ly parenting zoey has led to my ‘disability becoming’—and my social location to make original knowledge claims about the social and political meanings attached to disability and the meanings and histories and lives of disabled people” (p. 6). the knowledge she contributes in chapters 5 and 6 is embedded in her autobiography. as such, it helps readers to better understand the theoretical principles she discusses in the first two chapters. in chapter 5, wilson writes movingly about her deep connection with her grandmother who experienced a serious brain injury following a car accident. she explains that watching her mother care for her grandmother helped her understand the concept of “access intimacy” or “those relationships in which disabled bodies and minds can feel safe and comfortable” and “where help and support are understood as just another form of the interdependency that characterizes all human relationships” (p. 160). the passage that i found particularly moving is the one in which young jan’s longing for her grandmother overcomes the fear of her grandmother’s injuries and leads her to seek her grandmother’s presence and rediscover her grandmother’s love (p. 158). as she points out, after the accident, “[i]n so many ways, grandmom remained the same, but it became increasingly apparent that the people around her had not” (p. 159). wilson watched with “puzzlement and eventually with hurt and anger how differently some of her friends and even family members treated” her grandmother (p. 159). her grandmother became disabled because the world around her valued her based on “how closely she could approximate her preinjured self, and how well she could reinhabit what had become for her an often uninhabitable world” (p. 160). furthermore, wilson points out, her grandmother was disabled by traditional gender roles. after the accident, “she was unable to perform the activities that characterize society’s definition of ‘true womanhood’” (p. 162). this caused her “frustration and sorrow” and “shifted” her relationship with her husband (p. 162). however, through her own mother’s model of access intimacy, wilson learned as a young girl to not allow the world to change her own view of her grandmother permanently. as a result, she was able to preserve a mutually sustaining relationship in her life. it is this model of mutually sustaining dependency that ultimately informs wilson’s relationship with her own autistic daughter, zoey, described and analyzed in vivid detail in chapter 6. in the introduction, wilson writes that she has tried to avoid “the trappings of the ‘typical’ memoir written by parents of children with disabilities, many of which have the tendency to reify rather than challenge oppressive cultural models of disability” by emphasizing “grief over a child’s diagnosis” and framing their child’s disability “at least in part through a medicalized model” (p. 9). according to alison piepmeier, these memoirs “represent the child not as a person but as a problem with which the parents have to grapple” (qtd. in wilson, p. 10). wilson does not flinch from describing the challenges that zoey faced earlier on. sharing passages from her own diary and zoey’s (with zoey’s permission), wilson describes anxieties and injuries that, i confess, made me wince. but perhaps wilson wants us to wince, just like the essayist nancy mairs, whom wilson quotes in chapter 2 to explain to possibilities of cripple theory. according to mairs, “people–crippled or not–wince at the word ‘cripple.’ perhaps i want them to wince” (qtd. in wilson, p. 62). likewise, rather than presenting her daughter as a tragic problem her parents have to grapple with, wilson wants us to face our own discomfort with non-normative bodies and behaviors. instead of allowing her daughter to become disabled by our ableist reaction, she wants us to become comfortable with the diversity of human experience. the takaway point from chapter 6 is not to present herself as a model mother, or to speak for zoey’s experience, but rather to show how zoey transformed her view of the world and human relationships. “and though i did not realize it during the early years of zoey’s diagnoses and the beginning of my research,” wilson writes, “i was starting to form a neurodiverse perspective” (p. 193). this perspective “understands autism as a highly variable neurological difference that is just as valid and deserving of social acceptance and equal treatment as any other neurological difference within the broad landscape of human diversity” (p. 193). this does not lead her to shun all therapy, but rather to create a list of “non-negotiable rules” by which she evaluates the “the methods, rhetoric, and attitudes of potential care providers” (p. 193). specifically, a therapeutic approach had to: i) respect zoe’s personhood; ii) teach zoey skills for better coping with her environment, not focus on changing her or making her appear to be “typical”; iii) recognize zoey as an expert of her experience and therefore include her in the problem-solving process; iv) recognize as valuable and worthy my perspective as zoey’s mother and include me in the problem-solving process; v) teach me how to be a better advocate for zoey; vi) give zoey the tools to develop self-advocacy; vii)recommend medication only following and in conjunction with the implementation of various approaches. (p. 193) in addition to finding this list utterly sensible, i also thought of it as a political manifesto of sorts. just like wilson’s refusal to keep zoey in a public school that did not accommodate her needs at any level and her decision to homeschool zoey until she “managed–after a lengthy and costly battle–to transfer her to the only elementary school in our district that provided a full-time, self-contained special education program run by a team of highly trained staff” (p. 116), these non-negotiable rules constitute a demand that we recognize that disability “occurs when a body enters a space that was not meant for it” and “when we assume that navigation of such spaces is an individual instead of a public responsibility” (p. 32). zoey’s academic success validates wilson’s choices as a parent and an educator; however, wilson admits that de[page 66] [qualitative research in medicine & healthcare 2022; 6:11069] book review no nco mm er cia l u se on ly spite the significant challenges her family faced, her family had access to support systems many families don’t. “disability and constructs of motherhood” (chapter 7) and “refiguring motherhood through a disability lens” (chapter 8) are, therefore, a call to action to reconsider not only disability, but also the constructs of motherhood and the support we fail to provide mothers. many first-time mothers, myself very much included, will recognize the painful cognitive dissonance wilson describes when her experience utterly failed to match her media-fueled fantasies of the early days of babyhood (p. 218). these fantasies seem to serve as cover for the institutional failures to provide mothers with the support they need, from the time necessary to allow a woman’s labor to take its natural course, to the shortcut of recommending formula instead of breastfeeding to make the baby meet normative targets of weight gain, to the failure to provide working mothers with breastfeeding breaks. viewed in this light, motherhood itself is a form of becoming disabled. just like wilson’s grandmother after the traumatic brain injury, mothers are valued based on their ability to inhabit an increasingly uninhabitable world. mothers are “expected to neglect their own needs, desires, and even health in service of their children” and those “few, brave mothers who dare to intimate publicly that they might be deserving of a bit of self-care often face social punishment” (p. 241). in this light, self-care demands recognition of mothers’ welfare as social welfare. as wilson points out, too often “we think of equality as a goal achievable by individual will and adjustment rather than a project that requires the dismantling and reconstruction of entire economic, social, and political systems in order to make these systems work for the greatest diversity of human beings” (p. 247). as i was reading this book, i found myself constantly reevaluating my own experiences and observations. i thought of my maternal grandfather, who lived the last four years of his life with an unidentified form of dementia, and my father who lived for a long time with undiagnosed dementia and died after experiencing a shorter, more acute, and more disabling form of it. both had been political prisoners in albania during communism, my father convicted of “agitation and propaganda” and condemned to five years of hard labor when he was only fifteen years old. during my first visit to albania after his death, i visited a memorial to the politically persecuted and was struck by the information that one of the consequences of the trauma many political prisoners suffered was “loss of their mental faculties.” the relationship between trauma and disability is one that wilson draws particular attention to when she discusses her grandmother’s life, and she does not shy away from the uncomfortable questions this relationship raises. as she writes, in “refuting the ableist assumption that disability is always tragic, we should not insist that disability is never tragic” because when we do so “we discredit the experiences of those with histories of trauma and violence” (p. 149). i appreciated wilson’s observation that “disability studies seems to make too little room for an acknowledgement of pain and feelings of loss that can follow disabling experiences” (p. 147). while it is difficult for me to not see my father’s hallucinations that the police were coming to arrest him as a medical condition, i also observed as a child what happens when “a body enters a space that was meant for it” (p. 32) when i witnessed my grandmother’s years-long efforts to care for her husband with little support and no accommodations. as i read the book, i came to view the albanian institutional failure to provide any kind of support for both my grandfather and father as they became neurodivergent as a second, more insidious form of political oppression. at the same time, i am also the mother of a four-year old child who, apart from his far-below-average weight and height is not disabled by normative statistics. as i was reading about wilson’s and zoey’s experience at her regular public school classroom where zoey was placed with no support, i kept asking myself how i would react if my son had been one of the children who experienced zoey’s “frequent and violent outbursts” (p. 126) while she was left completely unsupported. these are not easy or comfortable questions, but one of the virtues of this book is the honesty with which wilson tackles the complexities of disability. she gives full voice to those who take different positions, such as christopher reeve, the actor who was paralyzed after a horseback riding accident and faced criticism for using his star power to find a cure for spinal cord injuries instead of “eliminating disabling environment barriers” (p. 33). wilson gives space to reeve’s claim that “i have the right to put my energies where i want them,” and that “[i]n my condition, i would prefer to walk rather than to not walk” (qtd. in wilson, p. 33). she also provides space for disability activists like sue robin, a nonverbal autistic author and writer of the documentary autism is a word, who describes her autism as a “constant struggle” and finds “people who are high functioning and saying society should not look for a cure offensive” (qtd. in wilson, p. 174). wilson acknowledges that “positioning myself within these sometimes extremely contentious discourses is complicated and even risky” (p. 174). but it is a risk well worth taking. although she writes of the “outrage” she feels over “how little our educational institutions, for whatever reason, truly fail to accommodate the needs of diverse learners” (p. 126), i found the tone of the book to be calm throughout, even when describing what must have been very difficult personal experiences. the book both invites and lays groundwork for more autoethnographic research and, as such, it is an important contribution to the conversation we need to have about how to make our world truly inclusive. references wilson, j. d. (2021). becoming disabled: forging a disability view of the world. lexington books. freire, p. (1970). pedagogy of the oppressed (m. bergman ramos, trans.). herder and herder. [qualitative research in medicine & healthcare 2022; 6:11069] [page 67] book review no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2017; 1:6301] [page 1] introduction when i let go of what i am, i become what i might be. lao tzu always go with your passions. never ask yourself if it’s realistic or not. deepak chopra medicine is a tree with many branches, and a career in medicine can be spent microscopically examining the cells of one slender stem; or, climbing from branch to branch. my career has been more of a branch-to-branch affair, and i still haven’t found a truly comfortable perch. perhaps that is because i haven’t settled firmly into my own skin; or, perhaps that is because i haven’t reconciled what i thought medicine would be with what it is; or, perhaps it is because i need to nurture a new branch of this magnificent tree. materials and methods in this piece, in an attempt to understand my past and blaze a meaningful future, i analyze my path to and through family and pharmaceutical medicine, to the crossroads at which i now stand. results and discussion i don’t know how i chose to lean my ladder against the tree of medicine. there were no doctors, nurses, or other medical types in my family; we didn’t even have a veterinarian. what we did have were farmers (lots), a teacher, and a farmer-turned-preacher. yet, i announced – from the age of five – that i was going to be a doctor. what did i think a doctor was? how did i reach those conclusions? observations of my own doctors (with whom i, a healthy child, had very little contact)? skits on sesame street? my early experiences with injuries and blood? farms are certainly not safe or bloodless places. my mom’s cousin lost an arm in a farming accident and wore a prosthesis with a hook (which i found endlessly fascinating and admired as surreptitiously as possible at family gatherings). when i was three, my older brother got his pant-leg caught in the power-take-off of a tractor. as finding myself in medicine erin nissen castelloe private pharmaceutical medicine consultant, san diego, ca, usa abstract in this article (part one of a two-article piece), i, erin nissen castelloe, a woman who has worked almost twenty years as a doctor, first in the practice of family medicine and later as a pharmaceutical medicine consultant, ponder the next phase of my career. in an attempt to understand myself and my experiences in medicine – and to connect with others who may share my belief that medicine (and those who practice it) must evolve in order to empower and serve – i share my personal story: the influences and idealism that led me to medicine; the best career advice i ever received (from a patient, not a doctor); my past and present frustrations with clinical medicine; my struggles to balance my personal and professional aspirations; my growing dissatisfaction with a career in pharmaceutical medicine; and, ultimately, my attempts to collect, sow, and cultivate ideas that may – nurtured with tinctures of time and collaboration – become strong, new branches on the magnificent tree of medicine. correspondence: erin nissen castelloe, private pharmaceutical medicine consultant, 12594 kestrel street, 92129 san diego, ca, usa. tel: +1.858.3546441. email: erin.castelloe@gmail.com; erin@castelloe.org acknowledgements: anthony william fox, md, phd. contributions: erin nissen castelloe wrote and submitted this article. conflict of interest: erin nissen castelloe works as a paid pharmaceutical medicine consultant to several drug-development companies; she does not own or accept stock (or stock options) from any drugdevelopment company for which she works. erin nissen castelloe also works in health education and pro bono patient advocacy. key words: medical careers; individualized medicine; tree of medicine. received for publication: 21 september 2016. revision received: 8 december 2016. accepted for publication: 12 december 2016. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright e.n. castelloe, 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:1-5 doi:10.4081/qrmh.2017.6301 qualitative research in medicine & healthcare 2017; volume 1:1-5 no nco mm er cia l u se on ly he lay on the grass alongside our gravel driveway, waiting for my father to bring the pick-up truck that would haul him to the hospital, he must have been screaming, but i don’t recall any sound. instead, i see crimson blood spreading across the bright-white, cloth diapers held over his wound; seeping under and around my mother’s whiteknuckled fingers. when i was four, my father crushed his big toe with a jack-hammer while breaking up a cement feed-lot. i’m not sure if i actually remember helping him change his bandages, or if i have manufactured memories from his repeated telling of the story; but whenever i think about it, i smell salve, feel rough gauze, and see flashes of his mangled toe – with bruised blackish-purple skin and excoriated-pink flesh peeled away from shiny white bone. did these early experiences lead me to medicine? perhaps. what i do know – without a doubt – is what fueled my climb: praise from teachers, professors, family, and community members, encouraging a little girl to follow her passions, to stretch and reach the next rung of her ladder. twenty-one years ago, accepted into the md/phd program at the university of minnesota medical school, i climbed with vigor and confidence toward a career in gynecologic oncology. i was idealistic and passionate. with the naiveté of inexperience on my side, i vowed that ovarian cancer’s death-dealing days were numbered. i plunged into my studies and my research, dividing my time between lecture halls, the library, and the pharmacology department, where i diligently injected human ovarian cancer cells into t-cell-deficient mice so that i could study the efficacy of novel treatments. my mentor’s laboratory was engineering magic bullets, monoclonal antibodies designed to deliver poisons selectively to ovarian cancer cells, sparing normal tissues. i was on fire with the idea of the work and its potential. but, i love animals; even inbred, hairless, t-cell-deficient rodents were not exempt from my love. and, as i watched the ovarian cancer cells – cells that i had injected – swell once-small, soft, pink bellies to grotesque, translucent balloons decorated with blue veins and shiny, black patches of necrosis, my dread for the lab grew. even when one of the treatments showed great promise, my conscience gnawed at me, and my passion for the work waned. around the same time, several gynecologic oncologists – with personalities as malignant as the diseases they treated – rotated through the lab. i began to question. shouldn’t i enjoy my daily work? shouldn’t i like (at least most of) my colleagues? am i climbing toward the right branch of medicine? ultimately, i left the laboratory, relinquished my position in the md/phd program, and dedicated myself fully to clinical medicine. i was still committed to the tree of medicine; i just didn’t know which branch. so, for the time being, i propped my ladder against its broad, sturdy trunk and explored its branches, one clinical rotation at a time. i approached each new rotation with the same objectives: learn as much as possible and figure out if this is how i want to spend my life. i got my best career advice from a patient i’ll call kay. the nature and number of kay’s conditions meant that she was hospitalized on the internal medicine ward for almost six weeks, and i was assigned to round on her every day. i enjoyed seeing her so much on rounds that i got in the habit of sitting with her every afternoon, before i left the hospital for the day. she seemed to enjoy the company – at least, she didn’t seem to be in a hurry to kick me out – and it was definitely the best part of my day. it was kay who showed me that illness can disrupt or interrupt your life, but it doesn’t have to define you. sometimes, i would find her, reading glasses on the tip of her nose, perusing paperwork for the business she owned. once she could walk without assistance, she would coil her feeding tubes, stuff them into her backpack, and push her iv pole so that she could walk around and around the ward, gaining strength with each lap. just before she was discharged – in a show of faith, i think – she stopped wearing a hospital gown. interestingly, the simple change in her attire made me realize that, albeit unconsciously, i had reduced kay to her role as patient, just as i had reduced myself to the role of medical student. after working so hard to get into the md/phd program, only to realize that it was not the right fit for me, i was giving everything to the one role i had left. i believed that, if i spent more hours at the hospital, read more medical literature, aced every exam, and simply gave medicine my all, the way forward would become clear. in retrospect, i know that kay saw me – with all my insecurities and my doubts about the future – clearly. yet, she did not judge, preach, or lecture. the day she left the hospital, she handed me what is still one of my most treasured possessions: a highly polished yellow stone into which was carved the yin and yang. she explained that the symbol meant balance and encouraged me to find my own. in family medicine, i found my people and – i thought – the balanced approach i sought. i was drawn to family medicine by the teachers: unflappable, can-do folks, who had a respectful demeanor with their patients, me, and their colleagues. plus, i liked the variety of people, ages, and conditions represented in a womb-to-tomb, familyoriented, general practice; and the possibility of working with the same patients for years to come. by nature of the fact that it is a general practice rather than a medical specialty, family medicine is at the bottom of the medical hierarchy. that suited me, too; resonated with my humble beginnings as an iowa farmer-turned-preacher’s daughter who came of age at potlucks and town socials and made spending money walking soybeans or minding children while their parents mowed hay or sorted cattle. when i graduated from my family medicine residency and took my first job, i thought i had it made. i could finally build my own practice, taking time to educate and empower my patients, growing each relationship [page 2] [qualitative research in medicine & healthcare 2017; 1:6301] article no nco mm er cia l u se on ly over time, exploring the values, responses and attitudes of my patients so that we could individually tailor their treatment plans to meet their dynamic needs. my mentors had cautioned me against burnout, diagnosing me as too idealistic, too thorough, and too detail-oriented; saying i spent too much time per patient and too much time documenting. they said i would never survive clinical medicine. i didn’t believe them. what i had envisioned seemed possible for the first few months that i was in practice. i was new, and my schedule was slow to fill. once my schedule was routinely full, the visits from the administrative assistants with red sharpies began: just mark which appointments can be double-booked, they said. i don’t double-book, i replied firmly. double-booking is mandatory. please mark the appointments, they insisted. when i refused again, they glared irritably, turned away, and marked the appointments to double-book for me. once the double-booking started, i was chronically behind, usually by an hour or more. the administrators complained, and my patients complained. i did my best to soothe everyone and stay true to my vision. my patient patients kindly said, you’re worth the wait! the administrators scheduled lunch-time seminars to teach me and the other new physicians how to code properly (read: how to maximize charges to each patient and/or insurance company). i did not receive any guidance or supportive training in how to best communicate with or meet the needs of my patients. i did not hear of or attend a single medical-group-sponsored seminar to address the quality or cost-effectiveness of the care that we provided. more patients, each maximally charged, equaled more revenue for the medical group, and was the only metric by which i was judged. four years later, in the bottom of the grand canyon, leaning against the pontoon of the boat on which i was going down-river, enjoying the spectacular glow of the setting sun against the canyon walls, day-dreaming about the adoption of the first two (of our three) children, i knew i had to leave family medicine. balancing the impossible expectations of my medical group with my new foray into parenthood was unthinkable. i wanted to give my children my best, and i had nothing left to offer anyone at the end of each workday. what kept me going and what seemed to be so gratefully received and appreciated by my patients and their families – spending time talking, scrutinizing medication lists for the culprits responsible for side effects or dangerous drug-drug interactions, performing thorough physical examinations, diligently researching their diagnoses and questions, and after-hours phone calls to discuss the results of my research or diagnostic tests – was not valued by the medical group for which i worked. in fact, at each quarterly meeting, despite the fact that i arrived at the office at 6 a.m. and did not leave until 8 p.m. most days, i was labeled as a low producer, a physician who saw only eighteen patients per day, in contrast to the top producer who saw forty patients per day. i was utterly exhausted and fed up with being belittled because i refused to sacrifice my values for the earnings of the medical group. i did not care that they paid me less than the top producer; that was fine with me. yet, the very public, quarterly shame sessions were not. i’d had enough. though the no-compete clause in my contract ensured that i would not – at least for many years to come – set up a private practice anywhere close to home, giving up clinical medicine seemed like a small price to pay for regaining my strength and peace of mind before i became a mom. for whatever reason, i did not feel wholly content as a stay-at-home mom. i love my children, their energy, and their antics, but i am a better, more engaged, and more patient parent when i have some time for myself – and my professional development – each day. so, a few months after my twin girls came home, i started investigating ways that i could still make medical contributions on a truly part-time basis. one of my former patients suggested clinical research and made some introductions. i was lucky enough to meet and be mentored by one of the few faculty of pharmaceutical medicine (designation granted by the royal college of physicians-london) in the united states: anthony, tony, fox. tony recommended that i volunteer for the human subjects’ protection committee (a.k.a. institutional review board, irb) of my former medical group, tutored me several hours per week for over two years, and immediately brought me onto projects where he could observe and mentor me. i was getting paid to learn and contribute. i was introduced to the national and international regulations related to clinical trials, and the ethical obligations of each irb. i got to read informed consents and protocols and learned the vernacular and operational nuances of clinical trials. later, i was invited to share this knowledge as an adjunct professor at a local university. over the past decade, i have expanded the pharmaceutical medicine practice that tony helped me to launch. from time to time i’ve encountered clients who were more interested in profit margins than patient safety, but i’ve been able to gracefully extricate myself from those situations and find alternative projects on which to focus. i’ve been incredibly lucky to have a job that has allowed me to juggle my professional aspirations and the needs of my young children. yet, lately, i’ve been increasingly dissatisfied. part of my dissatisfaction has arisen from arguments with drug company executives about the fact that we do, indeed, need to include all relevant side effects in the drug label, even if they might scare people and prevent them from taking the drug, and a deeper understanding that exorbitantly-priced drugs – drugs that may never make a significant difference in health or well-being – are being directly marketed to consumers in ways that i consider disingenuous. another part of my dissatisfaction – the part [qualitative research in medicine & healthcare 2017; 1:6301] [page 3] article no nco mm er cia l u se on ly that fuels a deep ache to return to clinical medicine – is absorbed from family members, friends, neighbors, and colleagues who trust me with their stories of overtly disrespectful, arrogant, patronizing, and/or dismissive communications with doctors. i hear about missed or delayed diagnoses, too. the missed or delayed diagnoses frustrate me, but are more understandable; medicine is an imperfect science practiced by imperfect human beings, most of whom are dangerously overworked. the stories that enrage me are those in which doctors dismiss people’s concerns without a complete assessment: the man without insurance who is obviously having a heart attack but is discharged from urgent care, minutes after his arrival, with a non-diagnosis of chest pain and instructions to go immediately to the emergency room if his persistent sweating, nausea, chest pain, left arm/shoulder heaviness, and shortness of breath do not improve; the young woman with new-onset, nocturnal seizures who is diagnosed with a supra-tentorial issue (anxiety and/or personality disorder) without a neurological exam, let alone a sleep study and nocturnal electroencephalogram (eeg). could i make a difference for such patients if i returned to clinical medicine? or, would i make the same mistakes? is it pure arrogance to think i could return to family medicine after ten years in pharmaceutical medicine? sure, i’ve maintained my continuing medical education, board certification, and licensure, but am i simply too long out of practice? would my time out of practice be an advantage or disadvantage? after all, the model of clinical practice in which i was trained – see as many patients as possible, as fast as possible, and charge them (or their insurance) as much as possible – is not a model that i want to emulate. what models might suit my personal and professional strengths? (i’ve found at least two models that intrigue me.1,2) if no ideal model is available, could i design and pioneer a new model? would a newer model allow me the time to get to know my patients, to collaborate with, educate, and empower them? (at least one other person agrees that the 15-minute doctor visit is too short and is willing to assert it publicly.3) how do i find my patients, those for whom i would be the right doctor? is what i want to offer something that patients want and need? is clinical practice where i belong, or can i make more of positive impact elsewhere in medicine? i still feel like i belong in medicine; do i? if so, how can i – finally – find my place? conclusions you can’t connect the dots looking forward; you can only connect them looking backwards. so you have to trust that the dots will somehow connect in your future. you have to trust in something—your gut, destiny, life, karma, whatever. this approach has never let me down, and it has made all the difference in my life. steve jobs bone-deep, i know that each of my career shifts was necessary to achieve a sense of balance within myself, to ensure that i didn’t completely lose myself to medicine. yet, i harbor a deep sense of shame that i have contributed to the shortage of primary care doctors.4 however, recent coverage of physician burnout5,6 reminds me that i am not alone in what i have experienced. the resilience trainings and mind-body interventions7 recommended for burned out physicians are certainly well-intentioned (and potentially effective for coping with the stresses of suboptimal work environments) but do not, in my opinion, address the root cause of my own burnout: a disconnect between my idealistic vision of medicine and the reality of my experiences in medicine. from a distance, i had envisioned the tree of medicine as magnificent, lush, and thriving. only after i was immersed in medical school, residency, and family and pharmaceutical medicine was i able to see that the tree of medicine, though its roots are deep and wide, has many diseased and dying branches and is riddled with pests that bore into its bark and sap its strength. i truly believe that the tree of medicine will survive and thrive again, but that the process will take decades and will require the collaboration of many arborists. the chief arborist on each project should always be the patient, the one for whom this magnificent tree was planted in the first place. collaborating arborists can help to determine which branches should be pruned, which removed, where new branches might be grafted, and how to best handle the pests in order to achieve each chief arborist’s vision. i have spent decades trying to connect the dots looking forward, carefully positioning my ladder along these proverbial dots so that i would ultimately arrive at the branch of medicine that was right for me, only to recognize that the right branch of medicine for me may not exist yet. perhaps the past twenty years (not to mention my family’s generations of farmers) have prepared me to sow, cultivate, nurture, and graft a new branch onto the tree of medicine. maybe, instead of finding my place in medicine, i need to find myself in medicine. so i, the quintessential planner, am trying something new. i am climbing down off my ladder and setting it aside. i am clearing ground in my schedule, fertile patches in which to plant the ideas provided by my intuition, my family, my friends, and my colleagues. i have no idea where i am going in the next phase of my career. yet, new ideas about how i might impart healing and empower patients – therapeutic riding, sex education workshops for parents and teens, writing children’s books about inspiring individuals who defy the challenges of their congenital syndromes, an urban garden in which to explore food as medicine – are sprouting, unfurling their leaves, and reaching for the sky. in my next article (part two of a two-article piece), i will explore and analyze my ideas and questions within the context of recent publications – both lay and academic [page 4] [qualitative research in medicine & healthcare 2017; 1:6301] article no nco mm er cia l u se on ly – in order to extrapolate beyond the boundaries of my own experience and join the national and international conversations related to health and wellness and the implicit challenges involved in striving for both. references 1. wible p. america’s leading voice for ideal medical care. available from: http://www.idealmedicalcare.org/ 2. finkelstein m. slow medicine. bedford, ny: slow medicine foundation; 2015. 3. lee b. time to change the 15-minute limit for doctor visits. available from: http://www.forbes.com/sites/brucelee/ 2016/09/10/time-to-change-the-15-minute-limit-for-doctorvisits/#6fa2800143c0 4. porter s. significant primary care, overall physician shortage predicted by 2025. available from: http://www.aafp.org/ news/practice-professional-issues/20150303aamcwkforce. html 5. cox e. doctor burnout, stress and depression: not an easy fix. available from: http://health.usnews.com/healthnews/patient-advice/articles/2016-04-12/doctor-burnoutstress-and-depression-not-an-easy-fix 6. drummond d. physician burnout rates top 50 percent (and that’s not the worst finding). available from: http://www.huffingtonpost.com/dike-drummond/physician-burnout-rates-top50-percent-and-thats-not-the-worst-finding_b_ 8795006.html 7. nedrow a, steckler n, hardman j. physician resilience and burnout: can you make the switch? available from: http:// www.aafp.org/fpm/2013/0100/p25.html [qualitative research in medicine & healthcare 2017; 1:6301] [page 5] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2017; 1:6618] [page 39] introduction research shows that young people often assume caregiving responsibilities for chronically and terminally ill family members, yet these young caregivers (ages 18 to 40) are an under-researched population.1 though caregiving research has focused primarily on caregivers in midlife, recent data from the national alliance on caregiving [nac] and the aarp public policy institute indicate that 24% of all caregivers are ages 18 to 34, 23% are 35 to 49, and 86% of those informal caregivers are relatives.2 in addition to age, we know that gender is also a deciding factor in terms of who takes on the caregiving in families. although men can and do assume the role of caregiver, research shows that more often, women become caregivers, with approximately 60% of caregivers being female.2 however, due to shifts in social demographics, more men are becoming caregivers.2,3 while age and gender are important in understanding the experience of caring for relatives with chronic and terminal illness, caregivers’ culture is also worthy of attention. recent reports indicate that prevalence of caregiving varies by racial/ethnic group and is highest among hispanics (21%), followed by african americans (20.3%), asian americans (19.7%), and whites (non-hispanic) (16.9%).2 asians are a fast-growing and diverse minority group in the us and this case focuses on the experience of one family from south asia. the 2010 census reported 3.8 million south asians living in the us and more than 80% of these south asians are of indian origin.4,5 a critical, yet often overlooked factor impacting the relationship between the health care provider and the patient, caregiver and family is the family’s culture. we believe that health care providers should embrace a more culturally bound view of caregiving, which offers valuable insights into a fuller spectrum of the caregiving experience. attending to individuals’ cultural background more fully allows health care providers to engage with and support family caregivers who differ in things like their reactions to caregiving, their attitudes towards clinical intervention and outside help, and their ways of coping with stress. we conducted searches in ebscohost using a variety of terms and combinations. south asian indian plus carecultural implications of filial obligation and the asian indian american family caregiver paula k. baldwin,1 natalie d. pope,2 adam d. marks3 1department of communication studies, western oregon university, monmouth, or; 2university of kentucky, lexington, ky; 3department of internal medicine, university of michigan, ann arbor, mi, usa abstract family caregivers in young adulthood from different racial/ethnic groups represent an understudied population. of this group, asian indians are a diverse and fast-growing immigrant population in the us and present unique challenges for health care providers. to illustrate factors influencing a young family caregiver from an under-represented racial/ethnic population, we report on the case of a 33 year-old american from an asian indian background who was a caregiver for his father with normal pressure hydrocephalus (nph). with this case report, we illustrate that medical providers should attend to cultural norms of the family system, including family communication patterns, filial obligation, and decision-making. correspondence: paula k. baldwin, department of communication studies, western oregon university, 345 monmouth avenue north, monmouth, or 97361, usa. tel: +1.503.838.8065. email: baldwinp@wou.edu contributions: pkb, data collection and analysis, writer (60%); ndp, data collection and analysis, writer (30%); adm, editor (10%). conflict of interest: the authors declare no potential conflict of interest. note: this study is not funded and is excerpted from a larger study conducted by authors baldwin and pope. a version of this paper was presented as a poster at the international palliative care network conference, 2016. key words: family caregiver; asian indian; filial obligation; cultural norms. received for publication: 6 february 2017. revision received: 13 march 2017. accepted for publication: 23 march 2017. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright p.k. baldwin et al., 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:39-43 doi:10.4081/qrmh.2017.6618 qualitative research in medicine & healthcare 2017; volume 1:39-43 no nco mm er cia l u se on ly giver yielded no academic journal article results. south asian plus caregiver, and south asian american plus caregiver each yielded one academic journal article. our search using indian american plus caregiver yielded only results focusing on first/native americans. given the paucity of research on young, male, asian indian caregivers, this case report represents a small, but significant step in building literature to inform culturally responsive health care for this population. of note, we collected the data for this case study as part of a larger project exploring the experiences of young adults in family caregiving roles. further details from this larger project are available elsewhere.6 materials and methods ravi (pseudonym) was a 33-year-old asian indian caregiver who, along with his wife, lived with his parents in their home outside a major eastern metropolitan city. ravi’s sister, age 28, resided a significant distance away, in the southeastern u.s. with her husband and children. in september 2015, ravi gave verbal consent to be interviewed once via telephone using an interview guide. (interviewed by ndp; see appendix). we digitally recorded his interview and had it professionally transcribed, resulting in 47 pages of text. at the time of the interview, ravi and his wife, age 32, were about to celebrate one year of marriage. ravi’s parents had been married for nearly 35 years. ravi’s mother had no health concerns, but she was limited in her ability to speak and understand english, and had always been dependent on her husband for functional tasks such as driving. in 2012, at age 58, ravi’s father was diagnosed with early-onset alzheimer’s with an additional diagnosis of parkinson’s disease one year later. ultimately, physicians diagnosed ravi’s father with normal pressure hydrocephalus (nph) and he required 24/7 care. although ravi admitted his dad had always had an aggressive streak, his behavior worsened as the nph progressed. consequences of his violent conduct were severe. ravi’s father was arrested multiple times for behaviors like entering other people’s homes and urinating in public places. ravi and his family were evicted two separate times and at one point, ravi’s father spent six months in a psychiatric facility and there was an open case with adult protective services, which was initially opened after ravi’s dad physically attacked some neighbors and a police officer. when it became apparent that his father needed caregiving that his mother was unable to provide, ravi took fmla for six months. ravi quickly realized that the situation was worse than he expected and that the caregiving required was not temporary. bound by cultural expectations, ravi quit his full-time job about three years ago to care for his father. he has since started a consulting business to help meet the financial obligations of the family. ravi’s mother did not drive and although she spoke some english, she was not able to communicate comfortably with her husband’s hospice and palliative care providers. while ravi reports spending about 80 hours a week providing hands-on help to his father, he minimized the care he provides. he described his 55 year-old mother as the primary caregiver, indicating she spends up to 168 hours per week caring for her husband. he expressed, there are months where she does not even leave the house. at this point in their caregiving journey, ravi appeared more concerned with his mom than his dad. he admitted, her life will be better after he’s gone as she has been isolated from her local community, as well as her family of origin in india. in the past year, ravi’s father’s health continued to decline and at the time of this interview, he was receiving hospice and palliative care services. his father’s weight had dropped to only 88 pounds, he was in a wheelchair full time, and he had lost the ability to speak. from his role as a family caregiver, ravi derived a meaningful part of his social identity and acknowledged many positive aspects of the experience. ravi’s familycentered cultural norms provided a context for his positive perceptions of helping care for his dad. by acting as translator for his mother, caregiver for his father despite their difficult relationship history, and providing financial stability for his parents, ravi found satisfaction in fulfilling his expected role; it was in this way, that he honored his parents and his family. results and discussion several factors in ravi’s situation are worth highlighting. first, his mother experienced linguistic isolation with her limited english proficiency, restricting interaction with her husband’s health care providers and the medical community at large. language proficiency has often been denoted as one indication of acculturation and ravi’s mother’s limited medical literacy and inability to drive prevented her from being the sole caregiver for his dad with a serious medical condition.7 often when only one member of a family speaks english, health care providers tend to focus their communication with that individual and can ignore the needs of other family members. especially in care for chronically and terminally ill patients, efforts should be made to utilize interpreter services and/or cultural brokers so as to fully evaluate for any distress non-english-speaking family members may have. second, in contrast to traditional western gender norms where daughters become caregivers to aging parents, in asian indian cultures, the oldest son is often the one who cares for parents.8 as ravi explained, in our culture, [families] tend to stay together….and it’s not like a daughter has to be a caregiver. i think [sic] our culture, the son really has to step up and do it. in ravi’s case, his younger sister was geographically distant thus preventing her from assisting in her father’s care. caregiving by the eldest son can sometimes be only in name, with daugh[page 40] [qualitative research in medicine & healthcare 2017; 1:6618] article no nco mm er cia l u se on ly ters-in-law being the ones to provide the daily assistance,9 but in ravi’s situation, he had left full time employment and been caring for his father for about 18 months before he met and married his wife. during the time of our interview, however, ravi remained at home with his parents while his wife worked full-time outside of the home. ravi exhibited a strong sense of filial obligation regarding his father’s care, in spite of their relationship history. ravi disclosed his father had a history of alcoholism and he was often aggressive: sure, my dad used to beat people up…when i was little, he would beat me up, too. even so, ravi asserted that he was raised extremely well. he expressed a desire to reciprocate the love and sacrifice his parents gave in raising him. throughout his life, ravi had also observed his mother’s own filial obligation: you see, she’s here taking care of my dad. she [also] took care of his mother, my grandmother on my dad’s side. in contrast to ravi’s strong sense of duty to care for his parents, he explicitly stated that he did not expect his children to maintain the same sense of filial duty. i tell my wife…i say, what we’re doing for our parents today, we don’t even expect a quarter from our kids down the line. health care providers should be aware of cultural norms and validate, as in this case, the role of male family members in the caregiving of patients with chronic and terminal conditions. lastly, ravi’s parents were financially dependent on him and his wife. his mom had never worked outside the home and his dad has been retired for several years. kalavar and willigan suggested that when older immigrants lose their financial assets and material basis for power, they can be treated as dependent guests rather than patriarchs and matriarchs (p. 227),10 but in ravi’s family, his mother retained her status as the head of the family. as this is contrary to what would be found in american culture, ravi’s american friends have a difficult time understanding how it could be that he makes the money, he runs the household, and yet, his parents still make the decisions. ravi navigated the health care system, but still asserted that his mother was the boss and the final decision-maker. for south asian families, where the culture depends heavily on filial obligation, as the son, ravi may participate in health care discussions and subsequent decisions, but in the end, the ultimate outcome of the discussion is based on his mother’s opinion. again, health care providers need to have a keen awareness of this cultural dynamic, which can affect not only medical decision-making but also decisions about finances, funeral plans, and grief management. conclusions among all ethnic minority populations, satisfaction with health care in the us is lowest among asians.11-14 one study of employer-based health insurance (160,694 participants: 83% white, 8% black, 6% hispanic, 3% asian) sought to measure satisfaction with health care by soliciting answers in these domains: receiving needed care; receiving care quickly; doctor communication; helpfulness of office staff; and customer service.11 blacks, hispanics and asians reported lack of satisfaction with different aspects of their health care. asians had significantly worse experiences, rated their care and their doctors lower, and reported more issues with access to healthcare compared to white participants.11 from the doctors’ perspective, barriers to having effective end of life conversations with diverse populations include cultural differences in truth-telling and decision-making, and while the reasons for this are varied, one important component is the impact of culture on health and caregiving. maintenance of the patriarchal or in this case, matriarchal, organization of this family, along with the cultural expectations of filial obligation during caregiving, offers an important communication insight for health care professionals and the medical community. cultures offer different perspectives in areas such as communication, gender roles, organization of care, and decision-making.15 when interacting with health care providers, lack of awareness of and attention to these cultural differences can create additional stress for already highly strained caregiver.15 resources that exist to help health care professionals build cultural awareness, especially self-awareness, include exploring one’s community map,16,17 the iceberg analogy,16 and cox pie charts.18 in ravi’s case, although ravi claimed his mother took the lion’s share of caregiving for his father, it could also be speculated that in order to maintain his mother’s position as the matriarch of the family, ravi downplayed his contributions. while medical providers may communicate most comfortably with a family member such as ravi, the most fluent english speaker, research has shown that this type of communication can be problematic.19 professionals could benefit from cultivating an awareness of and acknowledgement of cultural norms in the organizational structure of the south asian family. in end of life care, periyakoil and colleagues found that limited knowledge of patients’ cultures resulted in doctors’ (i) inability to empathize with the ethnic patients’ cultural values that influence [end of life] decisions, and (ii) committing cultural faux pas by discussing taboo topics which inadvertently offended the patient/ family and undermined the therapeutic relationships (p. 9).20 a general knowledge of patients’ culture is not enough however, health care providers should inquire of individual caregivers concerning their decision-making processes and preferences and try to accommodate these preferences. through this type of partnership building, caregiver burden can be reduced and/or improved.21 in ravi’s case, although he was the most accessible family member due to his english fluency, he was not the primary decision-maker. as his father’s behavior spiraled out of control, not being the decision-maker created additional stress for ravi and it would have been advantageous to have this type of part [qualitative research in medicine & healthcare 2017; 1:6618] [page 41] article no nco mm er cia l u se on ly nership support available to him through his health care providers.21 in the american medical model, the primary supposition is that the individual is responsible for the management of his or her own health care decisions.22 however, to work effectively with families of individuals with chronic or terminal illness, particularly those whose culture differs your own, we maintain that health care providers should consider three strategies. one, health care professionals must strive to build an effective rapport in order to join the family system by familiarizing themselves with and then accommodate themselves to the social rules of the culture.23 second, care providers must seek to understand the family hierarchy structure and determine who is (are) the decisionmaker(s) in order to jointly share the decision-making process between physicians and other health care providers and the patient and family.24 ravi described his mother as the mouthpiece of the family and although he helped make decisions on behalf of his father, he denied having the authority to make the final call. he said, when we deploy a message to somebody, if there’s a last call, or if there’s a decision, i don’t think i have the authority to say it. my mother will say it. while matriarchal family structure will not be the case for all south asian patients, providers must attempt to provide individualized care to accommodate unique preferences and needs. after gaining the family’s trust and identifying the decision-makers, the final step involves making sure that medical providers ask the appropriate questions to obtain the desired response to facilitate the best care options,25 as all the decision-making will be informed by the family’s cultural beliefs.26 mnemonic tools such as ethnic(s) (explanation, treatment, healers, negotiate, intervention, collaborate, spirituality) can help medical providers understand how the patient’s culture might affect their desires for treatment preferences at the end life,27 and can help health care providers more intentionally attend to issues of culture throughout the treatment process to help foster trust with the patient and his or her family. communicating cross-culturally can be challenging, but not impossible. at its essence, intercultural communication is based on understanding the values, or what is good, desirable, or beautiful, in a culture as well as the norms or rules and expectations that instruct people’s behavior within a culture.28 this lack of attention to culture in health care interactions has been documented extensively in journal articles such as ours and books such as the spirit catches you and you fall down (tscyayfd) published in 1997.29 it says something about our attention to this problem that twenty years later, academic scholars are still writing and publishing about the importance of intercultural training for health care providers. in tscyayfd, lia, a young hmong child, was the center of a perfect storm of the hmong culture, the medical staff that treated lia, and the american medical culture. once lia was diagnosed with epilepsy, she became the center of an expressed struggle between her parents who preferred a combination of folk remedies and western medicine and her physicians whose preferred treatment was a large assortment of pharmacology.29 these profound cultural differences and miscommunication exacerbated the dissension between lia’s parents and her physicians, resulting in lia losing all her higher brain functions at age four.29,30 at the time this book was published, it received lots of attention from the medical community,30 but have they really taken the lessons learned to heart or better yet, to the medical classroom? if health care providers were trained to interact with different cultures appropriately, ravi, his mother, and his father’s experiences might have been very different. we recommend that physicians and other medical providers should strive to employ appropriate interpersonal communication skills, undertake formal training in intercultural communication and/or employ interpreters or cultural brokers, and focus on appropriate clinical questions to elicit the most accurate responses from the patient and family. use of the strategies mentioned furthers the creation of a solid foundation based on mutual trust and respect between the health care provider, patient, and family caregiver, thereby laying the groundwork for a more meaningful relationship.31 implementing these strategies should serve to strengthen the interaction between the health care system and caregivers, such as ravi, and ultimately, serve the needs of the patient more effectively. references 1. levine c, hunt gg, halper d, et al. young adult caregivers: a first look at an understudied population. am j public health 2005;95:2071-75. 2. national alliance for caregiving and aarp public policy institute. caregiving in the u.s. washington, dc: national alliance for caregiving and aarp; 2015. available from: http://www.caregiving.org/caregiving2015/ 3. robinson ca, bottorff jl, pesut b, et al. the male face of caregiving: a scoping review of men caring for a person with dementia. am j mens health, 2014;8:409-26. 4. south asian american leading together. a demographic snapshot of south asians in the united states; 2012. available from: http://saalt.org/wp-content/uploads/2012/09/demographic-snapshot-asian-american-foundation-2012.pdf 5. united states census bureau. the asian population: 2010; 2012. available from: http://www.census.gov/prod/cen2010/ briefs/c2010br-11.pdf 6. pope nd, baldwin p. life interrupted: young adults as family caregivers. gerontol 2015;55:740. 7. diwan s, jonnalagadda ss, balaswamy s. resources predicting positive and negative affect during the experience of stress: a study of older asian indian immigrants in the united states. gerontol 2014;44:605-14. 8. sharma rk, khosla n, tulsky ja, carrese ja. traditional expectations versus us realities: firstand second-generation asian indian perspectives on end-of-life care. j gen intern med 2011;27:311-7. 9. lee m, yoon e, kropf n. factors affecting burden of south [page 42] [qualitative research in medicine & healthcare 2017; 1:6618] article no nco mm er cia l u se on ly koreans providing care to disabled older family members. inter j aging soc develop 2007;64:245-62. 10. kalavar jm, willigan jv. older asian indians resettled in america: narratives about households, culture and generation. j cross cult gerontol 2005;20:213-30. 11. lurie n, zhan c, sangl j, et al. variation in racial and ethnic differences in consumer assessments of health care. amer j man care 2003;9:502-9. 12. murray-garcia jl, selby jv, schmittdiel j, et al. racial and ethnic differences in a patient survey: patients’ values, ratings, and reports regarding physician primary care performance in a large health maintenance organization. med care 2000;38:300-10. 13. siu al. variation and quality of self-report health data: asian and pacific islanders compared with other ethnic groups. med care 1995;33:1120-31. 14. taira d, safran d, seto t, et al. asian american patient ratings of physician primary care performance. j gen intern med 1997;12:237-42. 15. van keer r, deschepper r, huyghens l, et al. dealing with cultural diversity during the process of communication and decision-making in the icu: a literature review. crit care 2014;18(s1):24. 16. health resources and services administration. transforming the face of health professions through cultural and linguistic competence education: the role of the hrsa centers of excellence; 2002. available from: http://www. hrsa.gov/culturalcompetence/cultcompedu.pdf 17. pinderhughes e. understanding race, ethnicity, and power: the key to efficacy in clinical practice. new york: free press; 1989. 18. cox t. cultural diversity in organization: theory, research, and practice. san francisco, ca: berrett-koehler publishers, inc.; 1994. 19. eli k. social networks, social support and coping with serious illness: the family connection. soc sci med 1996;42:173-83. 20. periyakoil vs, neri e, kraemer h. no easy talk: a mixed methods study of doctor reported barriers to conducting effective end-of-life conversations with diverse patients. plos one 2015;10:e0122321. 21. brodaty h, donkin m. family caregivers of people with dementia. dialogues clin neurosci 2009;11:217-28. 22. villaruel am, portillo cj, kane p. communicating with limited english proficiency persons: implications for nursing practice. nurs outlook 1999;47:262-70. 23. dysart-gale, d. clinicians and medical interpreters: negotiating culturally appropriate care for patients with limited english ability. fam comm hlth 2007;30:237-46. 24. gravel k, légaré f, graham id. barriers and facilitators to implementing shared decision-making in clinical practice: a systematic review of health professionals’ perceptions. implement sci, 2006;1:16. 25. carteret m. eliciting quality patient response in cross-cultural care. cross-cultural communications for health care professional; 2011. available from: http://www.dimensionsofculture.com/2011/03/eliciting-quality-patient-responsesin-cross-cultural-care/ 26. wright aa, stieglitz h, kupersztoch ym, et al. united states acculturation and cancer patients’ end-of-life care. plos one 2013;8:e58663. 27. levin s, like r, gottlieb j. ethnic: a framework for culturally competent clinical practice; 2000. new brunswick, nj: department of family medicine, umdnk-robert wood johnson medical school. 28. floyd k. culture and gender. in interpersonal communication (pp. 36-43); 2011. new york: mcgraw-hill education. 29. fadiman, anne. spirit catches you and you fall down. 1997. new york: farrar, straus and giroux. 30. fox, m. lia lee dies; life went on around her, redefining care. the new york times. 2012. available from: http://www.nytimes.com/2012/09/15/us/life-went-onaround-her-redefining-care-by-bridging-a-divide.html 31. doehring c. intercultural care: trust and theological accountability. in the practice of pastoral care, revised and expanded edition (pp. 1-36); 2014. westminster john knox press. [qualitative research in medicine & healthcare 2017; 1:6618] [page 43] article no nco mm er cia l u se on ly layout 1 introduction internationally, the biomedical health model has been the primary methodology for health care treatment.1 within the last ten years, however, complementary/alternative medicine (cam), a group of diverse medical and healthcare systems, practices, and products that are not presently considered part of conventional medicine, has been gaining momentum among patients and health care practitioners.2 cam refers to a wide range of ethnocultural therapeutic practices such as aromatherapy, herbalism, and reiki.1 the introduction of cam modalities in biomedical treatment has been gradual,3 in part because of the perception among biomedical providers that unconventional treatments represents a rejection of and challenge to the biomedical approach, their lack of general knowledge about cam, and unproven scientific evidence of their efficacy.4,5 research on communication and cam suggests that patients are hesitant to talk with their providers about cam because they fear providers will stop the conversation.6 patients’ perception of provider rejection or indifference to cam can strain patient-provider communication.7 to address their needs, some patients go directly to cam providers. cam specialists practice the field of integrative medicine, which reaffirms the importance of the relationship between practitioners and patients.7 previous research suggests that increased provider education of cam use and proper integration of cam and biomedical practices can improve patient-provider communication about cam.8 incorporating cam therapies into the conventional health system could possibly contribute to a wide cultural shift in contemporary healthcare.9 one demographic group who generally supports this health culture shift is college students. as early adopters, college students are a unique population who are open to and likely to use cam.10 many students who actively use cam view it as a treatment for illnesses, as well as a promotion of health and vitality.11 college students already report using cam therapies such as multivitamins, yoga, massage therapy, mediation, and spiritual healing as resources to improve college students’ communication about complementary and alternative medicine practices heather j. carmack,1 julie a. serafin2 1department of communication studies, university of alabama, tuscaloosa, al; 2pra health sciences, raleigh, nc, usa abstract while the use of complementary/alternative medicine (cam) has increased over the last two decades, how patients communicate about their decisions to use cam has yet to be fully explored. the purpose of this study is to examine college students’ decision-making and communication about cam. fourteen college students participated in semi-structured focus group interviews about their cam use and communication about cam with family, friends, and health care providers. participants use cam to improve their physical and mental health. however, they have difficulties justifying their decision to practice cam to others. they relied on cam not only for physical and mental stability, but also as a sounding board for larger spiritual issues. participants use passive communication strategies to communicate about their cam use and often do not disclose cam use to their providers because of the stigmas related to cam. there is potential danger for cam users who do not disclose cam use to providers, family, and friends. more efforts are needed to encourage open and honest communication about cam use. correspondence: heather j. carmack, department of communication studies, university of alabama, po box 87072, tuscaloosa, al 35487, usa. tel.: 740.438.0469. e-mail: heather.carmack1@gmail.com key words: college students; communication; complementary and alternative medicine; patient perspective. contributions: hc, data collection and analysis, manuscript writeup, manuscript editing; js, research assistant, data collection and analysis, literature review, draft write-up. conflict of interest: the authors declare no potential conflict of interest. funding: none. received for publication: 25 october 2017. revision received: 21 march 2018. accepted for publication: 9 april 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright h.j. carmack and j.a. serafin, 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:14-19 doi:10.4081/qrmh.2018.7161 [page 14] [qualitative research in medicine & healthcare 2018; 2:7161] qualitative research in medicine & healthcare 2018; volume 2:14-19 no nco mm er cia l u se on ly their health.12 college can also be very stressful due to workload as well as balancing social, educational and health demands. unfortunately due to these high levels of stress, college students are at a higher risk for feelings of anxiety and depression than the general population.13 anxiety, fatigue, insomnia, and chronic pain have been motivating factors of cam use among college students13 and are used to treat depression and anxiety.14 this can create a pathway for student cam users to explore alternative health options to address their spiritual, physical, and mental needs. these studies identified what cam therapies students are using, but they do not talk about the challenges students experience when communicating about their cam choices with others, including family, friends, and providers. this study examines college students’ communication about their cam use decisions. literature review since the late 1990s, integrating complementary and alternative medicine with traditional western medicine has been a struggle.15 as the dominant approach to health care, the biomedical model traditionally tends to treat patients’ physical illnesses without considering other components of human health, namely mental, spiritual, and emotional. many patients are now focusing on treating these areas along with their physical ailments, turning to cam therapies to complement traditional ones. these alternative practices have been used to promote physical, mental, and spiritual health.16 although health care providers realize they are not scientifically proven, many professionals who work with complementary medicine promote cam for additional health benefits.16 cam therapies look to treat patients as integrated whole beings rather than focusing on treating one part of the body.7 the national center for complementary and alternative medicine classifies cam therapies into four sectors: natural products and supplements, mind-body interventions, manipulations and body-based methods, and energy therapies.7 the first classification of cam therapies is centered on supplements and natural remedies such as herbal medicines, vitamins, and minerals. natural remedies and supplements have also been recognized as dietary supplements that are consumed to boost the immune system, add energy, and aid in the balance of an individual’s diet.7 mind-body interventions include practices such as meditations, yoga, acupuncture, prayer, breathing exercises, and hypnotherapy.7 this cam category focuses specifically on mental and spiritual health that typically is overlooked in the dominant biomedical health approach. mind-body practices are also common techniques to reduce stress, anxiety, chronic pain, and mood disorders.17 manipulation and body-based methods, such as massage therapy and chiropractic manipulation, focus on physical aspects of health just like the biomedical model; however, they are considered additive techniques that help with a patient’s realignment of the body.17 the fourth of the cam treatments, energy therapies, includes magnet therapy, reiki, and healing touch.7 energy therapies are generally utilized by patients to reduce anxiety, reduce fatigue, and improve their quality of life.16 although these cam techniques are all considered body-based therapies, they serve and treat multiple forms of physical and mental health issues.7 communication and complementary/alternative medicine college students’ use of cam therapies such as aromatherapy (use of essential oils), meditation, and acupuncture to treat depression, anxiety, insomnia, and chronic pain are well documented.13-14 however, the use of cam and holistic medicine continues to be recognized only as a secondary form of medical treatment.18 the lack of awareness of complementary and alternative medicine in the dominant health care field is due to many health care providers’ deficient knowledge on this subject.19 admittedly, biomedical practitioners often state they have limited knowledge about cam therapies.6 consequently, this can create ambiguity for patients who want to discuss cam options with their health care providers. another major concern causing health care providers to dismiss the credibility of cam is the lack of scientific evidence proving this type of therapy can significantly treat illness.7 one of the main reasons allopathic health care providers steer away from this topic is because there is a lack of scientific research about cam health benefits and efficacy.6 providers may not offer these alternative treatments to their patients due to the unknown health risks. many health care providers and clinicians believe cam therapies represent a rejection and challenge to mainstream medication and treatment.18 for those providers who do have a general knowledge of cam therapies, studies have shown they are inconsistent in discussing the benefits with their patients.6 regardless, there are additional factors that prevent the awareness of cam into the mainstream health care community. many patients state they are not only wary to discuss cam therapies with their biomedical providers, but time limits during appointments prevent the discussion regarding cam usage.7 patients have indicated they fear disapproval from their biomedical providers if they reference cam therapies as a form of treating illness and disease.20 another factor that contributes to the lack of information regarding cam therapies is the type of communication medium in which the information is disseminated. many patients learn about cam therapies through conversations with friends and family or through their own personal research.21 patients often turn to the internet or lay publications to read about the benefits of cam.21-22 these sources, especially lay publications and pamphlets, discuss holistic and allopathic medicine and how they can successfully be integrated.22 one of the concerns with these search methods is the absence of credibility about [qualitative research in medicine & healthcare 2018; 2:7161] [page 15] article no nco mm er cia l u se on ly cam information found on the internet. word of mouth with family and friends can also be biased due to their lack of scientific knowledge of cam.7 to bridge the gap of communication regarding cam use in the traditional health care system, some patients go directly to cam providers who practice integrative medicine, which focuses on a wide range of health including mental, physical and spiritual well-being.7 the increase of face-to-face communication with cam providers establishes and reinforces credibility of cam and the providers as knowledgeable providers who can express positive attitudes of its health benefits.7 because of this, patients are more likely to support cam’s professional and therapeutic legitimacy.1 patients may also find a cam advocate from other allopathic providers. for example, nurses often serve as the intermediate communicator between conventional provider and patients.1 this may be because nurses tend to be more patient-centered as opposed to biomedical doctors, who are disease-centered.1 multiple ways cam practitioners are increasing mindfulness include improving health care awareness by investment in relationship-centered care, understanding holism, and promoting self-reflection, and self-care.8 these communication solutions will help to create mutual understanding and patient-provider dialogue regarding cam usage, increase individuals’ comprehension of cam therapies, and promote individuals to take action in prevention of illness by incorporating these therapies into their pre-existing health practices. based on the literature, we asked the following research questions: rq1: what are college students’ primary reasons for using cam therapies? rq2: how do students communicate their cam practices to others? rq3: how do students make sense of others’ responses to their use of cam? methods fourteen students from a large mid-atlantic university participated in focus group interviews: 11 females (78.6%) and three males (21.4%). ages ranged from 18 to 22 years (m=20). data collection began once the authors received university irb approval. students were primarily recruited through a research participant pool and word of mouth about the study. two participants identified as freshman, one as a sophomore, nine as juniors, and two as seniors. participants reported using a variety of cam therapies, including yoga, meditation, acupuncture, natural oils, and aromatherapy. nine participants reported using cam therapies daily, three used it weekly, and two used it monthly. the researchers conducted three focus groups (m=4). the researchers used a semi-structured interview protocol with questions pertaining to why college students use cam, perceived health benefits of cam, students’ communication about cam with others, and others’ responses to students’ cam use. the semi-structured protocol allowed the researchers to direct the conversation while leaving space for the participants to add topics that were not covered in the interview protocol.23 the focus groups lasted between 45 minutes and one hour and were transcribed. data were analyzed using an emergent thematic method of data analysis.23 first, the researchers individually read over the focus group transcripts several times to gain a complete understanding of participants’ comments. second, the researchers open-coded the data, identifying repeated patterns and categories that emerged. third, the researchers then integrated the categories into common themes. after identifying common themes, the researchers highlighted repeated comments representing the themes. quotations from participants, identified with pseudonyms, are used to illustrate these themes. students’ communication about complementary/alternative medicine justification of decision making process participants primarily identified two reasons for starting and continuing to use cam therapies: physical and mental health. many participants turned to cam therapies as a way to help alleviate pain resulting from physical ailments or illnesses. in one focus group, anna discussed how she was diagnosed with mononucleosis. she was prevented from engaging in strenuous exercise but still wanted to be active so she began yoga practice. she explained, at first, i hated them [yoga classes]. they were not fun. my hands hurt. my arms hurt. i didn’t get the breathing…but i had to keep moving my body, so i kept coming back for some reason. and then i started to fall in love with it. after recovery, anna continued her yoga practice; it became such an integral part of her daily life that she completed training to be a yoga fitness instructor and started teaching yoga at the university recreation center. kara, a student athlete, described how cam therapies such as acupuncture and chiropractic treatments gave her more energy in her sports performance. i physically felt so much better. i was able to run with less effort. participants who actively practiced yoga (one of the most commonly practiced therapies among participants) benefitted by acquiring more strength, leaner muscles, and increased flexibility. participants revealed although they generally started using cam as a secondary source of treating health, for many it evolved into a primary source of maintaining health. most participants began using cam therapies as a way to aid with their mental health, seeing cam connecting more to their mental and spiritual well-being than their physical well-being. sam discussed how his interest in mindfulness led him to begin meditation and yoga practices: meditation helps me understand why things are happening. additionally, sam stated that using cam therapies has pushed him in a positive direction, and has fa[page 16] [qualitative research in medicine & healthcare 2018; 2:7161] article no nco mm er cia l u se on ly cilitated his ability to overcome frustration. balance and control were two reoccurring facets of cam during the focus group. cassie uses aromatherapy and targeted breathing techniques to help address her anxiety: i just prefer it in a way…i have a lot of anxiety issues. so like, especially breathing, it helps me calm down, come down. and i just don’t like taking medicine if i don’t have to. many participants believed their cam therapies have given them empowerment, strength, control, and a happier, balanced life. internal questioning although participants identified as cam users and a majority use cam daily, many participants stated they initially struggled with and had concerns about cam therapies. one of the major reasons for this struggle was because participants were not sure how and if cam conflicted with their religious beliefs and practices. sam explained how he struggled with meditation initially because it did not correlate with his religious views. there is a lack of openness due to religious views; i saw it as going against my religion. sam discussed how he now transforms his religious views with meditation practices as a source of devotion to universal love. likewise, abby connects her cam practice to religion by framing mediation as prayer, stating, just to know that someone higher than medicine can cure you. many participants also discussed how they became discouraged about cam therapies when they did not see immediate results. grace explained how she first became discouraged to practice cam therapies because she was not receiving instant results. she continued her statement by explaining that she had to continuously practice yoga, in order to balance her mental and physical health. in the end, many participants rationalized their decision to continue to use cam because of the lack of instant success. as cassie stated, you aren’t going to get worse from doing alternative medicine. and it may take a while, but maybe that’s healthy. communication barriers although the study’s participants are active cam users, they do not actively communicate about cam or their specific cam practices. kevin specified that he only talks openly about his cam use with one friend, who also actively participates in these therapies. for some participants, this was related to the stigma associated with cam practices. anna explained that many of her friends stereotype her due to her cam practices. they call me a hippie; even though people are starting to accept cam, they are not open to trying it themselves. for anna, this is especially difficult because she is a trained fitness instructor and teaches yoga. although there still remains a stereotype about cam users, participants generally believed that the stigma is not as great as with other novel practices, but is not widely accepted. as nadine stated, some practices like yoga, everyone is okay with. but talk to someone about acupuncture, no. i think they will roll their eyes. to counter the stigma about cam, participants identified specific communication strategies when talking about cam. most participants strongly emphasized that they do not initiate conversations or bring up cam during conversations. madison stated, unless someone wants to know more about my cam use, i don’t openly advertise it. participants like andrew find ways to talk about cam without discussing some of the alternative or spiritual beliefs connected to those practices. he explained how he does not go into too much detail about his cam use because he doesn’t want to alienate himself from people. he added, if you do discuss cam, keep it simple and grounded; people understand things conceptually and abstract principles are not visible. participants also struggled to communicate with their health care providers about cam, especially since they see it as an equal part of their daily health practice. nadine stated, i won’t say anything, not unless they [providers] asked. laura stated that her providers do not talk about cam therapies, perhaps due to their medical training. many participants agreed they do not actively discuss their therapies with their providers. participants stated they never thought to raise the topic during the conversation. kevin believes doctors as unwilling to communicate with their patients about cam therapies because they tend to focus on western medicine that you can test scientifically. laura also discussed how time constraints limit medical providers from discussing cam therapies: instead of taking a holistic approach to heal, many providers just prescribe medicine. discussion this study used focus group interview data from college students who actively use cam. students reported having positive experiences and benefits with their cam therapies, including having control and balance with their health. this study’s finding supports previous research which suggest people use cam to address physical ailments and mental health11,24 and are more likely to have a positive attitude, more self-direction, and more self-control.10 participants also indicated that they do not actively communicate with their providers, family, and friends about their cam usage. participants believed their providers do not participate in cam discussion due to the lack of scientific evidence and integration into the biomedical health care field.25 student participants’ decision-making about cam use was insightful. for many of the participants, cam use was unexpected and also met with skepticism, in part because cam was simply a short-term alternative: yoga because a student had mono, using acupuncture to ease pain after surgery. all but one participant came to practice cam therapies because they genuinely wanted to know [qualitative research in medicine & healthcare 2018; 2:7161] [page 17] article no nco mm er cia l u se on ly about the practice. the use of cam, for the most part, was completely patient-led,26 where they arrived to the practice of cam with little to no previous knowledge about cam. instead, they learned about cam as they practiced. additionally, the students’ enjoyment with cam therapies helped to transform it from a short-term alternative to a long-term practice. much of the research on cam, including those cited in this study, frame cam as a temporary health practice during the treatment of another health issue. these findings suggest patients quickly move past seeing cam as temporary treatment and are able to integrate into their everyday health practices. that being said, this integration is not always seamless. several participants struggled to reconcile their cam practices with their religious beliefs. because many cam therapies are grounded in enthocultural health practices,27 participants were not sure how the tenets of their practice matched with their particular religion. part of this confusion comes from the fact that many individuals who use cam therapies do not consider how or why cam practice is supposed to work.28 to do so, would ask individuals to call into question beliefs about greater powers or higher beings.28 the findings from this study underscore how participants, even those who have been practicing cam for longer periods of time, still question how cam matches with their religious beliefs. participants in this study appear to reconcile any differences on the tension between religious and spiritual28 or framing these acts, such as mediation, as similar to their religious practices. participants see cam truly as complementary to their religious practices. the findings from this study raise some interesting implications for patient communication about cam practices. although cam use is becoming more popular, participants identified a number of stigmas and stereotypes still associated with cam use, even more mainstream practices like yoga. the fear of being labelled as weird, a hippie, or one of those people prevents these students from openly talking about cam practices and using their experiences to educate others. the passive communication strategies employed by participants to counter these stigmas, although helpful, rely on others to be interested, open, and nonjudgmental. participants were unable to identify successful active communication strategies to dispel negative opinions about cam. the difficulty or even lack of communication about cam because of stigmas associated with different cam therapies could have lasting negative impacts on communication and outcomes. for example, how will family members or friends answer questions about a student’s health practices in an emergent care situation? the stigma friends and family associate with cam could prevent them being able to speak correctly about a student’s health practices or be a health advocate for a student. participants also indicated that they do not actively communicate with their providers, family, and friends about their cam usage. participants believed their providers do not participate in cam discussion due to the lack of scientific evidence and integration into the biomedical health care field.25 the lack of communication about cam with providers is also a concern because it suggests that these patients are not being honest and open with their providers about their everyday health practices. this is especially concerning because patients could be omitting important information about how they maintain their health. one participant, megan, who uses a number of herbal supplements, even stated that she only lists multivitamins on her office intake forms because she does not want to be judged by her provider. this can be problematic as there are specific herbal supplements which cause drug interactions.29 cam users also need to be able to talk to their providers if they are concerned about certain treatment plans, such as mediation. research suggests that patients who do not agree with treatment plans are less likely to be compliant.30 nonadherence, coupled with patients not feeling they can be honest about their everyday cam use, could create tension and even adverse events for patients. conclusions the primary limitation of this study was sample size. it was very difficult to recruit students who consider themselves cam users or who see the use of certain therapies like yoga as cam. the sample was also homogenous; all participants attended the same public university and consisted primarily of caucasian women. it is possible that male college students, students of color, and students from private or religiously affiliated universities use, think, and talk about cam differently. future cam research should also specifically observe students’ cam use for mental and spiritual health. perhaps these therapies can aid in anxiety and stress reduction in young adults. the findings also underscore how communication about cam is still a struggle for users, especially with providers. more research is needed about how to improve communication between patients and providers about cam practices. additionally, researchers need to examine how students talk to family members about their cam practices, especially in cases when their parents or other family members are not knowledgeable about or interested in cam. a 2018 survey found that while 10% of us adults have visited a cam practitioner, 70% of those same adults believe in the positive effects of cam practices and 78% of adults aged 18-29 believe cam practice is positive.31-32 those are promising numbers for cam practitioners, patients, and advocates; however, communication and structural barriers still exist which negatively impact patients’ ability to practice cam. lack of access to cam providers and lack of health insurance coverage of cam modalities still inhibit patients in need of care. this can be especially troubling for patients who turn to cam when allopathic medicine does not offer relief for health issues like chronic pain and fibromyalgia. as cam therapies become more [page 18] [qualitative research in medicine & healthcare 2018; 2:7161] article no nco mm er cia l u se on ly commonplace in everyday health, positive communication strategies will become even more important so patients, providers, friends, and family can have productive conversations about cam. these successful conversations will help break down stigmas and help individuals embrace the healing powers of complementary and alternative health practices. improving communication about cam is a small, but needed step, in order for cam practices to be accepted by western medical systems and covered by us health insurance companies as equal to allopathic medicine. references 1. tovey b, broom a. oncologists’ and specialist cancer nurses’ approaches to complementary and alternative medicine and their impact on patient action. soc sci med 2007;64:2550-64. 2. national center for complementary and integrative health. complementary, alternative, or integrative health: what’s in a name? available from: https://nccih.nih.gov/health/integrative-health. accessed: june 2016. 3. kelner m, wellman b, boon h, welch s. responses of established healthcare to the professionalization of complementary and alternative medicine in ontario. soc sci med 2004;59:915-30. 4. gundling ke. when did i become an ‘allopath’? arch intern med 1998;158:2185-6. 5. zhang y, peck k, spalding m, et al. discrepancy between patients’ use of and health providers’ familiarity with cam. patient educ couns 2012;89:399-404. 6. ho e, d’agostino t, yadegar v, et al. teaching patients how to talk with biomedical providers about their complementary and alternative medicine use. patient educ couns 2012;39: 405-10. 7. deng g, frenkel m, cohen l, et al. evidence-based clinical practice guidelines for integrative oncology: complementary therapies and botanicals. j soc integr oncol 2009;7:85-120. 8. rakel d, guerrera m, bayles b, desai g, ferrara e. cam education: promoting a salutogenic focus in health care. j altern complement med 2008;14:87-93. 9. lees j, tovey p. counseling and psychotherapy, complementary and alternative medicine and the future of healthcare. br j guid counc 2012;40:67-81. 10. chng c, neill k, fogle p. predictors of college students’ use of complementary and alternative medicine. am j health educ 2003;34:267-71. 11. bishop fl, yardley l, lewith gt. a systematic review of beliefs involved in the use of complementary and alternative medicine. j health psychol. 2007;12:851-67. 12. lacaille r, kuvaas n. coping styles and self-regulation predict complementary and alternative medicine and herbal supplement use among college students. psychol health med 2001;16:323-32. 13. kessler rc, davis rb, foster df, et al. long-term trends in the use of complementary and alternative medical therapies in the united states. ann intern med 2001;135:262-8. 14. van der walt g, laughharne j, janca a. complementary and alternative medicine in the treatment of anxiety and depression. curr opin psychiatry 2008;21:37-42. 15. johnson p, ward a, knutson l, sendelbach s. personal use of complementary and alternative medicine (cam) by us health care workers. health serv res 2012;47:211-27. 16. richardson ma, sanders t, palmer l, et al. complementary/alternative medicine use in a comprehensive cancer care center and the implications for oncology. j clin oncol 2000;18:2505-14. 17. dogu g, kargi a, tanriverdi o, et al. complementary/alternative medicine experience in cancer patients: a questionnaire-based survey. int j hematol oncol 2014;24:45-53. 18. druss b, rosenbeck r. associations between use of unconventional therapies and conventional medical services. jama 1999;283:651-6. available from: http://jama.jama network.com. 19. zhang y, peck k, spalding m, et al. discrepancy between patients’ use of and health providers’ familiarity with cam. pat educ couns 2012;89:399-404. 20. soklardis s, kelner m, love r, cassidy d. integrative health care in a hospital setting: communication patterns between cam and biomedical practitioners. j interprof care 2009;23:655-67. 21. humpel n, jones sc. gaining insight into the what, why and where of complementary and alternative medicine use by cancer patients and survivors. eur j cancer care 2006; 15:362-8. 22. ho ey. ‘have you seen your aura lately?’: examining boundary-work in holistic health pamphlets. qual health res 2007;17:26-37. 23. tracy sj. qualitative research methods: collecting evidence, crafting analysis, communicating impact. malden, ma: wiley-blackwell; 2013. 24. johnson s, blanchard a. alternative medicine and herbal use among university students. j am coll health 2006;55: 163-8. 25. shelley bm, sussman al, williams rc, et al. ‘they don’t ask me so i don’t tell them’: patient-clinician communication about traditional, complementary and alternative medicine. ann fam med 2009;7:139-44. 26. evans m, sharp d, shaw a. developing a model of decision-making about complementary therapy use for patients with cancer: a qualitative study. patient educ couns 2012; 89:374-80. 27. spector re. cultural diversity in health and illness. 8th ed. needham, ma: pearson; 2013. 28. brown cg. the healing gods: complementary and alternative medicine in christian america. new york, ny: oxford university press; 2013. 29. gardiner p, phillips r, shaughnessy af. herbal and dietary supplement-drug interactions in patients with chronic illnesses. am fam physician 2008;77:73-8. 30. martin lr, williams sl, haskard kb, dimatteo mr. the challenge of patient adherence. ther clin risk manag 2005;1:189-99. 31. statista survey. percentage of u.s. adults who have ever tried alternative practitioners as of 2017. new york: statistathe statistics portal. available from: https://www-statistacom.libdata.lib.ua.edu/statistics/668542/us-adults-who-evertried-alternative-practitioners-treatments/. 32. statista survey. percentage of u.s. adults believe in positive effects of complementary and alternative medicine (cam) as of 2017. new york: statista-the statistics portal. available from: https://www-statista-com.libdata.lib.ua.edu/statistics/667468/us-adults-with-positive-views-on-alternativemedicine-by-age/. accessed: march 2018. [qualitative research in medicine & healthcare 2018; 2:7161] [page 19] article no nco mm er cia l u se on ly layout 1 introduction this qualitative research study involves the analysis of interviews from a small pool of physicians, in which we asked them about their use of clinical practice guidelines (cpgs), evolution, gaps in adherence of cpgs, and how patients may be affected by these practices. cpgs are evidence-based recommendations that are intended to optimize and standardize patient care based on the best evidence available.1 they are developed by reviewing and assessing clinical evidence in a specific therapeutic area. physician experts are heavily involved in developing guidelines and offering recommendations based on the strength of evidence currently available. research shows that adherence to cpgs varies, in differing levels, in all fields of medicine and public health.2 furthermore, studies looking at sustainability of adherence, albeit a rather new term studied in healthcare, after an implementation plan show partial sustainability of healthcare innovations rather than a complete sustainability.2,3 how guideline adherence affects patients is still under investigation. this qualitative research study was designed to explore one small and rather introductory segment of adherence; and more precisely, how physicians from different medical specialties currently view and adopt cpgs as opposed to the time when they were medical residents. we aimed to understand how the evolution of cpgs from the 1990s to 2016 or earlier, had impacted physicians’ views and adherence to practice guidelines. we also explored the barriers of cpg non-adherence. the goals of the study were twofold. first goal was to help with future studies in studying the most important barriers to adherence, quality of care to patients, and sustainable implementations plans of adherence to cpgs. secondly, the goal was to provide insights into the social space of action-oriented recommendations that may improve the a view into clinical practice guidelines: who uses them, who doesn’t and possibly, why mihaela c. munteanu,1,2 julie choi jordan3 1university of drexel, philadelphia, pa; 2incyte corporation, wilmington, de; 3teva pharmaceuticals, philadelphia, pa, usa abstract medical professional societies each develop specific clinical practice guidelines (cpgs). based on the best available evidence, cpgs are intended to control variability and optimize quality of care in clinical practice. yet, healthcare providers often do not accept or adhere to guidelines, but their reasons are not fully understood. when providers opt to choose not to follow cpgs, unfavorable patient outcomes including unequal access to treatment become negative consequences. in this small qualitative study, we will explore what causes non-adherence to cpgs and what changes have been made to cpgs from when physicians completed their medical residencies to the present. we interviewed physicians from a variety of medical specialties to assess how these changes may influence guideline adherence as well as the consequences of not following them. we found that guidelines may not be followed in cases where patients have comorbidities that are not described in the guidelines or when physicians do not incorporate new evidence and technology advances into their practice. in some specialties, physicians can develop a poor reputation if they do not adhere to the cpgs, and managed care agencies may deny reimbursement for care they provided. to best serve the physician and the patient, we need to find ways to improve cpg adherence. tactics such as improving the methodology of cpg formation, using information technology, and creating ways to change physician attitudes and behavior are all viable options. correspondence: mihaela c. munteanu, doctorate candidate, university of drexel, philadelphia, usa. tel: +1.484.325-4103. email: tantinica@gmail.com acknowledgements: we would like to acknowledge dr. edward bureau from the university of drexel for his advice and guidance on qualitative research. key words: adherence, clinical practice guidelines (cpgs), physician, patients’ comorbidities, medical residency contributions: mcm, concept, design, review and format of the data, analysis and interpretation of data, draft and final revision of the manuscript; jcj, interpretation of data, draft and final revision of the manuscript. funding: this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. received for publication: 15 january 2017. revision received: 23 april 2017. accepted for publication: 24 april 2017. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright m.c. munteanu and j. choi jordan, 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:44-50 doi:10.4081/qrmh.2017.6544 [page 44] [qualitative research in medicine & healthcare 2017; 1:6544] qualitative research in medicine & healthcare 2017; volume 1:44-50 no nco mm er cia l u se on ly utilization of and adherence to cpgs by physicians across different specialties. problem statement and purpose because we lack understanding of how current cpgs are meaningful to doctors in their professional workplace compared to their residency program, three research questions are as follows: (a) what do doctors want to have changed in the development of cpgs?, (b) do doctors believe that current cpgs are useful in their practice or today’s clinical centers from the time they were residents?, and (c) how do doctors find current cpgs helpful in providing equal treatment to patients (i.e., quality of care to patients)? we argue that what can be learned from interviewees’ situated accounts that are generated in the context of a researcher-interviewee relationship is only possible from qualitative research.4-6 this type of meaningful knowledge from participants’ direct social world as compared to quantitative research knowledge is both unique and critical in studying complex problem statements with implications in healthcare. likewise, these implications can be further studied in all their complexity if the main problem is understood at a fine-grained level first. sample, framework we interviewed ten physician participants. they all trained and were licensed in the united states (us). the participants involved were not restricted to one medical specialty; both former and currently practicing physicians participated. the periods in which they conducted their residencies were 10 to 20 years prior to these interviews (january 2016). the purposive sample and type of medicine were also based on availability to participate in the interviews irrespective of specialty.5-7 currently, all participants are either still practicing medicine, and/or now work in the drug research and development industry after practicing medicine full time medicine first. all voluntary participants signed and dated an informed consent. the approach of the study for the data collection and design is a modified phenomenological approach, following moustakas.8 the participants were from different specialties of medicine. five individual interviews and one collective focus-group interview of five different participants were conducted. the focus group interview and two individual interviews were conducted in person; the three other individual interviews were conducted by phone. as in table 1, the medical specialties of the participants (n) were oncology (3), neurology (2), cardiology (1), infectious disease (1), pediatric rehabilitation (1), and internal medicine (2). most participants resided in the east coast region of the us, while the west coast, mid-west, and southern regions of the us were represented by 1 participant each. for all 10 participants in this study, the duration of medical practice, including those not currently in practice, was at least 10 years, exclusive of the duration of their residency programs. to protect confidentiality, all participants are referenced by numbers. three (1, 6, and 9) of the 10 participants are women; seven (2, 3, 4, 5, 7, 8, and 10) are men. the individual and focus group interviews lasted approximately 30 to 45 minutes, with follow ups where needed, and 1 hour, respectively. physicians were asked semi-structured questions designed in accordance to the purpose of the study.5,6,9 types of questions followed the direction given by merriam.9 we recorded and transcribed the interviews according to merriam.9 we followed the guidelines for developing interview questions and writing transcripts as per merriam.9 we also developed some of the interview questions in line with the theoretical framework drawn from literature on attitudes and potential barriers to the use of standardized treatment guidelines such as cpgs.10 we considered [qualitative research in medicine & healthcare 2017; 1:6544] [page 45] article table 1. medical specialty, current role, and gender of all the participants. participants* medical specialty current role° gender 1 oncology/internal medicine pharmaceutical industry and in practice f 2 neurology pharmaceutical industry (for approximately last 4 years) m 3 oncology (nuclear medicine)/internal medicine in practice m 4 internal medicine pharmaceutical industry (for approximately last 7 years) m 5 oncology/internal medicine in practice m 6 internal medicine pharmaceutical industry (for approximately 4 years) f 7 cardiology in practice m 8 infectious disease pharmaceutical industry and in practice m 9 orthopedic pediatric medicine in practice f 10 neurology pharmaceutical industry (for approximately 5 years) m *participants are referenced by numbers. °all participants completed a medical residency program in the us, and have had experience in practicing medicine full time before the current role assessed in 2016. no nco mm er cia l u se on ly the barriers stemming from the physician’s knowledge of cpgs, attitudes towards cpgs, resource limitations and their behavioral response to guidelines. furthermore, to determine themes present in the participants’ behavior and attitudes we analyzed the field notes, gathered during the interviews, together with the transcripts of the focus group and individual interviews to determine themes.5,7,9,11 we used descriptive and in vivo manual coding via two recursive cycles as described by saldana.11 results three themes emerged from the interview data set and field notes: a) awareness of cpgs, b) minor gaps in adherence of cpgs and consequences, and c) moving forward: good adherence to and acceptance of cpgs (figure 1). while not all will be discussed fully in this paper due to space limitations they are described next individually. excerpts from the interviews conducted will be presented as well to support these themes. awareness of clinical practice guidelines theme in this theme, found through coding the data, the study participants shared that they were either not aware of cpgs as medical residents, or that cpgs did not exist during their residency; the latter was more prevalent. this theme had three subthemes: (a) cpgs evolved since the 1990s and early 2000s; (b) variability in practicing medicine was more prevalent and more accepted in the 1990s and early 2000s than currently; and (c) cpgs have become a resource for physicians and provide education with the option to retain flexibility. these subthemes will not be discussed individually in this paper but referred to in the discussion. during the 10-20 years between our interviewees’ participation in residency programs and their current roles, there was an evolution in the development of cpgs. the participants indicated that there was much more variability in practicing medicine in the past and that they wished they had more standardization in the clinical practice during their residency. clinical practice guidelines adherence and consequences theme currently cpgs have high adherence and are recognized as evidence-based recommendations, but there remains a small group of physicians not adhering to them. the data gathered from this small sample support this notion. in this theme of minor gaps in the cpg adherence and consequences, participants number 1, 7, and 6 describe it below as an ‘attitude’ in different interviews; this concept has been found in the literature.10 1: there are some physicians who, i don’t know that they run out of time, but they just wouldn’t make time to do that [follow cpgs]. they believe it the way they’ve learned to practice and it’s probably more the older physicians that are closer to retirement who’ve been out in private practice for a long time. they have their usual selection of what they use for first line, second line, third line, fourth line salvage, whatever, palliation, and they will continue to use that no matter. whether they attend meetings and learn about new things or not, they have their little like we used to call cookbook recipe kind of way of treating and that’s what they use. interviewer: it’s not necessarily the time, it is more of an attitude? 1: it’s an attitude. that’s exactly, yeah. 7: .... i have a number of partners i practice with… the [page 46] [qualitative research in medicine & healthcare 2017; 1:6544] article figure 1. themes and subthemes. three themes emerged from the interview data set and field notes: awareness of clinical practice guidelines (left); moving forward: good adherence to and acceptance of clinical practice guidelines (center); minor gaps in adherence of clinical practice guidelines and consequences (right). no nco mm er cia l u se on ly older the guy is that i’m coming behind, the less likely he is ... 6: to even be aware. i was in a practice with a bunch of really senior people, like in their 60s, and they were not even aware of the guidelines in many cases. interviewer: why do you think that is? 6: physicians pride themselves on the more years of practice, the more experience you have. you become a better doctor. i mean, just the more things you see. and that’s what a lot of physicians pride themselves on. and these young people coming up with guidelines, ‘what do they know?’ so that is, or carries a lot of the attitude. participant number four shares the sentiment and further goes on to say that as part of his daily job, he reviews the inferior patient outcomes that occur when doctors do not follow cpgs: 4: as i review safety reports on my current job, it becomes very clear the physicians who are following established guidelines versus those who aren’t because you can see the gaps in treatment. unfortunately, the patient outcomes show it. participant number five shares the feeling that there are still gaps in adherence to cpgs. from his point of view as a practicing physician in oncology, there are a few reasons: 5: there is variation in how much individual physicians use practice guidelines. i think there are a variety of reasons for that. as you mentioned number 1, physicians may feel that they don’t want to change their ways. number 2, physicians may be aware of guidelines but disagree. some physicians think more is better and want to add the next treatment, the latest treatment every time regardless of what the guidelines say or what the evidence supports. number 3, i would say some physicians are not as savvy with using the internet to access guidelines as others. for example, we have some physicians in our practice who really struggle with even using an emr [electronic medical record] and are much more comfortable with the old pen and paper documentation. developing a poor reputation as a consequence of clinical practice guidelines non-adherence the consequences of not following cpgs adequately or comprehensively can include poor patient outcomes, worsened reputations for the doctors or their working procedures, followed by, for example, by doctors not receiving performance bonuses from their practices as a penalty. interviewees stated these various consequences. overall, the interviewees reported that the consequences vary depending on the medical specialty. further, in large medical specialties such as cardiology and infectious disease, patient outcomes and adherence to treatment guidelines are tightly regulated as voiced by participant number seven below. this informal regulation is because in some of these specialties, good patient outcomes have been associated with use of specific drugs through large unequivocal trial data. likewise, some specialties have more data available to handle complex patient cases. participant number seven, who practices at six private medical offices, each composed of six or more cardiologists, and is associated with a large hospital in the southern us expresses this point below: 7: well, depending on your specialty, internal medicine is very complicated. you deal with the whole range of certain disease processes; disease coverages are very broad. you deal with a lot of very unusual diseases. infectious disease is difficult. neurology is the worst. but in cardiology, it’s very straightforward. the guidelines become very important to us. i mean, you have to follow the guidelines with systolic heart failure, and if you don’t, then you’re really outside of the standard of care. we report quality statistics to cms [centers for medicare & medicaid services] always and do individual performance measurements on all practices. interviewer: it is about reputation? 7: yeah! our specialty is very different that way. for acute mi [myocardial infarction] treatment, you have to get arteries open in xx minutes if you have an acute st elevation line. so those data on your compliance with the xx-minute stemi [st-segment elevation myocardial infarction] ... data are publicly reported via the acc [american college of cardiology] for the acc database, so everybody knows that. internally, we monitor our quality statistics. if i don’t meet that more than a benchmark, i wouldn’t get payment. financial consequences of not following clinical practice guidelines the participating doctors noted that if cpgs are not followed and the poor performance of a medical office is made public, third-party insurance payers who may monitor compliance may not send patient referrals. additionally, bills for patients, or bills for the complications of the first treatment, may not consequently be paid. our participants did not mention losing the accreditation of an office yet or of a hospital, although our sample was very small. but they voiced this behavior may affect patients negatively in the long run. a few from the focus group interview describe below: [qualitative research in medicine & healthcare 2017; 1:6544] [page 47] article no nco mm er cia l u se on ly 7: there are cms [centers for medicare & medicaid services] changes in reimbursement that are really important about the newer events. you’re not allowed to have a dvt [deep venous thrombosis] in the hospital ...so there are rules about dvt prophylaxis in our hospital. if you don’t write for dvt prophylaxis as per the guidelines that are recommended by the acc… i mean, it’s probably the orthopedic society or the internal medicine societies that talk about inpatient medicine. if you don’t follow those guidelines, the hospital administrators will call you and say you didn’t do dvt prophylaxis. we have prompts on our computer systems that say you didn’t do dvt prophylaxis. 10: they don’t pay for those complications [in my specialty] and patients suffer... moving forward: good adherence and acceptance of clinical practice guidelines theme the interviews revealed multiple examples of good adherence to cpgs in different medical specialties. the data describe an improvement in the content of and adherence to cpgs from the time the participants were residents over time suggesting a trend and desires in the field of medicine to good quality of care. the participants reiterated that following the cpgs felt like following the best choice as opposed to a mandatory policy. also, there was agreement that they have seen an increased adherence to cpgs over the years, which coincided with overall better patient outcomes. participants liked the methodology by which cpgs are developed. participant number four describes the cpgs as an improvement in raising the bar in providing equal high-quality treatment for patients once doctors accept the cpgs: 4: there was a lot of resistance, but i think gradual acceptance, especially when they’re proven to provide good outcomes and lower cost, i think that’s when physicians finally got it, and when they realized that they were stakeholders of the process. it wasn’t a system where someone is dictating to them/us what they’re going to do... furthermore, both participants number four and three explain that the guidelines can streamline medicine in view of the many treatments available and many specialists seeing the same patient. having the guidelines available directly in emrs allows one to easily access what is best for the patient right away and to decide if changes to treatment are needed and when. 4: i think having everything computerized and in the electronic medical record provides all that information to all the patient’s treatment physicians….so that they can see exactly what the patient is going through, what they’ve had done. it streamlines care. 3: i think it’s a definite improvement, compared to how we did things 20 years ago. the easier it is to access these things, to collaborate, and get everyone on the same page working together to make the specialty shine, it’s important. i think more effort should be made to do this and i think that’s the case. sound methodology for developing and updating clinical practice guidelines the advancement of information technology has facilitated the use of cpgs. most hospitals now have cpgs incorporated as part of the emrs. in the past 15 to 20 years, our participants saw improvements in both the availability and accessibility of cpgs. with regards to the sound methodology of cpgs, a current practicing physician who is also part of the development committee for cpgs, describes the benefits of the process: 3: the procedures…are orchestrated by national and international professional organizations... there are committees formed that go over these things and they enlist participation of recognized clinical experts in a given field. those who have published on a given topic about a given procedure…they put together guidelines and algorithms that are based on peer-reviewed research with comments on quality of existing research and, also grey areas that often require additional clinical judgment. while there may be some opposition to adopting guidelines due to fear of losing the ability to use judgement and experience, proponents argue that having evidence-based guidelines will offer an authoritative source of information that can empower clinicians, particularly those who do not get the opportunity to discuss their cases with colleagues and experts.12 this current view was shared in those interviewed in this study. exceptions to when not to follow clinical practice guidelines we found that doctors agree that there are exceptions when it is acceptable not to follow cpgs, especially when patients’ safety is concerned. physicians are trained to make clinical judgements that will provide the best outcome for the patient. clinical judgments that would be in opposition to the guidelines were a valid reason given by all interviewed, and perhaps described the best by participant number one: 1: these are guideline recommendations and that’s exactly what they are, guidelines to help us make a decision, but they may or may not necessarily be the right combination, for instance, chemotherapy for your particular tumor because, say, in colon cancer, we recommend oxaliplatin in … but oxaliplatin can make neuropathy from diabetes worse. we may, in that case, not want to give oxaliplatin depending on the patient, the status of their diabetes. [page 48] [qualitative research in medicine & healthcare 2017; 1:6544] article no nco mm er cia l u se on ly participants described sometimes that the reason for not following cpgs is an attitude or behavior. cpgs are not followed sometimes because some doctors pride themselves in seniority and they do not believe they need to make changes, particularly if junior physicians are creating the guidelines. 4: physicians pride themselves on the more years of practice, the more experience you have. you become a better doctor. i mean, just the more things you see. additionally, the participants believe that doctors should still have flexibility and be allowed to exercise their clinical judgment. doctors do not like to be penalized when they cannot adhere to cpgs because of patients’ comorbidities. this experience was described as follows: 5: patients don’t always fit. physicians can have patients that clearly will not be able to tolerate what is recommended in clinical practice guidelines and that’s an example when it’s not appropriate to really stick with a guideline…patient comorbidities are a common example of when it’s appropriate to deviate from guidelines. discussion based on participants’ accounts, we were able to understand participants’ perspectives on cpgs from their time as residents through to their socialization into the medical community. while cpgs are evidence-based recommendations with high adherence, some physicians still do not follow them. there are a few significant reasons to explain when and why cpgs are not followed. all the participants agreed that it is acceptable for a physician to deviate from the cpgs when patients have comorbidities that are not detailed in the guidelines. this finding of patients’ care was one of many situations also described in the literature.13 further, participants in this study indicated that the most significant reason for non-adherence was patient comorbidities. participants shared this explanation unanimously. other factors or barriers described by physicians in both this study and the literature included physician seniority and experience in the field.14,15a physician with many years of practice may not see a personal need to consult cpgs. in addition, some doctors do not know how to utilize certain technologies as mentioned by some participants. many physicians were trained in a time where textbook and journals were the main source of education. the emergence of the internet and devices that promote the spread of medical information has had a dramatic impact on the medical community, and not all physicians are keeping up. these important findings can be further studied in research with larger sample sizes and by focusing on each medical specialty. by understanding what these barriers are, we may find ways to eliminate them. for example, future cpgs and updates of current guidelines may benefit from discussing how patients’ comorbidities can influence adequate treatment for patients. cpgs can be designed to allow flexibility in practice when comorbidities are present. this way physicians do not have to worry about reimbursement and being labeled as non-adherent. cpgs are updated regularly with experts from the field who apply minimal bias and base their recommendations on the best research available.1,16,17 when the participants were asked what they would change with regards to the methodology of cpg development, they did not have recommendations. because doctors like the methodology by which cpgs are developed and updated, it has led to the acceptance of and adherence to cpgs. this satisfaction, unanimous among our participants, was not always reflected in the literature.18-20 our findings are from a small sample size, and our participants expressed that they knew colleagues who were dissatisfied by the methodology of cpg development. some participants mentioned that they knew of colleagues who did not follow cpgs as documented also in the literature.3 this was because they did not agree with the tools used in developing cpgs or did not agree with the guidelines themselves. our sample of 10 doctors, while diverse in specialties, is smaller than those in other published data. this diversity allowed a widespread representation and fuller understanding across medical fields. through this deep journey of the doctors interviewed in a qualitative research setting, understanding can be derived to make sustained improvement to healthcare, and offer quality of care to patients. consequently, unique insights from conversations as found in this qualitative research study can be examined later in larger studies, in what influences their decisions to adhere consistently, or not adhere, to cpgs. conclusions we recommend that cpgs should not only be evaluated on sound methodology, but should also address the barriers that cause non-adherence and perhaps reimbursement. one recommendation for adherence and sustainability of cpgs is to include sections that deal with patients’ comorbidities and introduce parameters that can be used as a decision tree for all doctors. medical membership associations and hospital administrators can conduct surveys on these items to ensure a consensus, in addition to reaching out to the experts, is achieved before implementing cpgs. secondly, it is important that doctors have a universal system of documenting in the medical chart or the emr when they deviate from the guidelines. in this way, data trends can be shared systematically with the cpg development committees. to increase doctors’ adherence to the guidelines, we suggest that training could be implemented to help [qualitative research in medicine & healthcare 2017; 1:6544] [page 49] article no nco mm er cia l u se on ly physicians use technology so that they can better access medical information. tailored and structural organizational solutions can be given to change physician attitude and behavior; for example, many institutions are mandating emr versus ledger-type patient records. with time and flexibility, we believe that practical solutions can improve adherence to cpgs so that patients being treated in any field can all be given a reliable standard of care. references 1. graham, r, mancher, m, wolman, d, at al. clinical practice guidelines we can trust. washington, dc: the national academies press; 2011. 2. ament smc, de groot jja, maessen jmc, et al. sustainability of professionals’ adherence to clinical practice guidelines in medical care: a systematic review. bmj open 2015;5:1-13. 3. wiltsey s, kimberly j, cook n, et al. the sustainability of new programs and innovations: a review of the empirical literature and recommendations for future research. implement sci 2012;7:2-17. 4. berkwits, m, inui, st. making use of qualitative research techniques. j gen intern med 1998;13:195-9. 5. creswell, jw. qualitative inquiry and research design: choosing among five approaches. 3rd ed. thousand oaks, ca: sage publications; 2013. 6. creswell, jw. research design: qualitative, quantitative, and mixed methods approaches. 4th ed. thousand oaks, ca: sage; 2014. 7. malterud, k. qualitative research: standards, challenges, and guidelines. lancet 2001;358:483-8. 8. moustakas, c. phenomenological research methods. thousand oaks, ca: sage publications, inc.; 1994. 9. merriam sb. qualitative research: a guide to design and implementation. san francisco, ca: jossey-bass, a wiley imprint; 2009. 10. cabana, md, rand, cs, powe, nr, et al. why don’t physicians follow clinical practice guidelines? jama 1999;282:1458–64. 11. saldana j. the coding manual for qualitative researchers. 2nd ed. los angeles, ca: sage; 2015. 12. raghavan d, kim es. clinical pathways: are we training cookbook oncologists? 2016 jun 1 available from: http:// am.asco.org/clinical-pathways-are-we-training-cookbookoncologists?et_cid=37910128&et_rid=1614915405&linkid =raghavan 13. erickson, bk, martin, jy, shah, mm, et al. reasons for failure to deliver national comprehensive cancer network (nccn)-adherent care in the treatment of epithelial ovarian cancer at an nccn cancer center. gynecol oncol 2014;133:142–6. 14. falandry, c, campone, m, cartron, g, et al. trends in gcsf use in 990 patients after eortc and asco guidelines. eur j cancer 2010;46:2389–98. 15. link, h, nietsch, j, kerkmann, m, ortner, p. adherence to granulocyte-colony stimulating factor (g-csf) guidelines to reduce the incidence of febrile neutropenia after chemotherapy: a representative sample survey in germany. support care cancer 2016;24:67–6. 16. goldberg, sl, akard, lp, dugan, mj, et al. barriers to physician adherence to evidence-based monitoring guidelines in chronic myelogenous leukemia. jop 2015;11:398–404. 17. gnant, m. guidelines: usefulness and limitations. breast care (basel) 2013;8:172-3. 18. abdelsattar, zm, reames, bn, regenbogen, se, et al. critical evaluation of the scientific content in clinical practice guidelines. cancer 2015;121:783–9. 19. lenzer j, hoffman j, furberg c, ioannidis j. ensuring the integrity of clinical practice guidelines: a tool for protecting patients. bmj 2013;347:1–10. 20. reames, bn, krell, rw, ponto, sn, wong, sl. critical evaluation of oncology clinical practice guidelines. jco 2013;31:2563–68. [page 50] [qualitative research in medicine & healthcare 2017; 1:6544] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2017; 1:6300] [page 23] introduction this paper examines attitudes about the national healthcare scheme (nhis) in ghana, west africa, through qualitative research. specifically we offer accounts by elders (which we define as members of the population 50 years and older) with pre-existing health challenges in the village of agate. this group is important since the proportion of the population older than 60 is estimated to reach 12% in 2050.1 (p. 1) this research is shaped by our position (as a research team) that healthcare is a human right and that a properly functioning and funded program providing universal coverage to all citizens (with hands-on citizen participation) can promote improved physical and social well-being. ghana, population 25 million,2 (p. 1) is categorized as lower-middle income by the united nations.3 poverty predominates in rural areas and a quarter of ghanaians are poor using measures of consumption poverty, lack of access to assets and services and human development.3 (p. 3) after declaring independence from british rule in 1957, healthcare was available without point of service fee.4 (p. 128) this changed to a cash and carry system in the 1980s,5 creating access obstacles.4 president kufuor (elected 2001 and 2005),6 attempted to provide national healthcare for all and the national health insurance law passed in 2003. according to the district schemes there is a minimum premium and the plan covers 95% of prevalent diseases in ghana.7 the premium mandate excludes children under… 18 yrs if…parents are registered, pregnant women, above 70 years and the core [extreme] poor8 (p. 158) as well as retirees and/or contributors to social security and national insurance trust.9 (p. 7) in addition to fees, it is funded by a 2.5% value added tax and services covered include outpaoh, as for the health insurance…it’s good, but…: rural elders in agate, ghana, discuss the national healthcare insurance scheme eileen smith-cavros,1 joyce avotri-wuaku,1 albert wuaku,2 amal bhullar3 1department of conflict resolution studies, nova southeastern university, fort lauderdale, fl; 2religious studies department, school of international and public affairs, florida international university, miami, fl; 3department of biological sciences, nova southeastern university, fort lauderdale, fl, usa abstract this paper investigates the ghanaian national healthcare insurance scheme (nhis) through interviews with 28 elders over 50 years old with pre-existing illnesses in agate, a rural village in ghana. our goals were to obtain snapshot views of the lives, in relation to health, wellness, and nhis, of participants. elders possessed reasonable information about nhis. for most enrollees, nhis provided peace of mind against financially-related health challenges, however, inability to afford non-covered medicines sometimes interfered with treatment. most interviewees, insured or not, reported continuing chronic health problems. based on qualitative data, we describe possibilities to improve elder experiences including: transportation to medical care, increased drug coverage, and faith-based health partnerships. correspondence: eileen smith-cavros, department of conflict resolution studies, nova southeastern university, 33314 fort lauderdale, fl, usa. tel: +1.954.2628172. e-mail: eilesmit@nova.edu key words: elders; health; policy; africa; qualitative study. contributions: es-c arranged transcription of interviews, coding, data analysis, literature research, wrote portions of article, edited article, project photographer; jaw conducted interviews, data analysis, literature research, wrote portions of article, edited article; aw conducted interviews, initial data analysis, literature research, wrote portions of article, edited article; ab coding, data analysis, literature research, wrote portions of article, edited article. conflict of interest: the authors declare no potential conflict of interest. funding: financial support for this project was provided through nova southeastern university president’s faculty research and development grant project #335869. acknowledgements: the authors would like to thank the villagers of agate, ghana for generously sharing their stories with us and we are also grateful to the chief and community council of elders for their assistance. we thank our friend and driver chuku for his help and knowledge in the field and on the road. finally, we posthumously extend our gratitude to dr. samuel wuaku for his hospitality during our fieldwork and his many years serving the medical needs of the people of ghana. received for publication: 21 september 2016. revision received: 16 november 2016. accepted for publication: 30 november 2016. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright e. smith-cavros et al., 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:23-28 doi:10.4081/qrmh.2017.6300 qualitative research in medicine & healthcare 2017; volume 1:23-28 no nco mm er cia l u se on ly tient consultations, essential drugs, inpatient care and shared accommodation, maternity care (normal and caesarean delivery), eye care, dental care and emergency care.7 (p. 224) covered diseases include malaria, diarrhea, upper respiratory tract infections, skin diseases, hypertension, asthma, diabetes.9 exclusions include most cancers (except breast and cervical) and organ transplants,10,11 as well as some medications. nhis was implemented just over a decade ago, and various researches have examined facets of its implementation and enrollment. implementation of nhis has been found by researchers to have negative and positive outcomes so far. the positive outcomes reported included increased positive birth outcomes9 and improved care access for urban women.10 negative outcomes reported included increased responsibilities for healthcare workers. 12attitudes of ghanaian citizens about nhis and their enrollment in nhis were influenced by: gender, wealth, ethnicity, education and religion.13,14 reported enrollment has varied depending on the source with a 2012 ngo showing nhis: only covered around 18% of the population when...government…cited coverage as being as high as 67%...government revised [their later] figures downwards, to around 34%.15 (p. 59) the private and public sectors agree that actual enrollment needs improvement to reach the stated goal of covering all. the poorest who lack access to healthcare have particular enrollment issues. provider-related concerns also remain a challenge to nhis. nhis noted recently: ghana chamber of pharmacy nearly cut supply of medicines to health facilities that depend on the nhis to pay for their medicines.16 (p. 1) public hospital doctors went on strike in summer of 2015 to protest lack of payments, working conditions, and medicine shortages.17,18 the ghanaian elderly population is growing and most live in rural areas with limited services.19 mba20 noted the numbers of elderly returning to rural hometowns after urban living, for opportunities in farming. many call nhis a role model for other sub-saharan [african] countries,5 (p. 39) therefore research on how it impacts the elderly is important. materials and methods this study was conducted during june 2012 in agate (local population estimated at 2500), a rural community about 157 kilometers from the capital, accra.21 agate (hohoe municipality) is in the volta region22 where most residents work in agriculture.23 the 2010 ghana census estimates the municipality population as approximately 167,016.24 (p. 16) rural residents over 65 years number around 8.6%.24 (p. 16) thirty-eight percent of rural residents utilize water from rivers/streams for drinking24 (p. 57) and 47% have no toilet in-house.24 (p. 59) agate’s population offered the under-researched and specific demographics targeted: rural, elder poor with various recent illnesses and two research team members had previous experience in agate. many households are extended families including elders. elders often supplement agricultural work with remittances from relatives in cities or abroad. commonly accessed hospitals are 40-64 kilometers away. the traditional chief, clan elders, queen mother, family elders, indigenous religious leaders and ritual/religious experts work with the state administrative machinery to address daily activities, needs and community disputes. agate is predominantly christian. catholic, evangelical presbyterian, anglican, pentecostal and african independent churches are represented. islam has a much stronger presence in northern ghana and is less common in many of volta region’s rural villages, therefore it was not part of this study. agate is regionally well-known for its heavy concentration of diverse religious institutions many of which specialize in spiritual healing. we met with the council of elders and then the village chief to provide project information and request permission to interview. our key informant, the chief’s son (present during half of total interviews), provided introductions and volunteer access for snowball sampling. participants’ criteria included: experiencing illness within the previous two years and over 50 years old. we performed 28 semi-structured interviews with men and women over a week in june 2012 at participants’ dwellings to prevent mobility from being a selection issue and included participants from a diverse (but not representative) selection of the 19+ houses of worship and others who did not attend traditional church. informed consent was obtained verbally in ewe dialect and ewe interviews were performed by one male and one female research team members who were born in ghana (terminal degrees and research experience in qualitative research, citis certification, and institutional review board approval). no participants dropped out, although one was excluded for age. all participants were given a t-shirt or soap as a thank you. interviews (20 minutes to hour-long in length) were recorded. a chart was completed immediately after interviews among the research team members (on day of interview) to chart immediate interpretation of question responses (for later data cross checking). interviews were transcribed and translated in the united states by an external paid ghanaian translator. transcripts were not reviewed by participants due to budget, and travel limitations, however, for accuracy all transcriptions were rereviewed by an ewe-speaking interviewers on our team. photographs we took of participants were delivered a year later to be distributed to participants. our goals were the following: to obtain snapshot views of the lives, in relation to health and nhis, of rural elders in our sample; to explore the sources and level of local knowledge about nhis; to collect information on why participants had or did not have nhis; to determine [page 24] [qualitative research in medicine & healthcare 2017; 1:6300] article no nco mm er cia l u se on ly differences, similarities, and/or patterns that could be identified in regard to healthcare attitudes, access, and use across and between the groups (nhis and non-nhis participants); to examine how those who had nhis viewed their health experiences and outcomes compared with those who did not have nhis; to find out what could improve health lives of participants in regard to nhis. matrices were created to record and examine answers to close-ended questions and responses to openended questions were coded (such as positives and negatives of insurance) based on pre-field concepts. semi-quantification/limited quantification (simple percentages and categorization of most common or 9 out of 28) of close-ended research questions were used to analyze data on our exploratory questions. we subsequently utilized selected (but not all) aspects of constructivist grounded theory25 (i.e. literature review performed postanalysis, coding for actions/processes, examination of emergent themes, memoing). to reflect participants’ actions, we relied heavily on quotes (in context of interviews) the way people talked about health insurance, and their processes of seeking health care. this revealed other data-derived themes related to nhis and elder health and well-being that we did not consider in the general study design questions. data were coded manually, with initial and then focused coding as well as in vivo codes. repeating themes from interviews were determined by context, phrases, and word usage and these were ordered by mention/importance then subdivided into focused categories (like medical transportation issues and social limiting factors in healthcare). there were two data coders (one primary, one secondary) and the analysis in article was reviewed by both of the onsite interviewers and cross-checked with the day of interview data classification chart. results of 28 interviewees, 11 were males and 17 were females. participation in the study was voluntary and no one refused participation after hearing consent form and questions. interviewees were an average of 70.4 years of age (several people did not know their exact age so we always accepted their low estimate, meaning that the average age of our sample was likely older). sixty-four percent (18 participants; 6 males, 12 females) had current nhis coverage and 36% (10 participants; 5 male, 5 female) were not signed up (1 had been signed up previously but did not re-enroll). participants with and without national healthcare insurance scheme: knowledge first, we quantified knowledge (see categories below of solid knowledge, general knowledge, and low/no knowledge) about nhis in both groups (those with and without nhis). overall nhis knowledge was reported as strong with 15 of all respondents reporting or displaying solid knowledge (sharing detailed insurance working information with us in interview conversation such as specific costs, what was covered/not covered, how it worked). ten displayed more general knowledge (such as who was eligible or that it was available but not details about cost/coverage) about the insurance, and 3 (all of whom lacked nhis) possessed no knowledge (knew only of nhis existence). one of the three lacking knowledge noted, i don’t know anything about it. all i know is that it’s expensive. knowledge among the informed came from multiple sources including (in order of mention): gonggong beater (town crier who gives news), government agents, radio, and younger family members who made some health decisions for participants. we also examined insured and uninsured for knowledge about their medical issues. participants without nhis (9 out of 10) appeared to have no named medical diagnosis for most/all of their major complaints while 7 of 18 with nhis mentioned a named medical condition. participants with national healthcare insurance scheme: attitudes next, we examined the perceptions of those with nhis about health insurance: why they subscribed and ensuing positives and negatives. the perceptions of those with nhis were strongly positive overall (describing insurance as very good or good). the primary reason for having nhis was monetary – when people went to doctors/hospitals they reported that it saved them a lot of money. the second strongest positive was the interrelated idea that nhis saved worrying about money (before illness). several interviewees reported what treatment access would cost without insurance in highly specific terms: to be hospitalized a bed may cost 200,000 a day (20 ghc). imagine being hospitalized for 5 days even before…the medicines. with insurance all of that is waived. for me insurance is good indeed. negative concerns about nhis (from those who had it) were categorized in descending order: cost (lack of coverage of some medications most common complaint by far, followed by premium costs), ineffectiveness of treatment, lack of knowledge about condition/lack of doctor communication, lack of coverage of transport to doctor, facilities doctors too busy to do tests, and lack of insurance use (perceived as wasted). while insured participants were more likely to have been to a doctor or hospital recently, several with insurance reported not returning for follow-ups or discontinuing necessary medicines due to lack of coverage by nhis. one explained: i have health insurance…but…after the doctor had given me prescription… insurance doesn’t cover those drugs. i went another time and they told me the same thing...so i had to pay for the drugs…that’s the very rea [qualitative research in medicine & healthcare 2017; 1:6300] [page 25] article no nco mm er cia l u se on ly son i am not able to go (back to doctor) these days. one participant, diagnosed with glaucoma but unable to afford follow-up medication after treatment, stopped seeing the doctors, explaining, oh health insurance, it’s good in principle except that for me it’s not working… you’re told it doesn’t cover some medicines...insurance only to keep it at home, is that insurance? another interviewee accounted for their experience with health insurance in terms of frustration at feeling tricked and taken advantage of: you’ve been seen by the doctor and gone through all the processes, you are finally told at the dispensary that insurance does not cover the medicines? i thought that was a bit deceptive and unfair. the idea of unfair taking of resources (money) was also expressed by another insured as: i’m telling you the truth. you had to pay that money before you are allowed to go…[hospitals] take money from me before they’ll attend to me; so i need to get some money and take along. people with nhis discussed ineffectiveness/dissatisfaction of treatment received and lack of information about health conditions, but often did not connect these issues directly to nhis and their overall satisfaction with it. one interviewee described how: the doctor didn’t tell me anything, but he gave me medication. another explained, i realized that my water (therapy) was working more effectively than the doctor’s medicine. one woman described having a hernia and a doctor who assured her it would be removed. when she returned to the hospital the doctor was no longer there and her hernia had never been operated on. others reported clinics or doctors were too busy to perform x-rays or scans. participants without national healthcare insurance scheme: attitudes next we examined the uninsured and their reasons for not having insurance as well as overall attitudes on health/healthcare in their lives. this group was younger than the overall project participant average at 65.5 years compared to 70.4 years, unsurprising since two younger participants mentioned declining coverage due to being healthy. reasons cited for not enrolling included (in descending order with some participants mentioning more than one reason): six participants discussed religion/spiritual beliefs (only god heals or illness as caused by sin), five mentioned the high cost, two cited doctor mistrust, two noted a lack of ‘necessity,’ and one implied health choices were made by others in household. at least 3 of the five interviewees who cited high cost as a concern appeared (based on self-description) to qualify for the free nhis exemption for those 70 years+. three participants without nhis were from a single christian religious sect (not named here for the sect’s privacy reasons) with two of the three citing religious reasons for not subscribing (one citing cost). two other participants without nhis were the only project participants to mention traditional beliefs in evil spirits (jujus) in relation to illness. several uninsured stated they were thinking about [getting] it or going to get it with one explaining: oh! [the insurance is] good, it’s very good; it’s not bad at all. that’s why those of us who feel we’re not sick so we won’t go for it, we’re thinking about it. the uninsured seemed more likely to have what we called social limiting factors – they were more likely to describe challenges affecting healthcare assistance including: living alone/small households, unmarried/widowed, divorced, taking care of adult children, less help from others, inability to attend church or see doctors (physical and/or transport issues), and/or being part of a spiritual community where home visits (to sick people by pastors/congregants) are not practiced. participants with and without national healthcare insurance scheme: outcomes finally, we examined both groups and their self-described health outcomes to see how participants actually fared. the complaints in both groups often overlapped ranging from: strokes to hernia, malaria, eye problems, waist pain, leg ulcers, dizziness, high blood pressure, diarrhea, back pain, knee pain, headaches, earaches, and hernias, among other illnesses and chronic pain. serious, moderate and minor illnesses were reported fairly evenly in both groups. all previously listed illnesses were reported in both groups. of the 18 interviewees with insurance, 5 described themselves as being better and satisfied or very satisfied with health outcomes in the past two years. 2 reported themselves as okay (some minor improvement), however, they noted having continuing health issues relating to initial complaints. 11 of 18 with insurance reported clear dissatisfaction with health outcomes (requiring care/having chronic pain). of the 10 uninsured interviewees, one interviewee described himself as being in perfect health and very satisfied with health outcomes (he initially reported minor illness). one interviewee selfreported as okay (defined as minor improvement) however s/he noted having re-occurrences relating to initial complaints. the remaining 8 of the 10 without insurance reported clear dissatisfaction with outcomes and continuing health issues. the uninsured were also less likely to have visited a doctor recently for an illness, as described by this interviewee: my recent illness, they say it is stroke. the sickness is if i want to get up, i can’t get up. one side of my body won’t move. but to tell you the truth, god is my witness, i never went to the hospital. when questioned on why she was uninsured and did not go to a doctor, she responded, i don’t have money. and they say that the card expires too quickly, but as for jesus, he never dies, so i pray. the quotes demonstrate not just the inaccessibility of healthcare but how this lack of choice or control due to lack of resources is channeled to the nearest available power: spirituality. [page 26] [qualitative research in medicine & healthcare 2017; 1:6300] article no nco mm er cia l u se on ly discussion self-reported nhis enrollment was relatively high (64%) in our study. this is interesting as agate is a rural, poor village. it could be a result of our snowball sample limited to participants with recent illnesses (a selective snapshot view rather than non-biased representation of a simple random sample). nonetheless, we believe the depth of our qualitative interviews done by two ewe speakers, with whom participants were able to converse freely, does inform the conversation on important issues in regard to nhis. national healthcare insurance scheme and enrollment issues our overall goal was to find out what could improve the health livesof our participants in relation to nhis. several interviewees without insurance noted that in spite of having chosen against nhis in the past, they are actively thinking about [enrolling]. there is strong enrollment potential, particularly in the over-70 category where fees are waived. since most also expressed cost of enrollment as a negative factor, incentives for sign-ups at earlier ages could be explored. incentives might entice non-registrants who worried that they won’t use insurance so early. aggressive nhis campaigns have worked for many with insurance. however, in such a spiritually driven culture, no interviewees received nhis information from their church. given the many places of worship and amount of time elders spend there, this is an untapped avenue to increase nhis enrollment and knowledge. addressing social limiting factors and the relative solitude of some elders may increase health care and enrollment in nhis. local enrollment events tailored to those without transport or connection, might be used to foster and improve connections to community and health at the same time with wellness events, opportunities for preventative care and screenings, etc. … where people could also concurrently find out about nhis. coverage/benefit issues and national healthcare insurance scheme continuing enrollment is a challenge that can likely be addressed through improving satisfaction. our analysis showed that drug coverage was the primary complaint from subscribers, fueling the strongest negative reaction in discourse. we found that lack of medication coverage interfered with some treatment success as several described being unable to finish a course of medications or not returning to visit a doctor since they couldn’t afford the medications. covering all medicines is programmatically expensive, however, not covering certain medicines could be argued as even more expensive. if insured people stop medication prematurely or delay doctor visits (as multiple participants described), more expensive treatment may result at a great cost to the program as well as at great social cost. lack of transport to hospitals/doctors was a secondary complaint contributing to dissatisfaction among participants. transportation difficulties appeared to delay doctor visits and encouraged participants to try local remedies first. this could add higher eventual costs to nhis than providing transportation coverage would. alternately, increased availability of rural mobile clinics could address access and increase preventative care as well as advertise nhis. the research team’s support of better transport and mobile clinics should not be perceived as a refutation of existing local health options. fasting, praying, herbs, laying of hands, and worship were viewed as solace by most of our interviewees (particularly chronic sufferers and those who felt they could not afford insurance) – and as an antidote to illness by some who reported physical results from alternative practices. religion, spirituality, and national healthcare insurance scheme we found half of uninsured participants (5 of 10) described religious/spiritual considerations influencing their lack of insurance. like akazili et al.26 we found traditional african religious practitioners without insurance who saw illnesses as spiritually derived and saw little need for western medical practices. other non-insured participants from a christian sect saw god as healer and believed that illness was influenced or caused by sin. some reported their religion allowed or advocated only prayer… for treatment. how strong existing spiritual beliefs and nhis might better co-exist deserves further address by healthcare outreach specialists. for example, spiritual leaders could function as agents in increasing knowledge about and acceptance of health insurance, of preventative care and of health maintenance. several religious leaders explained how the role of doctors could be complementary with prayers, fasting and other faith-based healing methods. leaders concerned about their congregants’ health may be tapped as nhis partners. conclusions participants with insurance were generally glad they had it, visited doctors more than the unenrolled, knew more about their conditions than the unenrolled, and had more peace of mind about potential medical expenses. the enrolled reported health outcomes better than those without (although 61% still had poor outcomes). when all elders were questioned, with and without insurance (even when we included those with some re-occurrences in the positive outcome group), 68% still reported generally negative outcomes including chronic pain. while enrollment benefits rural elders, challenges remain. for our [qualitative research in medicine & healthcare 2017; 1:6300] [page 27] article no nco mm er cia l u se on ly participants, increased medication coverage and transportation and/or mobile clinics would be expected to increase access to and/or completion of treatments. nhis partnerships with religious/spiritual leaders could also have positive impacts on elder health. while cost is a concern with increased services, healthier citizens could save nhis money. returning to the overarching goal of our research, we believe that the health lives of our participants, and others, could be improved not just by expanding tangible services, but by integrating willing spiritual leaders into the insurance enrollment, insurance and health education, illness prevention, and general health support process. agate, center of healing, is a particularly important venue that could demonstrate, from mobile healthcare to faith-based partnerships, how creative healthcare solutions for rural elders might benefit the system as a whole. references 1. world health organization. ghana: looking after its older people. features 2013. available from: http://www.who.int/ features/2013/ghana-living-longer/en/ 2. ghana embassy. population. 2013. available from: http://www.ghanaembassy.org/index.php?page=population 3. ghana statistical services. poverty profile presentation (glss6). accra, ghana: ghana statistical service; 2014. 4. mills a, ataguba j, akazili j, borghi j, et al. equity in financing and use of health care in ghana, south africa, and tanzania: implications for paths to universal coverage. lancet 2012;380:126-33. 5. sarpong n, loag w, fobil j, et al. national health insurance coverage and socio-economic status in a rural district of ghana. trop med int health 2009;15:191-7. 6. government of ghana. ghana at a glance: available from: http://www.ghana.gov.gh/index.php/about-ghana/ghana-ata-glance 7. jehu-appiah c, aryeetey, g, agyepong, i, et al. household perceptions and their implications for enrollment in the national health insurance scheme in ghana. health policy plann 2012;27:222-33. 8. jehu-appiah c, aryeetey g, spaan e, et al. equity aspects of the national health insurance scheme in ghana: who is enrolling, who is not and why? soc sci med 2011;72:157-65. 9. mensah j, oppong j, schmidt c. ghana’s national health insurance scheme in the context of the health mdgs. an empirical evaluation using propensity score matching. health econ 2010;19:95-106. 10. blanchet nj, fink g, osei-akoto i. the effect of ghana’s national health insurance scheme on health care utilisation. ghana med j 2012;46:76-84. 11. yerramilli p, atagubah j. financing cancer care and control in ghana. 2014. available from: http://hgei.harvard.edu/fs/ docs/icb.topic910623.files/dcp3%20input%20-ghana.pdf 12. witter s, arhinful d, kusi a, zakariah-akoto s. the experience of ghana in implementing a user fee exemption policy to provide free delivery care. reprod health matters 2007;15:61-71. 13. dixon j, luginaah i, mkandawire p. the national health insurance scheme in ghana’s upper west region: a gendered perspective of insurance acquisition in a resource-poor setting. soc sci med 2014;122:103-12. 14. dixon j, tenkorang ey, luginnah i. ghana’s national health insurance scheme: a national level investigation of members’ perceptions of service provision. int health hum rights 2013;13:35. 15. ghana pharmaceuticals and healthcare report q3 2015. london: business monitor international; 2015. 16. national health insurance scheme. nhis providers suspend decision to charge cardholders. 2015. available from: http://www.nhis.gov.gh/news/nhis-service-providers-suspend-decision-to-charge-cardholders-4052 17. ghana web. doctors strike: 500 dead in 17 days. 2015. available from: http://www.ghanaweb.com/ghanahomepage/newsarchive/doctors-strike-500-dead-in-17-days375648 18. laary d. patients abandon government hospitals as doctors’ strike deepens. africa news. 2015. available from: http:// www.theafricareport.com/west-africa/ghana-patients-abandon-govt-hospitals-as-doctors-strike-deepens.html 19. mba cj. population ageing and poverty in rural ghana. available from: http://wikieducator.org/images/2/26/agric _chuksmba.pdf 20. mba cj. population ageing in ghana: research gaps and the way forward. j aging res 2010;2010:672157. 21. ghana districts. available from: http://www.ghanadistricts. com/ 22. government of ghana. volta region. available from: http: //www.ghana.gov.gh/index.php/about-ghana/regions/volta 23. ghana statistical service. summary report of final results. accra, sakoa press: 2012. available from: http://www.statsghana.gov.gh/docfiles/2010phc/census2010_summary_ report_of_final_results.pdf 24. ghana statistical service. population and housing census hohoe municipality. district analytical report. accra, sakoa press: 2010. available from: http://www.statsghana. gov.gh/docfiles/2010_district_report/volta/hohoe%20m un.pdf 25. charmaz k. constructing grounded theory: a practical guide through qualitative analysis. london: sage; 2006. 26. akazili j, welaga p, bawah a. is ghana’s pro-poor health insurance scheme really for the poor? evidence from northern ghana. bmc health services res b 2014;14:637. [page 28] [qualitative research in medicine & healthcare 2017; 1:6300] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2017; 1:6698] [page 73] introduction fatigue has been defined as a subjective, unpleasant symptom, which incorporates feelings that range from tiredness to total body exhaustion.1 although fatigue is a common with nearly 10% of population, at any one time, experiencing fatigue that lasts more than six months, it is often not assessed in clinical settings.2 this lack of assessment is probably due to a variety of reasons, including: the lack of consensus definition of fatigue, current assessments of fatigue are insensitive, non-specific, and uni-dimensional that may miss important dimensions of fatigue, and fatigue is an invisible symptom. hepatitis c virus (hcv) is one of the diseases where fatigue is particularly prevalent and has an impact on individuals’ lives. hcv is a blood-born viral infection that causes both hepatic and extrahepatic manifestations. acute infection with hcv often fails to clear in roughly 75% of carriers, leading to chronic hcv infection.3,4 the chronic condition may lead to liver cirrhosis, hepatocellular carcinoma or liver failure, all accompanied by extrahepatic manifestations such as debilitating physical and mental symptoms.5,6 fatigue, cognitive impairments and depression are the most common symptoms in hcv. 3,7-11 fatigue specifically, has been shown to negatively impact the health-related quality of life of those with hcv.12,13 up to 97% of hcv infected patients have reported experiencing fatigue during the course of their disease,14 and 88% of infected fatigue and hepatitis c: a focus group study christina spataro,1,2 sophie afdhal,1 ali a. weinstein,1,2 carey escheik,1 patrick austin,1 kathryn brodie,2 lynn gerber,1-3 zobair m. younossi1,3 1betty and guy beatty center for integrated research, inova health system, falls church, va; 2center for the study of chronic illness and disability, george mason university, fairfax, va; 3center for liver diseases, department of medicine, inova fairfax hospital, falls church, va, usa abstract fatigue is often undiagnosed by health professionals as it is still seen as a nonspecific symptom without standard evaluations and effective treatments. fatigue is present across many different diseases and has a profound effect on the quality of life of patients. however, it is still difficult to measure because of the lack of specificity of currently used self-report instruments. patients with chronic hepatitis c infection, (hcv), experience fatigue as one of the most debilitating symptoms. the purpose of this study was to explore the types and dimensions of fatigue experienced by patients with hcv, identify specific terms they use to describe fatigue and assess how it influences everyday activities. sixteen individuals with hcv (56% female, aged 58.1 ± 3.7 years) participated in three focus group sessions. the focus group sessions lasted between 60 and 90 minutes and were digitally recorded via audiotapes. recorded focus groups’ audiotapes were analyzed through thematic analyses. the analysis suggested two primary categories of fatigue experiences. these were: capacity and engagement in activity. capacity refers specifically to an individual’s sense of how much energy they have to do life activities or their maximum ability to produce energy. the word energy is the ability to perform work and includes one’s ability to access or utilize, expend, and restore it. the phrase engagement in activity, comprised two domains: initiation (getting started or being motivated) and personal satisfaction (value of the activity). this investigation helped to identify important domains of fatigue experienced by those with hcv. the findings augment our current understanding of fatigue for this group because the domains of fatigue and the terms used to describe it are not commonly represented in the most frequently used fatigue assessments. correspondence: ali a. weinstein, george mason university, 4400 university drive, msn 5b7, fairfax, va 22030, usa. tel: +1.703993-9632. email: aweinst2@gmu.edu key words: qualitative research; fatigue; capacity; motivation; hcv. contributions: aaw, ce, pa, lg, and zmy contributed to the conceptualization and design of the study. cs, sa, ce, pa, aaw, and lg analyzed the data and created the qualitative thematic scheme. aaw facilitated the focus groups. all authors participated in the writing and editing of the manuscript with kb providing additional literature searches and analysis of the contextual and historical context of fatigue. all authors read and approved the final manuscript. conflict of interest: the authors declare no potential conflict of interest. funding: this work was supported by the betty and guy beatty center for integrated research. received for publication: 9 march 2017. revision received: 5 july 2017. accepted for publication: 7 july 2017. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright c. spataro et al., 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:73-79 doi:10.4081/qrmh.2017.6698 qualitative research in medicine & healthcare 2017; volume 1:73-79 no nco mm er cia l u se on ly patients report experiencing some form of fatigue every day.15 not only is fatigue one of the most common symptoms reported by patients, it is regularly described as the worst and most debilitating symptom.7,9,10,16 treatments for hcv often worsen fatigue symptoms in patients, further impacting a patient’s quality of life.17 fatigue is often undiagnosed by health professionals as it is still seen as a nonspecific symptom without standard evaluations and effective treatments.7,10,11,14 since its features can vary widely from individual to individual, fatigue is often overlooked and undertreated by physicians. many patients report feeling like their doctor does not take their fatigue seriously.18 patients also often attribute their fatigue to the increasing demands of modern-life, resorting to self-treatment. the gap between the experience of patients and their physicians’ understanding of their accounts may be explained by the both the lack of physician resources and awareness, as well as the lack of a consistent way to measure and define fatigue. as a result, fatigue has many consequences on patient quality of life, their families, and costs to the healthcare system.19 this emphasizes that we need to more thoroughly define the features and domains of fatigue so that it can be identified and treated more efficiently. though fatigue is considered by healthcare professionals as a symptom, it is nonetheless classified as nonspecific and therefore marked by the complexity of psychological, social, and medical factors that characterize patients with nonspecific complaints since the era of modern medicine.20 inasmuch as clinicians are trying to optimize the well-being of their patients, however, that goal relies on sound tools to evaluate both real and perceived deficits in a way that can be used for the particular patient over time.21 although there are a wide array of tools that assess fatigue, there is no instrument that can provide both specificity and sensitivity for measuring fatigue.21 the lack of a specific and sensitive tool along with the lack of a consensus definition of fatigue is the perfect storm that leads to under diagnosis and under recognition of this important symptom. it is time to allow patients to express their experiences with fatigue so that the medical field can more properly assess and then treat this life changing complaint. we need to more fully understand the specific aspects of fatigue that patients are experiencing and its impact on their lives. obtaining a more detailed account of fatigue may lead us to improved treatment approaches that could alleviate this multi-faceted and complex experience. asking patients to discuss their symptoms and their impact on their lives may help expand the vocabulary we can use to describe and measure fatigue. the aim of this study was to explore the different dimensions of fatigue by adopting a qualitative approach that would ensure that we would understand how respondents understood and were able to express their experiences with fatigue. it was essential to investigate this aim with qualitative methodology, so we chose to approach it by means of focus groups. the main purpose of focus group research is to gain insight from respondents that would not be feasible using other methods (i.e., surveys).22 we were interested in how the patients themselves describe fatigue and therefore we wanted them to use their own words and not just survey responses. focus groups are often used as tools to develop concepts for questionnaires.23 fatigue needs to be investigated more broadly since a definitive definition of this symptom does not exist. if we are to be successful in treating fatigue within the context of hcv, first it is necessary to understand the full extent of experiences of patients with hcv. this will allow appropriate assessment tools to be designed and provide targets for potential intervention. materials and methods participants sixteen subjects were invited to participate in one of three focus group sessions. these participants were identified from a current list of patients seen at an outpatient liver clinic. potential participants were contacted via phone to gauge interest and determine availability. inclusion criteria included diagnosis of chronic hepatitis c (confirmed in medical records) and ability and willingness to provide informed consent. any condition, which in the opinion of the investigators would make the subject unsuitable for enrollment, such as documented history of mental illness was grounds for exclusion. all participants presented with hcv, seven of whom were currently on treatment with combinations of medication-based therapies. additional participant characteristics are provided in table 1. [page 74] [qualitative research in medicine & healthcare 2017; 1:6698] article table 1. participants’ characteristics. n (%) number of participants 16 gender male 7 (44) female 9 (56) age (mean±sd) 58.1±3.7 marital status married 7 (44) single 5 (31) divorced/widowed 2 (12) genotype 1a 9 (56) 1b 5 (31) unknown 2 (12) past treatment non-responder 8 (50) achieved sustained virologic response 5 (31) diagnosed cirrhosis 5 (31) sd, standard deviation. no nco mm er cia l u se on ly procedure participants provided written informed consent prior to participating in the focus group session and the institutional review board at inova fairfax hospital approved this investigation. focus group discussion was led by a moderator (author aaw) and facilitated via prepared discussion prompts (table 2). the focus group sessions lasted between 60 and 90 minutes and were digitally recorded via audiotapes. the purpose of focus groups in this study was to encourage participants to explore the dimensions of fatigue by using terms that uniquely represented their feelings of fatigue, how they thought it would be best communicated and how it impacted their lives. the use of focus groups for providing information to help design assessments and surveys has long been established.24 in addition, the focus group methodology was chosen since it allows flexibility. because we did not want to impose our own preconceived dimensions of fatigue into the discussion, we made sure that the prompts were quite general. the focus group strategy allows the moderator to probe issues in depth, address new issues as they arise, and ask participants to elaborate on their responses.24 in addition, participants can be more comfortable talking in a group rather than an individual interview and these interactions between participants can generate more discussion. analysis to understand, explore, and explain fatigue, qualitative content analysis was used. recorded focus groups’ audiotapes were analyzed to code words, sentences, or paragraphs. categories were then generated based on codes with shared content by multiple researchers (authors cs and sa). the category development involved the sorting of the codes into key ideas. these key ideas were created by examining the participants’ choice of words, considering the group context, and looking for consistency among groups and group members. then these categories were linked together into themes, trying to remain as close to the language used by the participants as possible. the development of themes was a collaborative effort by all of the authors. results after three focus groups were conducted, saturation had been reached with no new areas of fatigue being endorsed in the third focus group. one of our goals was to elaborate the terms used, refine what was meant, and use them as a basis for our thematic description. the following are the terms that are noteworthy: i) capacity refers to the amount of energy available for use, like gas tank capacity; ii) access refers to the ability to get gas to engine, like the fuel pump or fuel injector; iii) depletion refers to energy being lost, such as running out of gas; and d. restoration refers to the ability to refill energy, such as filling the gas tank. example quotes were selected and highlighted in the results section to help document this thematic structure. dimensions of fatigue given the diversity of patient history and the wide variety of symptoms that can occur in patients with hcv, initial analysis focused on identifying how fatigue was described, and then to determine if there was consensus among the participants on these descriptions. we created a word cloud to represent the most commonly used words in describing fatigue (figure 1). fatigue seemed to be present continuously in many of the individuals. one participant stated that 2 or 3 p.m. [tiredness] thing that most people have, that lasts all day for us. as participants discussed fatigue, it was clear that two different dimensions of fatigue were endorsed: physical dimensions of fatigue and mental (non-physical) dimensions of fatigue. reported physical health concerns included muscle weakness, shortness of breath, inability to move or eat, sleeping problems, and detrimental weight loss. the physical side of fatigue also included reports of constant tiredness despite adequate hours of sleep, feeling so burnt out that it was difficult to get out of bed, the need for immediate rest once energy runs out, and many reports of constant and difficult recovery from bouts of fatigue. [qualitative research in medicine & healthcare 2017; 1:6698] [page 75] article table 2. focus group discussion prompts. prompt 1 can you describe the feeling of fatigue that you associate with cld? what does fatigue feel like specifically to you is that different than how others use the word fatigue does the amount of fatigue you experience change over time? prompt 2 how does it affect your daily living? is there anything that you avoid doing? is there anything that you miss, for example that you can’t do? prompt 3 how do you manage in daily life when you have this feeling of fatigue? do you have any trick or strategies? prompt 4 has the fatigue caused you any distress? can you describe the distress? prompt 5 has anyone offered you advice about dealing with fatigue? what was it? did it help? prompt 6 if there was one thing that someone could have done/said to help you with your fatigue what would it be? cld, chronic liver disease. no nco mm er cia l u se on ly the fatigue is like being tired all the time. it’s like sleep deprivation. even though you’ve slept a full night it’s like deprivation. sleep deprivation without the actual deprivation. mental fatigue was described by the patients as debilitating in its own way. i fatigue myself because my mind is always going. some participants felt that mental fatigue could be overcome, but motivation became a barrier within the dimension of mental fatigue. some were frustrated by the belief that they have the physical capabilities, while others were resigned to their depleted activity and productivity levels. either way they were faced with the same concern that can be summarized by one patient’s statement: it messes with your mind. your focus is off, you’re more concerned with your physical well-being, you need to get past i’m feeling bad and i need to get up but it’s not happening and it messes with your mind. the mental side of fatigue takes a clear toll on patient well-being, largely due to not knowing how to handle their fatigue or its cause. i sit there at night and just can’t shut my brain down, just start thinking about everything and give myself panic attacks because i’m overanalyzing. capacity as one of the overarching themes identified during analysis, capacity is used to refer to the participant’s physical and mental capabilities. we empirically defined capacity as one’s actual or potential ability to perform and withstand both physical and mental challenges. the definition encapsulates individual ease and difficulty with which tasks can be performed. patients reported varying degrees of limitation in function, with some experiencing minimal difficulties and others who were unable to get out of bed or complete basic tasks. capacity is closely intertwined with functional ability and is further defined by these subsections: access, depletion, and restoration. access participants expressed that energy was not readily available to them and their capacity to manage fatigue was influenced by being able to access energy. thus access refers to patients’ ability to moderate their energy level when needed. in this theme, there was consensus that the act of initiating activity and avoiding resignation to the current diminished energy levels tended to help with accessing energy. participants were divided over whether their actual energy levels were diminished. despite this, difficulty accessing energy was a problem for a vast majority of the participants. the participant responses on accessing energy displayed multiple views to a similar issue. some participants felt that a sense of distraction and refusal to give in to fatigue is what allowed them to keep accessing energy. for me, energy breeds energy. if i keep doing stuff, it might feel a little painful but unless i get in a low blood sugar situation, i can keep going. so the more i do things, i won’t say the better i feel but i stay at that level and if i don’t dip down, i don’t feel horrible and fatigued. sometimes you just have to force yourself to get going and once you’re going you can. if i start doing something i’ll keep going until i’m ready to drop over dead, i’m just going to keep going, getting started is the hardest part, and it’s the getting going. [page 76] [qualitative research in medicine & healthcare 2017; 1:6698] article figure 1. word cloud depicting frequently utilized descriptors of fatigue during the focus group sessions. no nco mm er cia l u se on ly another felt that forcing themselves to access energy allowed them to accomplish more than they otherwise might. sometimes it’s not as bad but it’s like you said, you’ve got to force yourself to get out and once you’re going you can. on a saturday, for me to get out of the house before 3 p.m. is huge. if i don’t have to do something, i won’t. metaphors of motion and cars were frequently utilized by patients to describe the fatigue and energy relationship. sometimes this referred to a gas tank being quickly emptied, not being able to fill it up or even get to a gas station. one participant expressed that the energy is present, but she cannot access it. i don’t have a lack of energy, it’s an inability to access that energy. it’s like a car that won’t start. there’s gas in the tank but the car won’t start. the fatigue part of it is like sitting there all day, turning the key over and over, but it won’t start. depletion participants indicated that the rate of depletion of energy also influences their sense of capacity. depletion was conceptualized as how quickly a patient’s capacity or level of energy diminished and negatively affected their functional abilities. this is a major physical problem affecting the participant’s ability to function as well as a psychological stressor. participants expressed great frustration by the change in their previous level of energy and it proved to be an emotional topic for some. this category also helps to illustrate the differences in the way in which different participants coped with the depletion. one participant noted that they preferred to expend their energy until completely depleted. i just make it to my bed and i’m lying there. so even if i want to go i just can’t do it. it’s like mind over matter and i’m just going to burn until i can’t burn anymore and burn out. some firmly expressed that their depletion did not allow them to exceed their limited activity. if i got up today and worked a whole 8 hour day, i wouldn’t make it until tomorrow. restoration restoration also emerged as a theme that was consistently mentioned in all three focus groups. restoration refers to the process in which fatigue levels can be mitigated and then how quickly and effectively they are able to recover that loss of energy. when speaking about their fatigue, many expressed that their capacity for restoration does not exist in the way one would hope, returning energy to baseline naturally, but instead is seen as how one must behave in order to ensure that proper recovery occurs. restoration proved to be a difficult process for many and responses demonstrated a wide variety of experiences. sleep was acknowledged as a major strategy for restoration but it did not seem to be effective based on feedback: naps can help recharge but doesn’t completely get rid of fatigue. naps don’t help at all. even when i sleep well at night, i’m still tired during the day. to sleep and still wake up feeling run down is a bad feeling. exercise was a frequently endorsed strategy for restoration but some observed serious issues with recovery: when i was doing yoga, when i did go to the gym, it did make me feel better but it would take me days to recover from. i normally go to the gym every day and then by 3 o’clock i’m fatigued. but if i miss doing any kind of workout, the fatigue is worse. the frequently utilized car metaphor was applied to restoration with the comment that without proper consideration for rest, it can be detrimental: now that i’m not going to the gym, it’s kinda like a car slowly running out of gas. sooner or later you’d better stop and get the fill up or you’ll just be dead on the side of the road. just stalled out. so i gotta get back to doing some of the stuff you don’t feel like doing but you know if you do, everything else will get better. things as well as your outlook will get better. engagement in activity another overarching theme that developed was representative of patients’ personal initiation and desire to complete activities. while the capacity theme focused on the physicality of activities, this grouping was utilized to classify individuals’ attitudes when facing fatigue and the ability to successfully mobilize. thus this term was used to denote willingness and frequency with which participants took part in activities and was further defined by these subsections: initiation issues and personal satisfaction. initiation issues one of the primary barriers to activity was initiating activity due to motivation, not energy level. patients reported lack of motivation, which resulted in an inability to engage in activities without external stimuli. lack of initiation seemed to cause distress and impacted their ability to engage in activity. participant feedback regarding initiation issues focused on how difficult it was for them to overcome internal lack of motivation to engage. their statements included: [qualitative research in medicine & healthcare 2017; 1:6698] [page 77] article no nco mm er cia l u se on ly i only sleep sometimes 5 hours, 8 hours at the most a night and that’s all i need but i still have no energy during the day. it’s not like i’m tired in that way where i want to sleep all day long, lying around. my problem is that i’m awake and i have no energy, no motivation, no drive, no wanting to get out and get things done. it’s like, what’s wrong with me? i’m just watching the hours go by and the days got to go by until next thing you know its time for me to go to bed. next thing you know it’s the same thing again but i’m not getting stuff done during the day, getting things accomplished. if i have to put things off i do until i can’t put them off no more. my mental self can see myself getting up but my physical self can’t do it. frustrating because i want to. almost every day i wake up right at 9 o’clock. i only sleep 5-8 hours a night, but i still don’t have energy during the day. i’m awake and i don’t have any motivation. just sitting and watching the hours go by until it’s time to go to bed, and i’m not getting anything done during the day. i’d keep putting it off until i didn’t have to put it off anymore. i will put off going to the grocery store until there is nothing else in my refrigerator because i know i will have to get up and walk around the store. but once i get out and get going, then i get things done and i’m really happy i accomplished. but getting that first step, getting going is the hardest part. personal satisfaction while the manifestations and consequences of fatigue varied, a common theme was participants expressing varying degrees of dissatisfaction and distress with their current situation. this subcategory of personal satisfaction referred to both patients’ general disposition and their specific concerns regarding getting things accomplished. some were frustrated by an inability to get things done while others expressed dissatisfaction with what they are currently able to get done. one of the major concerns expressed in this theme was that those participants who can get things done were not satisfied with the results. participants who reported this as their main concern felt a fair degree of frustration at the loss of former abilities. many felt that they could complete activities that were essential (i.e., attending work and coordinating personal and family care) but were unable to do additional things they deemed important (i.e., produce higher caliber work, support family and friends as much as they would like) or had to at least scale back on the intensity of activities. i’m busy a lot and i make sure i don’t over-schedule myself but it makes me kinda sad because i’m always a go, go, go type of person. a lot of times i burn myself out by going so fast. affects activity schedule because i have to balance activity and can’t do all the things i want to do. discussion people who use the word fatigue may experience a variety of bodily sensations that are interpretable as symptoms to the medical community. indeed, this study showed that fatigue is a term that has different meanings to individuals and is used in a variety of ways to describe this multifaceted symptom. the participants used the term fatigue to describe both physical and mental components. our research group has frequently questioned whether people experiencing fatigue can effectively communicate fatigue experiences through standardized fatigue tests. our goal for this research was to gain an understanding of the nature and breadth of experiences of fatigue for those with hcv in their own words. the use of focus groups (qualitative methodology) was essential to accomplish this goal. it was apparent that commonly used standardized fatigue questionnaires do not include many of the fatigue domains that were discussed by those with hcv. the results of this investigation expand the spectrum of fatigue symptomatology and may provide a first step in the development of new evaluation tools. the multiple terms used to describe fatigue along with the overall findings of this study strongly suggest that a uni-dimensional conceptualization may not adequately assess fatigue. currently the symptom of fatigue is not widely understood, and most research fails to specify the multiple meanings and variations behind the fatigue symptom.7,8,10,11,25 our findings highlight these widely varied meanings of fatigue. the severity and impact of fatigue on patients emphasizes the need for more accurate assessment of fatigue in patients with hcv. understanding the multifaceted nature of fatigue and focusing on the specific symptoms of fatigue being experienced (i.e., physical or mental or both) is important as these different aspects of fatigue may require different treatment methods. a limitation of our study is that it did not address causes for fatigue. many of the focus group participants reported suffering from chronic disease and comorbidities such as obesity, diabetes, depression and hypertension all of which may contribute to fatigue or its impact. about half of our patients were also currently undergoing treatment for hcv. medications and other treatments could also have contributed to feelings of fatigue. it is interesting to note that regardless of the presence of absence of comorbidities, the participants seemed to describe a common language to express their symptoms. the focus group sessions did not have participants share their lived experiences and how their different experiences affected their fatigue. therefore, our data do not include the contextual experiences of the participants and the relationship be[page 78] [qualitative research in medicine & healthcare 2017; 1:6698] article no nco mm er cia l u se on ly tween the context and their experiences of fatigue. another limitation is the small sample size of our investigation. however, we stopped recruitment because we felt strongly that saturation was reached among the three focus groups, with explanations and experiences being very similar between all groups. a limitation of the utilization of focus groups is that the group setting can influence the responses of individuals, which can be especially problematic when a dominant member of the group monopolizes discussion. we did not specifically notice this issue in our analysis, but it is an inherent limitation to focus groups. in addition, many of the authors are experienced fatigue researchers and these experiences with fatigue could have biased the content and categorization of the participants’ experiences. these findings strongly suggest the need for further research on this topic. an overall goal of further research into fatigue should be the development of a detailed assessment that incorporates the domains of fatigue endorsed by patients in this study: physical vs. mental, capacity (including access, depletion, and restoration) and engagement in activity (including initiation issues and personal satisfaction). participation of patients will be essential in the creation of this assessment tool. it is clear from the current study that patient input is critical in fully understanding the experience of fatigue. conclusions in conclusion, this study found that within the focus group setting, the word fatigue for patients with hcv has meanings and dimensions not frequently included in standardized fatigue metrics. these focus group participants confirmed what has been reported by many investigators, that fatigue has a disruptive effect on their lives. the diversity of fatigue experiences highlights the importance of developing assessments that address the observed domains of fatigue. references 1. whitehead l. the measurement of fatigue in chronic illness: a systematic review of unidimensional and multidimensional fatigue measures. j pain symptom manage 2009;37:107– 28. 2. skapinakis p, lewis g, meltzer h. clarifying the relationship between unexplained chronic fatigue and psychiatric morbidity: results from a community survey in great britain. am j psychiatry 2000;157:1492–8. 3. forton dm, thomas hc, taylor-robinson sd. central nervous system involvement in hepatitis c virus infection. metab brain dis 2004;19:383–91. 4. blackard jt, shata mt, shire nj, sherman ke. acute hepatitis c virus infection: a chronic problem. hepatol baltim md 2008;47:321–31. 5. webster dp, klenerman p, dusheiko gm. hepatitis c. lancet 201;385:1124–35. 6. younossi zm, park h, adeyemi a, et al. a meta-analytic estimation of the burden of extra hepatic manifestations of hepatitis c. gastroenterology 2015;148:1-503. 7. jones ea. fatigue complicating chronic liver disease. metab brain dis 2016;19:421–9. 8. piche t, vanbiervliet g, cherikh f, et al. effect of ondansetron, a 5-ht3 receptor antagonist, on fatigue in chronic hepatitis c: a randomised, double blind, placebo controlled study. gut 2005;54:1169–73. 9. weissenborn k, ennen jc, bokemeyer m, et al. monoaminergic neurotransmission is altered in hepatitis c virus infected patients with chronic fatigue and cognitive impairment. gut 2006;55:1624–30. 10. zalai d, carney ce, sherman m, et al. fatigue in chronic hepatitis c infection: understanding patients’ experience from a cognitive-behavioural perspective. br j health psychol 2016;21:157–72. 11. hassoun z, willems b, deslauriers j, et al. assessment of fatigue in patients with chronic hepatitis c using the fatigue impact scale. dig dis sci 2002;47:2674–81. 12. younossi z, park h, henry l, et al. extrahepatic manifestations of hepatitis c: a meta-analysis of prevalence, quality of life, and economic burden. gastroenterology 2016;150:1599-608. 13. kramer l, hofer h, bauer e, et al. relative impact of fatigue and subclinical cognitive brain dysfunction on healthrelated quality of life in chronic hepatitis c infection. aids lond engl 2005;19:85-92. 14. hilsabeck rc, hassanein ti, perry w. biopsychosocial predictors of fatigue in chronic hepatitis c. j psychosom res 2005;58:173–8. 15. barroso j, leserman j, harmon jl, et al. fatigue in hiv-infected people: a three-year observational study. j pain symptom manage 2015;50:69–79. 16. dwight mm, kowdley kv, russo je, et al. depression, fatigue, and functional disability in patients with chronic hepatitis c. j psychosom res 2000;49:311–7. 17. el-wahab ewa. health-related quality of life among chronic hcv patients: measuring disease and treatment response impacts. ann trop med public health 2016;9:152. 18. van hoof e. the doctor-patient relationship in chronic fatigue syndrome: survey of patient perspectives. qual prim care 2009;17:263–70. 19. sabes-figuera r, mccrone p, hurley m, et al. the hidden cost of chronic fatigue to patients and their families. bmc health serv res 2010;10:56. 20. elsass p, jensen b, morup r, thorgersen mh. the recognition of fatigue: a qualitative study of life-stories from rehabilitation clients. int j psychosoc rehabil 2007;11:75–87. 21. smith e, lai j-s, cella d. building a measure of fatigue: the functional assessment of chronic illness therapy fatigue scale. pm r 2010;2:359–63. 22. morgan dl, krueger ra. when to use focus groups and why. in: successful focus groups: advancing the state of the art. thousand oaks, ca: sage publications; 1993. pp. 3–19. 23. lankshear aj. the use of focus groups in a study of attitudes to student nurse assessment. j adv nurs 1993;18:1986–9. 24. palomba ca, banta tw. assessment essentials: planning, implementing, improving. 1st edition. san francisco, ca: jossey-bass; 1999. 25. jones ea. altered central serotoninergic neurotransmission: a potential mechanism for profound fatigue complicating chronic hepatitis c. med hypotheses 2001;57:133–4. [qualitative research in medicine & healthcare 2017; 1:6698] [page 79] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2022; 6:10717] [page 55] introduction in 2020, cancer was among the leading causes of death worldwide.1 according to the world health organization (2022), proper diagnosis is essential, and appropriate care considers the type of cancer, the goals of the person being treated, and their quality of life. social science research about cancer care tends to focus on interactions that occur between doctors and patients in clinical settings, such as the doctor’s office. communication scholar laura ellingson2 noted that cancer care involves many behind-the-scenes interactions among nurses, dietitians, social workers, genetic counselors, physician’s assistants, radiologists, and oncologists. while previous scholars2-4 have conducted research about healthcare teams, little research has focused on interactions that occur in one behind-the-scenes setting called a “tumor board” (also sometimes called a “tumor conference”). tumor board meetings convene several experts from the hospital setting or a sub-specialty of care (e.g., head and neck cancer or lung cancer) to discuss unique cancer cases. some tumor boards are interdisciplinary (e.g., similar disciplines, but different foci) and others are multidisciplinary (e.g., social workers, dieticians, oncologists), and their goals can vary. these clinicians consider patient cases focusing on a course of treatment. for example, an oncologist who specializes in caring for older adults may have a patient with an aggressive form of skin cancer, but tumor talk: a descriptive study of communication about tumor board meetings jillian a. tullis department of communication, university of san diego, ca, usa abstract tumor board meetings are behind-the-scenes settings where communication about health and strategizing about healthcare delivery take place. despite their wide use in hospitals and cancer centers, there is a dearth of information about the communication practices in this context. drawing upon six weeks of observations, this study investigated communication during tumor board meetings at a tertiary cancer center in the southeastern united states. findings revealed differences in communication among cancer specialties, with one tumor board consistently talking about the medical and non-medical elements of patient cases, while other specialties focused primarily on plans for treatment with little discussion about quality of life, economic, or caregiver support issues. the manuscript includes suggestions for modifying tumor conferences and opportunities for future research. correspondence: jillian a. tullis, department of communication, university of san diego, camino 126e, san diego, california 92107, usa tel.: 619.260.6897; fax: 619.260.4205 e-mail: jtullis@sandiego.edu key words: multidisciplinary; cancer; health. acknowledgements: i would like to acknowledge and thank the members of the tumor boards included in this study for their willingness to participate in this project. i do not take for granted the trust required to allow a researcher into this space. i would also like to thank the anonymous reviewers for their thoughtful feedback, which helped make this article better. thanks to my dear friends lori roscoe and emily ryalls for their support. and of course, my mom, jill, who is my biggest fan and most consistent reader of my work. conflict of interest: the author declares no conflict of interest. availability of data and materials: all data generated or analyzed during this study are included in this published article. ethics approval and consent to participate: the ethics committee of the university of north carolina at charlotte and of the cancer center where the study was conducted approved this study. the study is conformed with the helsinki declaration of 1964, as revised in 2013, concerning human and animal rights. all participants in this study signed a written informed consent form for participating in this study. informed consent: if applicable, written informed consent was obtained from a legally authorized representative(s) for anonymized patient information to be published in this article. received for publication: 4 july 2022. accepted for publication: 30 august 2022. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2022 licensee pagepress, italy qualitative research in medicine & healthcare 2022; 6:10717 doi:10.4081/qrmh.2022.10717 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. qualitative research in medicine & healthcare 2022; volume 6:10717 no nco mm er cia l u se on ly because her expertise centers on recommending chemotherapy or radiation treatment rather than surgery, she may seek the advice of the cutaneous (skin) tumor conference to determine if surgery is an option. experts in this patient’s type of cancer, or with the surgical skills, will discuss the feasibility of offering this patient surgery during a weekly tumor conference. i first became aware of tumor boards while attending these weekly meetings in an effort to recruit participants for a study of terminally ill head and neck cancer patients.5 our efforts to recruit using these meetings was largely unsuccessful. patients were not described as terminally ill by clinicians, and topics that would indicate declining health, such as futility of treatment or poor quality of life, were not discussed either. after and between these sessions, we started asking ourselves and each other what was the point of tumor boards. my curiosity sent me to the literature where i found tumor conferences had gone unexplored by social scientists despite an emphasis on the role of effective communication in cancer care, patientcentered care, and increased use of teams in healthcare. tumor board meetings attempt to address the knowledge or skills limitations, or gaps physicians may have due to specialization, with the goal of positively influencing patient care.6,7 these meetings also contribute to physician education, foster review of cancer management practices, and help keep practitioners informed about ongoing clinical trials which are especially relevant at cancer centers.6 tumor board meetings offer opportunities for cross-disciplinary communication believed to encourage best practices and outcomes for patients. judi mccaffrey, a board certified otolaryngology surgical oncologist, noted that these meetings should also aid in minimizing the “god complex” by providing a setting where peers can freely challenge treatment plans, especially if care may be futile (mccaffrey, 2011, personal communication). research on the efficacy of tumor conferences seems mixed. petty and vetto8 called into question the quality, function, and benefits of tumor board meetings, particularly as they relate to patient care. similarly, keating and colleagues9 indicated that tumor boards have little effect on the quality of care for cancer patients.10 one prospective study, however, focused on whether or not tumor boards influenced treatment plans and found the sessions had efficacy.11 in an umbrella review of tumor conferences, researchers found that these meetings were the best way to deliver complex cancer care;12 however, they went on to note that more research is needed to evaluate tumor boards’ role in other issues such as quality of life and patient satisfaction. wheless, mckinney, & zanation focused on the influence of communication on patients’ treatment plans, yet did not focus on quality or nature of talk itself as a mechanism for understanding cancer care or outcomes.11 while the literature is not definitive about the value and efficacy of tumor board, use of tumor boards persists. it is important to note, however, that these studies generally do not examine tumor boards in real time to investigate communication as it occurs, but instead, rely on chart reviews and survey data. according to ellingson, “documentation and explication of existing communication practices on [healthcare] teams will help generate strategies for improving communication within and outside of teams” (p. 7).3 weston and colleagues have also noted the benefits of observations in healthcare contexts, asserting that this method allows for understanding behaviors in context, while identifying opportunities for intervention and improvement.13 given the importance of team observation in a clinical setting, an observational study describing and analyzing communication during tumor conferences is an important first step for developing more specific research questions that can aid with additional qualitative research as well as hypothesis development. therefore, this study sought to address the following research questions: rq 1: what is the nature and content of communication during tumor board meetings? rq 2: to what extent does the communication during tumor board meetings include non-biomedical considerations? materials and methods to address the research questions, all site-specific specializations with tumor boards (approximately 10) at a tertiary cancer center in the southeastern united states were contacted about the study and invited to participate. i began observing and taking fieldnotes during tumor boards for three of the 10 specializations—breast, cutaneous (skin), and blood and bone marrow cancer—after receiving approval from both the cancer center’s ethics committee and my university’s institutional review board. during my initial attendance at a tumor board, i described my study, secured informed consent from participants, and allowed attendees to ask questions about the study’s goals and methods. i did not announce my attendance at subsequent meetings, but i did seek consent from attendees as needed. anyone who did not sign a consent form did not have their communication recorded in fieldnotes. no identifying information was included in any fieldnotes, and any agendas or patient lists that i received during the meetings were deposited in secured bins at the research site at the conclusion of each meeting. weekly tumor board meetings lasted, on average, ninety minutes to two hours (but some as long as four hours), and 15-50 patient cases (per tumor board) were discussed each week. cases presented during blood and bone marrow meetings were fewer (approximately 12 cases a week), but the meetings could last as long as four hours. breast and cutaneous tumor board meetings presented more patients (30-50 cases), but never lasted more than two hours. data collection lasted six weeks (42 hours), and 460 patient cases were reviewed during these sessions. [page 56] [qualitative research in medicine & healthcare 2022; 6:10717] article no nco mm er cia l u se on ly differences between the three tumor boards became evident early in the data collection process. the difference between blood and bone marrow tumor board and the breast and cutaneous meetings were evident after the first week of observations. throughout the data collection process, i asked myself why these differences existed and why they were so stark. i also discussed the differences with another communication scholar familiar with tumor board meetings as well as two physicians from the blood and bone marrow clinic. after the conclusion of data collection, when i felt confident additional observations would yield no new findings, i looked back at all of the data with the goal of identifying any categories or themes, adopting morse’s14 distinctions where categories consist of a collection of similar data and themes include an “essence” that runs through the data. analysis led to categories, but not themes. the findings include categories about the general content and structure of the meetings and about novel and difficult patients. i begin with a description of the physical meeting spaces and the structure of the meetings, followed by analysis of patterns regarding communication about patients. results distinctions between breast and cutaneous clinics and the blood and bone marrow clinics were noticeable during the first week of data collection. the quality of communication and content of discussions differed, and the physical meeting spaces, including the location and set up of the rooms, were markedly different as well. in what follows, i describe a typical gathering of the breast and cutaneous tumor boards, and then go on to discuss the content of communication about patients and their plans of care, followed by discussion of the blood and bone marrow tumor board meetings. physical space and layout of breast and cutaneous meetings the breast and skin cancer tumor boards meet in the in the same conference room with seating for approximately 60 people. at the front of the room is a screen, computer station, and a projector like that of a document camera. the room is dimly lit, bordering on dark, with small microphones hanging delicately from the ceiling. tables are set up in rows and at the tables sit people in scrubs and white lab coats: surgical oncologists, radiation oncologists, medical oncologists, and nurses. surgeons, who are also often the treating physicians, sit in the front of the room, filling the first two rows. medical and radiation oncologists sit behind them, followed by nurses. in the remaining rows are other specializations (e.g., a dietician, a genetic counselor, and a social worker) and visitors from other clinics wearing a mix of lab coats and business casual attire. on the left side of the room is a counter with coffee and bagels during the breast cancer tumor board, which meets tuesdays at 7:30 a.m., and pizza or sandwiches during the cutaneous meeting, which meets on wednesdays at noon. during some meetings, a pharmaceutical representative is positioned by the food and greets staff members as they help themselves to refreshments. structure of meetings during breast and cutaneous meetings all attendees receive a list of patients on the agenda, and the breast and cutaneous meetings begin with a pathology report from a radiologist. this includes viewing slides of the cancer cells providing information about a patient’s tumor based upon biopsies or resections. during this portion of the meeting, the radiologist provides information about the type of cancer, the stage (i-iv), and if the biopsy margins are clean, indicating whether or not the resection of the cancer was completed with surgery. occasionally, the treating physician, usually the surgical oncologist, will ask a clarifying question of the radiologist. the radiologist’s reports last approximately 20 minutes, and after the review is complete the radiologist leaves. from that point the agenda turns to multidisciplinary review. patient demographic information along with diagnosis and treatment (if started) is available on the agenda, and patient reviews follow in the order listed. patient information is not orally presented consistently; attendees follow these reports with occasional guidance from the director of the tumor board about which patient is up next for discussion. this portion of the meeting also includes screening of images, such as ct or pet scans. the display of a scan showing an advanced cancer will often prompt an audible response from the breast cancer tumor board attendees. similarly, during the cutaneous tumor board, photographic images of skin cancer lesions garnered audible gasps. outside of these reactions, the audience is quiet. while the image is on view, a report will begin. the following are examples of typical reports from the skin cancer meeting: patient was on hospice at 46 because he needed a kidney transplant, now has mets [metastatic] disease, refused biopsy. patient not a candidate for anesthesia [for biopsy of scalp lesion and some lesions around the eye]. patient has untreated lung cancer, 8cm mushroom tumor, recommend radiation therapy, will probably lose right eye, but patient has cataracts in left eye so he may not be able to see. the following is a typical report from breast cancer meeting: very healthy 93-year-old, lumpectomy only, don’t think she is appropriate for radiation. [qualitative research in medicine & healthcare 2022; 6:10717] [page 57] article no nco mm er cia l u se on ly these two tumor boards have very similar processes and approaches, and they stand in stark contrast to the blood and bone marrow tumor boards, as described below. physical space and layout of blood and bone marrow meetings blood and bone marrow tumor conferences occur on friday afternoons in a small and brightly lit conference room with one large table and executive style office chairs. the room does not have any visible technology or recording equipment. clinic staff all sit at the same table, with physicians often congregating near each other. unlike the other two tumor board meetings, my presence is more obvious in this space. the clinical staff wear business attire with no obvious signs that they are medical professionals. the participants greet each other and chat as they await the arrival of the other clinicians. an agenda is distributed, and reports occur as follows: 51, unrelated donor. day plus 55 [person is 55 days from donation]. there is some concern about the caregiver [who is the patient’s ex-wife] being burned out and not sleeping. [someone described her as a saint.] patient only there eight days, but the issue seems to be that she [the caregiver] was frustrated about meds, that the patient may not be taking them and was stressed, but she is totally committed to caring for the patient. patient is worsening. patient won’t make it to donation. 66, professor of theater from another state. he will need to find an outside donor because his brother has multiple health issues including diabetes and cannot donate. brother has an interesting history, was a sniper in the military and had been shot several times. [reporting physician goes on to talk more about the patient’s brother’s personal story.] 42, wife noticed swelling in the patient’s neck, and he had a tonsillectomy. surgeon discovered a tumor, and patient was referred to cancer center. he also has bone lesions which are unusual. there is a five-year survival rate with therapy and had a partial relapse. he’s got good family support, young, and no comorbidities, so they are going to pursue treatment. if another physician or nurse cared for one of the patients being reported on, they may also offer additional observations about family relations, a patient’s mood, or their medical status. as a result, some meetings lasted as long as four hours. novel and difficult patients detailed patient reports during a breast or cutaneous tumor board meeting similar to those described above from the blood and bone marrow tumor board were rare. a closer examination of fieldnotes found that reports during breast or cutaneous tumor boards that did include more personal details centered on what i have labeled as “novel” or “difficult” patients. reports about caregivers or home situations were not standard practice during breast and skin cancer tumor boards, but did occasionally occur under extreme, unusual, or difficult treatment scenarios. the following is an example from the cutaneous tumor board: axillary dissection of a six mm tumor with extra cap extension. the man weighs 350 lbs., had surgery, and is still draining 100 ccs of fluid a day. following this report, the treating physician and the radiation oncologist discuss the patient further, and i captured the nature of the conversation in a summary note: how he heals will determine whether or not he is able to receive radiation according to the rad onc [radiation oncologist]. the doctor described this as a “sad case” with social issues, saying that the patient lost his job, his house, and his wife all in the same year. patient has no insurance, and so there’s some question about what type of treatment he can receive. he also lives outside of the city proper, so treatment every other day may not be clear/possible. he can get peg [a type of treatment] without insurance. “he’s still working and has no insurance?” asks an audience member. “it’s america,” was the physician’s response. this is an example of a novel patient because the nonmedical facts of their case were introduced as being unique or atypical. commentary about the case followed. a second instance of when description was offered occurred during a breast tumor conference when the patient was difficult or non-compliant: patient is “31 going on 12.” she has a palpable mass, and surgery is recommended, but an mri is needed. i suggested she get off of birth control, and the patient said she didn’t think she could do that. so, i had to have my sex education talk with her. she wants to continue to party. she came back for the mri and reported that she couldn’t have it done because she thought she might be pregnant. i think she is putting off care. we can’t do re-incision with the type of surgery that was previously performed. patient has a family history with aunt [diagnosed] at the age of 41. frustration expressed by the reporting physician was palpable. following this report, a different physician suggested that this patient could stay on oral contraception [page 58] [qualitative research in medicine & healthcare 2022; 6:10717] article no nco mm er cia l u se on ly and that this would help determine her cycle for other scans and procedures. no other support or recommendations were offered from the members of the gallery. these examples address rq1 which focused on the nature and content of communication during tumor board meetings. communication during skin and breast cancer tumor boards largely focused on information exchange and the facts of the patients’ cases, from the opening reports by the radiologist to the treating physicians’ reports. blood and bone marrow conferences included sharing information as well, but with a greater focus on the whole patient and their support systems (physical, social, and emotional). this indicates that non-biomedical issues are a standard topic of discussion during blood and bone marrow meetings. the second research question, which asks about the extent of non-biomedical considerations, begins to come into partial focus. the above examples of novel or difficult patients from the breast and skin tumor boards were rare. they stand out from what are otherwise rote reports during breast and cutaneous tumor boards, which typically focus only on the medical facts of each case. the frequency and scope of talk about non-biomedical factors during these tumor boards center on those patients who present with social, financial, or emotional challenges to a physician’s recommended plan of care. these findings raise several questions about the goals of tumor boards, present avenues for modifying communication during these sessions, and contribute to our understanding of talk during these meetings, thus suggesting several fruitful opportunities for additional research. discussion the examples from the blood and bone marrow tumor board meetings, when compared to the breast and cutaneous conferences, illustrate a much greater emphasis on a patient’s story beyond the medical facts of their case. there are several possible explanations for these differences. blood and bone marrow cancer treatment is often inherently relational. live human donors are frequently needed for patients to receive transplants, and these donors are often family; therefore, physicians will discuss the presence, absence, or complications (such as identifying a donor), and patients’ related care. for instance, patients who receive a transplant are required to have a caregiver to assist them post-transplant, and some patients must remain hospitalized if they do not have a designated caregiver. when a patient does have a caregiver, that person must undergo training provided by the cancer center prior to the patient’s discharge. physicians described patients’ family relationships for the purpose of identifying donors and suitable caregivers, but also discussed the home environments of patients. to ensure a successful transplant, patients require a sterile environment and are encouraged to refrain from engaging in behaviors or environments that could compromise the success of the transplant. a patient with several cats, for example, was not able to return home for recovery following the transplant procedure, and patients who refused to quit smoking or refrain from alcohol were less likely to receive a transplant. the presence or absence of a caregiver and living situations were not mentioned with cutaneous and breast cancer patients even though their treatments are time consuming (e.g., multiple weeks of daily radiation), and related side effects are often debilitating. consider the patient above with the eight centimeter mushroom tumor who might lose their eye if they accept the recommended radiation therapy: no discussion ensued during the conference about how the team might problem solve or support the patient, including making a referral to other disciplines (e.g., social work or spiritual care) or services. more details about a patient were offered only when their case included some novel element or if the patient was resistant to the proposed plan of care. this is not to say that all patients who might be described as novel or non-compliant were highlighted during these meetings, but these elements were present when detailed reports occurred. information sharing over discussion this study used real-time observations of tumor conferences to describe and understand the nature of communication during these weekly meetings. information sharing among clinic staff to help fellow practitioners—should they encounter patients in their clinics or on rounds—is a key objective of tumor board meetings. another objective is to ensure that physicians are not overtreating their patients, and only recently have cancer centers experimented with tumor boards with the explicit focus on a significant barrier to care: a patient’s financial well-being.15 little to no discussion about overtreating, however, was observed during this study. the majority of tumor board meetings (across all specialties) were, however, dedicated to information sharing. the quality or nature of the information depended upon the cancer specialty. in cutaneous and breast cancer tumor boards, discussion focused primarily on the facts of the case, most of which were already described in the patient list/agenda. talk centered on answering the question “can we do this treatment?” rather than “should we do this treatment?” when the treating physicians explicitly asked for input from their peers, they presented their plan for care and then looked to their peers to affirm the plan. this mechanism of reporting did not facilitate a discussion, but rather appeared to lead to passive agreement. put another way, the format would require a member of the clinic staff to openly and publicly challenge the plan of care presented by their colleague. and since the presentations of patients only focused on the medical facts of the case, there was limited information for others in the clinic to work with. as a result, a treating physician’s request for input about a course of treatment rarely triggered discussion, debate, or dissent. [qualitative research in medicine & healthcare 2022; 6:10717] [page 59] article no nco mm er cia l u se on ly medical oncologists, whose primary mode of care is chemotherapy, and radiation oncologists who offer radiation treatment, would take these moments to suggest the possibility of providing their respective treatment modalities. interestingly, despite the presence of nurses, dieticians, and social workers, these members of the board did not automatically report on cases as one might expect on a multidisciplinary team, unless they were invited to contribute, as was the case when a genetic counselor on the breast cancer tumor board was called on twice over six weeks to offer information about patient cases. similarly, nurses would provide a detail from a patient’s file only upon request from the physician they worked with. it thus appeared that the non-physician staff were in attendance primarily as passive participants to receive information. although nurses were observed working on laptops during tumor board, the nature of that work was not clear or if it was related to tumor board. in contrast, the blood and bone marrow tumor board provided information about patients beyond the medical facts of their cases. issues of a patient’s economic status, home environment, and caregiver support were discussed with more consistency. there was also more discussion among attendees at the blood and bone marrow meetings. this is most evident in the length of the meetings where members discussed fewer patients over a longer period of time. while the type of treatment explicitly warrants attention to such issues, the same issues are also present among patients with other sites or types of cancer. in other words, the illness experience is not limited to diagnosis or treatment, but includes quality of life issues, coping, identity changes, stigma, financial burdens, and time constraints, but this seemed to go unacknowledged in some tumor board meetings despite the relevance to health outcomes.11 of course, based upon the tumor board alone it is difficult to know if or how treating physicians incorporate non-medical issues into their medical practice and delivery of care. the lack of talk about these issues to all clinic staff during tumor board meetings, however, implicitly equates the patients with their illness rather than recognizing them as a whole person. the use of photos, images, and scans since multidisciplinary review is one reason for presenting a patient’s case at tumor boards, more frequent presentations of atypical cases were expected. this data, however, suggests that such cases may be infrequent. for example, scans and photographs can contribute to understanding a patient as novel. while the goal of tumor boards is to contribute to the ongoing education of team members, the use of photos in particularly unique or rare cases makes sense. the use of these images only when they are exceptions raises questions about the ability of photographs to humanize patients or garner compassion. if a novel or difficult patient case were accompanied by an image or scan, they could run the risk of stigmatizing or degrading a patient, especially if the patient case is only presented with medical facts. content and quality of information the content and quality of communication during blood and bone marrow cancer tumor boards stands in stark contrast to the breast and cutaneous tumor boards. the quality of information was richer and more narrativebased as the treating physicians described patients’ diagnoses alongside information about their social, familial, and financial status. a patient report that failed to include this type of non-biomedical information was the exception and frequently occurred when a patient was close to discharge or would not receive treatment. there are several possible explanations for why these differences exist. for instance, in addition to the treatment modality, the number of patients who undergo review during a blood and bone marrow tumor board is often less than half of the number of patients discussed during the breast and cutaneous meetings. in contrast, discussing anything more than biomedical issues during breast and cutaneous tumor boards could be prohibitively time consuming. much of the diagnostic and treatment information about a patient’s case is already available on the list of patients scheduled for discussion. rather than repeating this information, foregrounding quality of life issues or the reasons a patient might resist or fail to comply with recommended treatment regiments could better leverage the expertise of the multidisciplinary team. room layout clinics invested in the contributions of all disciplines should consider the set-up of the physical space and format of the meeting to invite participation. a different member of the clinic, such a nurse, social worker, or genetic counselor who has interacted with a patient could initiate the report followed by the treating physician. changes could also be made to the seating arrangement at cutaneous and breast cancer conferences to reduce the perception of power differences and facilitate discussion across disciplines or ranks. ultimately, facilitating communication across the members of the clinic can help fully realize the multidisciplinary purpose of the tumor board. limitations and future research this study was a first step in describing communication during tumor board meetings; however, the number of tumor boards and a single research site are limitations. a larger number of tumor conferences, especially at more than one cancer center, would further clarify if the communication patterns described here is indicative of the culture at this cancer center, per se, or representative of tumor board more generally. another challenge relates to the [page 60] [qualitative research in medicine & healthcare 2022; 6:10717] article no nco mm er cia l u se on ly method. transcripts of these meetings, rather than fieldnotes, would allow for more precise analysis of communication, including such factors as language use and turn taking. although this study did not set out to prove what type of communication might influence patient care and outcomes, it does suggest that a study which specifically examines such communication could prove fruitful by helping us understand: what types of appeals foster treatment changes? what is the outcome of patient care when issues of medical futility are raised by peers? and should questions about futility be standardized? in a study about the presence of a family caregivers at interdisciplinary hospice team meetings, researchers found the nature and content of communication did in fact change in ways that could be relevant for tumor board operation.16 would the presence of the patient or their representative, such a family member or friend, shift the discussion? does the nature of communication change when attendees see patients’ faces? what other socioemotional issues important to patients should be considered during meetings? how would communication change if the physical space and seating at tumor boards were flipped? would more disciplines participate if they were responsible for reporting about patients first? how would communication change if the driving question during tumor boards centered on patients’ goals for care rather than the feasibility of care? more study of communication during these meetings would likely generate other questions about healthcare teams in general and cancer care specifically. conclusions according to blayney,10 the long history of the tumor board suggests the sessions will not end any time soon. as such, tumor boards will continue to be a fruitful site for study by qualitative researchers who want to understand healthcare teams’ role in patient care. more specifically, some cancer centers are beginning to recognize the potential value of considering non-medical issues, such as financial challenges, during tumor boards.15 while finances are not healthcare, as a social determinant of health, they do have a significant influence on a patient’s ability to access care and follow through on the treatment plans that are carefully crafted by oncologists. this new focus is particularly important if, as previous research has indicated, these meetings have little positive influence on patient outcomes. altering the goals and improving tumor board practice is important if clinicians want to maximize care. this study described communication during tumor board conferences to better understand the form and function of talk and offers suggestions for future study. great strides have been made in treating cancer, but more work can be done towards caring for the whole person. tumor boards are one site for positively contributing to comprehensive care. references 1. world health organization. cancer. 2022. available from: http://www.who.int/mediacentre/factsheets/fs297/en/ 2. ellingson l. interdisciplinary health care teamwork in the clinical backstage. j appl comm res 2003;31:93-117. 3. ellingson l. communicating in the clinic: negotiating frontstage and backstage teamwork. creskill, nj: hampton pres; 2005. 4. ragan, sl wittenberg-lyles, em goldsmith, j sanchezreilly s. communication as comfort: multiple voices in palliative care. new york: routledge; 2008. 5. roscoe la, tullis ja, reich rr, mccaffrey jc. beyond good intentions and patient perceptions: competing definitions of effective communication in head and neck cancer care at the end of life. health comm 2013;28:183-92. 6. gross ge. the role of tumor board in a community hospital. ca cancer j clin 1987;327;88-92. 7. stevenson mm, irwin t, lowry t, et al. development of a virtual multidisciplinary lung cancer tumor board in a community setting. j oncol pract 2013;9:e77-e80. 8. petty, jk vetto jt. beyond doughnuts: tumor board recommendations influence patient care. j cancer educ 2002;17: 97-100. 9. keating, nl, landrum, mb, lamont, eb, et al. tumor boards and the quality of cancer care. j natl cancer inst 2013;105:113-21. 10. blayney dw. tumor boards (team huddles) aren't enough to reach the goal. j natl cancer inst 2013;105:82-4. 11. wheless sa, mckinney ka, zanation am. a prospective study of the clinical impact of a multidisciplinary head and neck tumor board. otolaryngol head neck surg 2010;143: 650-4. 12. specchia ml, frisicale em, carini e, et al. the impact of tumor board on cancer care: evidence from an umbrella review. bmc health serv res 2020;20:73. 13. weston le, krein s, harrod m. using observation to better understand the healthcare context. qual res med healthcare 2022;5:9821. 14. morse, jm. confusing categories and themes. qual health res 2008;18:727-8. 15. raghavan d, keith na, warden hr, et al. levine cancer institute financial toxicity tumor board: a potential solution to an emerging problem. jco oncology practice 2021;17:e1433-9. 16. wittenberg-lyles e, oliver dp, kruse rl, et al. family caregiver participation in hospice interdisciplinary team meetings: how does it affect the nature and content of communication? health communication 2013;28:110-8. [qualitative research in medicine & healthcare 2022; 6:10717] [page 61] article no nco mm er cia l u se on ly layout 1 introduction in december 2011, our large urban academic medical center established a specialized, outpatient practice transitional care clinic, the northwestern medicine group transitional care (nmg-tc), devoted to post-hospital care for patients discharged from the emergency department (ed), observation care or inpatient units.1 inpatient hospital clinicians were advised to refer patients to the nmg-tc who lacked a regular source of primary care, were uninsured or who seemed overwhelmed by a new, complex or worsening medical condition. the nmg-tc’s mission is to achieve a safe and practical transition to primary care medical homes, usually at federally qualified health center (fqhc) community partners. the nmgtc is located across the street from the hospital, and all appointments are from hospital referrals. transitional care is a relatively new medical sub-discipline, and is growing nation-wide as hospitals become interested in savings as well as revenues and are increasingly willing to deploy population-based approaches to care coordination for high risk, high cost patients. table 1 describes the nmg-tc patient population (n=4,169) through 2017 based on data from each patients’ first nmg-tc visit. the nmg-tc primarily sees younger medicaid and uninsured patients who don’t have a usual source of care or a primary care physician, with a large and growing proportion with mental health and substance use diagnoses. a randomized controlled trial was recently completed and will compare post-referral hospital use for several hundred patients electronically selected to be referred or not referred to the nmg-tc (clinicaltrials.gov identifier: nct03066492). a recently published observational study of over 3,300 patients seen between 2011 and 2016 found a declining proportion of nmg-tc patients with any 90day post-nmg-tc visit hospital use, with an approximate a qualitative study of urban hospital transitional care joe feinglass,1 samuel wein,2 caroline teter,3 christine schaeffer,3 angela rogers3 1division of general internal medicine and geriatrics, northwestern university feinberg school of medicine; 2behavioral research associate, lurie children’s hospital; 3northwestern medicine group transitional care, chicago, illinois, usa abstract this study is part of a mixed methods evaluation of a large urban medical center transitional care practice (nmg-tc). the nmg-tc provides integrated physical and behavioral health care for high need patients referred from the hospital emergency department or inpatient units and who lack a usual source of primary care. the study was designed for internal quality improvement and sought to evaluate staff perceptions of successful transitions for their medically and socially complex patients, and alternatively, the obstacles most likely to negatively impact patient outcomes. all 16 nmg-tc patient care staff were interviewed in a collaborative effort to produce empowered testimony that might go beyond expected clinical narratives. the interview schedule included questions on risk stratification, integrated mental health care, provider to provider handoffs, and how staff deal with key social determinates of patients’ health. the constant comparative method was used to deductively derive themes reflecting key domains of transitional care practice. seven themes emerged: i) the need to quickly assess patient complexity; ii) emphasizing caring for major mental health and substance use issues; iii) obstacles to care for uninsured, often undocumented patients; iv) the intractability of homelessness; v) expertise in advancing patients’ health literacy, engagement and activation; vi) fragmented handoffs from hospital care and vii) to primary care in the community. respondent stories emphasized methods of nurturing patients’ self-efficacy in a very challenging urban health environment. findings will be used to conceptualize pragmatic, potentially high-impact transitional care quality improvement initiatives capable of better addressing frequent hospital use. correspondence: joe feinglass, division of general internal medicine and geriatrics, northwestern university feinberg school of medicine, 750 n. lakeshore dr. 10th floor, chicago, illinois 60611, usa. tel.: 312.503.6443 – fax: 312.503.2755. e-mail: j-feinglass@northwestern.edu key words: transitional care; behavioral health care; hospital use; patient complexity. contributions: the authors contributed equally. conflict of interest: the authors declare no potential conflict of interest. funding: the study was funded in part by a grant from the otho s.a. sprague memorial institute. received for publication: 5 december 2017. revision received: 25 april 2018. accepted for publication: 25 april 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright j. feinglass et al., 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:94-100 doi:10.4081/qrmh.2018.7216 [page 94] [qualitative research in medicine & healthcare 2018; 2:7216] qualitative research in medicine & healthcare 2018; volume 2:94-100 no nco mm er cia l u se on ly 35% reduction in the likelihood of any 90-day hospital use between 2011-2012 and 2015-2016.2 this decline occurred while the nmg-tc gained increased resources, including integrated mental health care services, many patients gained medicaid or health exchange insurance coverage through the affordable care act, and an increasingly experienced nmg-tc staff developed stronger and more reliable ties with community partners. this investigation, based on 16 in depth nmg-tc staff interviews in 2016, invited staff to construct narratives about their experiences with their patients’ ubiquitous physical, mental and behavioral health challenges. the study was designed by university researchers and staff investigators seeking insights into potential quality of care improvement initiatives. the goal was to collaboratively produce authentic, actively subjective accounts animated by both the joys and deep frustrations of transition care practice. materials and methods the interview schedule was designed by nmg-tc clinicians as part of an ongoing, mixed methods evaluation research program. questions focused on issues prospectively deemed worthy of potential care coordination interventions and with significant quality improvement implications, in particular, the interviews attempted to collaboratively define processing interchanges, or the key moments in the flow of patient care that are most likely to determine patient outcomes.3 study transcription and analysis was performed independently by the academic health services researchers. all 16 nmg-tc staff were then interviewed and audiotaped by an anthropology-trained research assistant. interviews were transcribed verbatim. the 12-item interview schedule was based on sensitizing concepts4 that frame staff interactions with patients and allow reflexive coding, including questions about mental health treatment, handoffs between the hospital and primary care or behavioral health medical homes, patient complexity, social service needs assessment and post-transition care follow-up. interviews were conducted with the general internist and founding medical director, a clinical psychologist, a nurse practitioner, a physician assistant, a registered nurse, two psychiatrists, a clinical psychologist, a clinical pharmacist and three nmg-tc pharmacy residents, a licensed clinical social worker, the operations coordinator, and the three bachelor-degree level health advocates who serve as community health workers. to protect confidentiality, all unique professionals were labeled as clinical provider below. interviews lasted approximately 40 minutes. a constant comparative method was used to derive and code themes with text selection length methods advocated by kuraski.5 rather than marking fixed, pre-determined idea units, study themes were marked as longer free flowing text segments. after discussing theme definitions, the non-nmg-tc investigators (jf, sw) established interrater reliability for deductive coding of themes at a kappa>0.90. the study was ruled exempt by the northwestern university institutional review board and all participants provided verbal informed consent before being interviewed. results interview responses were coded into seven themes, representing how respondents experienced distinct domains of transitional care practice, and their assessments of how each domain was associated with transition outcomes. the need for rapid risk stratification and patient complexity assessment respondents universally saw their role as providing psychological support and counseling to patients who were all dealing with serious, acute illness that was profoundly disrupting their lives. respondent narratives emphasized the need to initially categorize complexity so as to quickly assess what level of support services are likely to be required for an ultimately successful transition. they were constantly grappling with how to analyze and break through sometimes chaotic and emotional patient presentations, and which responses seemed to have the highest yield for patient outcomes. i think these patients are more complex medically and [qualitative research in medicine & healthcare 2018; 2:7216] [page 95] article table 1. characteristics of 4169 northwestern medicine group transitional care (nmg-tc) clinic patients, december, 2011-september, 2017. patient characteristics at first nmg-tc visit percent male 51.8 female 48.2 race and ethnicity non-hispanic white 21.4 non-hispanic black 45.4 hispanic 16.8 other or unknown race and ethnicity 16.4 age 18-30 23.2 31-49 37.0 50-65 31.7 65+ 8.1 insurance private/other 19.0 medicaid 28.0 uninsured 45.0 medicare (including disability) 8.0 any icd coded psychiatric diagnosis 15.7 icd, international classification of diseases. no nco mm er cia l u se on ly socially, and mental health wise, than any other patients that i’ve ever taken care of. and i’ve worked internationally, in war zones. i’ve worked at cook county hospital. i worked at fqhcs in rockford and in chicago…this is by far the most complex group that i’ve ever managed. there’s chaos in their lives. they have a new medical diagnosis that’s either worsened or severe or deadly or something, on top of a complex psychosocial situation. if patients could handle their new cancer diagnosis, they wouldn’t be here. if they could handle their new heart failure and new heart attack, new diabetes, new whatever, they wouldn’t be here. (clinical provider) …we see a lot of schizophrenic patients. disorganized, paranoid patients, who are for the most part homeless, and lost to care, because of their illness. (clinical provider) i feel like poverty is almost always playing a role… lack of social support, lack of resources, and not having a great skill set for managing really, really tough situations… for lack of a better word, just lots of stress. (clinical provider) the nmg-tc social worker described a formal method to stratify patients’ baseline risk, to predict each patients’ transitional care resources needed at the time of a first visit. …we implemented a risk-stratified case management protocol that (measures) patient activation (with) twelve questions about the patient’s psychosocial functioning… and look at the patient’s prior utilization and complexity of illness, and assign them a risk of readmission score. if a patient is uninsured, has a chronic illness and has been lost to care for a year or so, if the patient’s like over fortyfive and hasn’t gotten their preventive screenings, if transportation is a big barrier…the risk stratification score (is) color-coded. so it’s going from cool to hot. green, yellow, orange, red. red patients are the most complex. we call them our health advocate patients. homeless patients… and patients with cancer are automatically assigned to the red group. (clinical provider) nmg-tc providers described evolving care coordination risk models that are perceived to capture psychosocial complexity. these risk assessment techniques provided pragmatic strategies for identifying which patients benefit most from more intensive care including multiple-nmgtc visits or referrals, assignment of health advocates for various tasks such as accompanying patients to appointments, and arranging for hospital specialty care. challenges to mental health and substance use care staff almost universally emphasized that their patients had huge mental health challenges, whether they had specific psychiatric or substance use conditions or were just in shock from a major physical health decline. staff frequently noted the advantages of providing integrated mental and physical health care, including access to an internal medicine trained psychiatrist who can manage all aspects of conditions like chronic pain, fibromyalgia, and depression. .…probably the majority of people that show up in our clinic have a behavioral health need. some kind of reaction to an acute trauma of being shot. acutely diagnosed with this new heart failure. “i went into the hospital because i was having some chest pain. i come out of the hospital after having a stent. i’m on five medicines, and now i have to retire.” huge, huge issues…they’re deer in the headlights i think when they first come in. (clinical provider) a lot of patients … have had a history of early childhood trauma or poverty or homelessness, often don’t always have the best coping skills… (the psychotherapists) both have backgrounds in trauma, which we see a lot of. (clinical provider) an example would be somebody who’s got a somatoform disorder, where they believe that something is wrong with their body…sort of the vocabulary that they are using to express their distress. that sort of person can be seen here by a psychiatrist…and they wouldn’t rebel against the idea of seeing a psychiatrist. however, if we said to that person, “i’m going to make you an appointment at a mental health clinic,” that starts to take them out of their comfort zone. (psychiatrist) …you try and figure out what’s going to help this person. is it medications? or is it more of a situational factor, situational trigger, that’s causing the symptoms, and whether you can kind of work with them more one-on-one and just kind of help them get through a crisis, versus it being very chronic and all-enveloping, and you can tell that they have not been functioning for a long time. (psychiatrist) clinic staff often described addressing somatization disorders, the stigma or lack of patient confidence in the effectiveness of mental health treatment, and poor coping skills associated with anxiety disorders. so the patient might present to the emergency room with chief complaint of feeling blood is dripping down his brain, and there’s parasites in his stomach…saying that somebody can help you address some of the stress, or some of the things that are going on in your life, without saying, “you have a mental illness,” gets them more willing to engage….and a lot of times, this is severe mental illness. this is schizophrenia, without having any insight, or bipolar disorder. or it’s somebody who has been strong for so long, battling depression or anxiety, and would never go to see a therapist on their own unless a medical provider suggested it. (clinical provider) i’ve met with patients who don’t have a psych diagnosis, but there is some paranoia, hallucinations, delusions, grandiose…they leave wherever they were living and then just make this impulse decision to move to chicago. i’ve had patients who have moved from michigan and wisconsin, patients have no support, housing. (health advocate) …both our psychiatrist and the therapists definitely do counseling around cutting back, cutting out, whether it’s for opioid addiction or alcohol dependence…(but) addiction is such a devastating disease that i wish i could [page 96] [qualitative research in medicine & healthcare 2018; 2:7216] article no nco mm er cia l u se on ly say that we saw wonderful outcomes. it’s not that often that we do. (clinical provider) respondents often noted problems with the availability and effectiveness of alcohol and opioid dependence treatment in chicago. in particular, staff had to constantly deal with the lack of access to suboxone treatment for heroin users without private insurance, the lack of community mental health homes for homeless patients in need of intensive case management, and extremely long, frustrating social and behavioral services waiting lists, which one provider described as resulting in patients often changing their mind about behavioral health referrals. obstacles to care for uninsured and undocumented patients a large proportion of nmg-tc patients, even after affordable care act insurance expansions, remain uninsured, including many who still cannot afford health exchange plans regardless of the subsidies available. several staff described the extreme stress of undocumented patients facing complex, burdensome paperwork for free care and the pervasive fear of deportation. i’ve had patients where i literally was begging them in the office, “you need to go to the emergency room. this is super dangerous. your blood pressure is astronomically high. you’re at very, very high risk for stroke or a seizure. we really need to get you to go to the hospital now, to safely lower your blood pressure. it’s not safe for you to go home now. you could die.” and he really, almost refused. it took about a half an hour to get him to finally accept, and one of the biggest things was, because he’s uninsured, he was just worried about a huge hospital bill. i think that language plays into that, with our undocumented patients. (clinical provider) nmg-tc staff assist uninsured patients in applying for charity care, prescription assistance, or assist them in applying for insurance coverage. insurance restrictions described included medicaid managed care plans that do not cover post-hospitalization transitional care or prior prescriptions just received from inpatient specialists without additional authorizations which may take up to a week or more for approval. medicaid managed care plans should cover transitional care. so it makes much more sense to, ok this patient had a heart failure exacerbation, and needs to follow up with cardiology. to be able to even just cover for three months for them to be able to be seen, to kind of finish that work up, or to make sure they’re connected, i feel like makes so much more sense, than referring them to an entirely new health system… and then it’s just barriers in care and they often fall through the cracks.” (clinical provider) intractable housing uncertainty and social use of the emergency department a primary focus of the nmg-tc health advocates is to assist patients with social needs, including transportation and social services. multiple respondents cited housing as the most frequent unmet need. …patients frequently utilize the ed because it is the only place where they feel listened to and cared for, or perhaps the only place where they can rest in a warm bed for a few hours.(clinical provider) … (some of our) patients are african american men who have been in jail, and they’re not even qualified to go to some of these places. or the lists don’t pertain to them. i know we have one patient, he’s eighty-one… he’s getting progressively worse, because of his heart failure. he just …needs a place to stay. we’ve managed to keep him out of the hospital …for at least a year. and just recently he was admitted, because of a heart failure exacerbation. and that’s because he doesn’t have housing… i do a lot of wound treatment here too. and a lot of the wounds are from patients who are homeless, who are obese, who have psych issues, personality disorders. who have nowhere to rest.” (clinical provider) several staff discussed homeless patients reporting that were encouraged by other shelter residents to smoke and drink, were constantly losing their medications, and described the difficulties of psychiatric patients who required medication documentation to get housing. we’ve seen patients who went from homeless for ten years, sleeping on the sidewalk, to then getting insurance, getting disability, getting housing….changing the trajectory of their lives that has been the most significant thing that i’ve seen. when you’re trying to talk to your patient who is diabetic, on insulin, has schizophrenia, not on any psych meds, and homeless, trying to talk to him about diet and where they’re keeping their insulin and checking their sugar, and everything like that, and then it’s like, “oh, no, i have all this leg swelling.” without housing, it’s so difficult to really make a dent in any of those… we’ve had a patient who, she’s schizoaffective bipolar type, and she has been chronically homeless with intermittent housing. we saw her for several years. but at one point, she was at least stable in an sro (single room occupancy rental). she wasn’t going to the er a gazillion times. and then, maybe the county sheriffs were going to close down the sro. and since then, just literally (she) will go from like er to er to er to er. (clinical provider) several nmg-tc staff advocated for an ed-based housing program for patients with mental illness who are homeless. these were the patients most often lost to follow-up care, with no ability to manage complex symptoms. the clinic kept some homeless patients’ birth certificates in their files to assist with medicaid annual recertifications. expertise in enhancing health literacy, engagement and activation multiple providers described their case management approach as meeting each (patient) where they are at. [qualitative research in medicine & healthcare 2018; 2:7216] [page 97] article no nco mm er cia l u se on ly …we do our best to really try to treat patients with respect and kindness and dignity. and for a lot of patients who have been on the outskirts of care for a long time, maybe they haven’t seen a doctor in twenty years, and then they go because of hip pain, and they found out they have metastatic prostate cancer. and don’t know how to navigate the health system very well, or advocate for themselves very well. so being able to…be present with them…to say, “we have a health advocate who can help you get insurance” or “we have someone who can go to an appointment with you” or, “we have a therapist here, and it sounds like you’re having a really tough time, and that sounds like a really normal reaction to everything you’re going through.”…and to do so kind of quickly, rather than, “oh, i’ll put in a referral for the therapist to, maybe you’ll get an appointment in like two months.”… to provide them a little sense of hope too, that they’re not in this alone. (clinical provider) many staff respondents defined their transitional care mission as addressing low health literacy and getting their patients to become active and engaged in their care. reconciling medication regimens for these recently discharged patients was described as a crucial first step. i’ve educated on what a1c is with diabetes, or what an inr is with warfarin, so that they can understand when they’re reading results or when their physicians tell them what each of those things means… we kind of don’t use medical terminology if we don’t have to, just so it’s in layman terms. frequency, when they’re taking it each day. is this morning, noon, after dinner, night time, like “take this with a meal”…we give out pillboxes to patients… that they can fill themselves. (pharmacy resident) like we had a gentleman who was injecting insulin into his legs when he got charley horses, because he thought that the insulin would help with his charley horse. …this is a patient with mental health comorbidities, so trying to explain to him …like, “your insulin is for your blood sugar, and this is where you inject it, and this is how often you inject it.” and then he learned that… (another) patient that has uncontrolled diabetes, and was admitted to the hospital, with blood sugar…in the five hundreds somewhere. i provided …resources…what does a typical plate look like? how should you divide that up? and what types of foods should you be eating and should you avoid? …it kind of opened his eyes a little bit, like, “wait a second, maybe part of this is my responsibility, and that i have to take this on.” (pharmacy resident) fragmented handoffs: to transition care from hospital care respondents frequently described challenges to improving the show rate of patients referred to transition care from the hospital. as the nmg-tc medical director notes below, hospital referral protocols remain informal and can potentially perpetuate inefficient care: there’s not a formal handoff (from the hospital). sometimes people will call if they have a really troublesome patient (but) not that often. sometimes the discharge summary is kind of not super helpful. you end up having to read six or eight different specialist notes… and so a lot of times, something (gets) picked up after they get here, and it has not been documented. so like no one ever noted the patient was having florid psychosis…(clinical provider) i could see how someone who is uninsured and was kind of forced to go into the emergency room because of whatever crisis that they’re in...would be very reluctant to come back, when they’re concerned about paying for services...(a patient) in there for intoxication or drug overdose, …that person most likely is going to be scared to come back, and they don’t show. (health advocate) several respondents described the value of health advocates who can walk a patient over to the nmg-tc. …we’ll (sometimes) go meet someone in the emergency department or inpatient unit... we call it a warm handoff. …we think that’s been a really effective thing for some of these frequent users of hospital resources. (clinical provider) fragmented handoffs: from transition care: to primary care in the community a majority of respondents echoed the clinic’s mantra of stabilizing and then launching patients to on-going primary care as the core mission of the nmg-tc, with a particular sensitivity to mental health issues. for the patients with mental illness, usually we plan a series of visits around the transition… we talk about what’s going to happen. if the patient is working with a health advocate, we will have them go to that visit with the health advocate…, if we’re worried about their ability to transition, we will do what we call a soft launch, …another visit scheduled back with us a week later…and if it didn’t stick, they didn’t go, we can have another chance. (clinical provider) …we’re referring people to places where logistically it works for them, in terms of where they live. i’ll sometimes reach out to a provider that i anticipate eventually seeing a patient who i have seen. …– they give me consent to do it…so that when they come for that first visit, they’re actually also meeting behavioral health on that same visit…(clinical provider) nmg-tc staff constantly juggle the clinical and financial disconnects between the academic medical center and fqhc care: a lot of times, it’s the simplest things that fall through, like for example, a patient is doing well with heart failure, on a set regimen. and then they launch to the community and the provider orders...medicine that’s not a four dollar generic. it’s $165…because it got switched to the brand name or whatever. and then the patient just doesn’t fill it. and then it’s just the beginning of a slippery slope where the disease gets worse, … and then they get admitted, and [page 98] [qualitative research in medicine & healthcare 2018; 2:7216] article no nco mm er cia l u se on ly then we end up with them again. a lot of times, the damage is permanent. (clinical provider) several respondents also described the fine line between empowering versus enabling patients as potentially undermining subsequent care in the community: we see patients often who are half hour late, one hour late, two hours late. walk in. we try to do our best to accommodate. but the reality is like, if you’re fifteen minutes late, you’re often not seen at other clinics. and probably the receptionists are not making you oatmeal or getting you a bus card or vouchering your medications. (clinical provider) the ease of the clinic is also a detriment. we give them food. clothes if they need it. everyone here is so sweet. it’s our demise if we don’t start setting these boundaries. so, a lot of times, i feel like we don’t do the very best job at discharging some of our patients. the ones who are stronger, they can manage. the ones who are not, they don’t have family, they don’t understand their disease, they are very timid and shy…or they just don’t care, those people are the ones who we see again. (clinical provider) i actually had a patient this morning actually cry because she did not want to go to another clinic. she wanted to stay here with us. so i had to explain to her that we don’t have any primary care physicians here, and the importance of her having a primary care physician. (health advocate) almost all respondents lamented the lack of a unified medical record and other follow-up resources, and were unsure of the actual stick rate of discharged nmg-tc patients at fqhc medical homes, a rate that includes some patients lost to follow-up between nmg-tc visits and thus never discharged to care in the community. discussion kangovi et al.6 interviewed 65 low socioeconomic status patients and described perceptions of their challenges during post-hospital transitions. themes identified were: i) powerlessness during hospitalization due to illness and socioeconomic factors often related to insurance; ii) misalignment of patient and care team goals as exemplified by a homeless patient being told she needs to weigh herself daily; iii) housing instability leading to ignoring discharge instructions; iv) inability to afford medications or co-pays for follow up visits; v) abandonment by social supports and the health care system after discharge, often associated with failure to communicate questions or problems with medications to hospital providers; vi) patients feeling doomed to fail and deciding not to try. other studies, also overlapping respondent perceptions from this study, describe stress, lack of transportation, and lack of affordable home care as leading to frequent emergency department (ed) visits and hospitalizations.7-9 how well does transitional care address these concerns? transitional mental health brief intervention programs have been found to successfully prevent psychiatric readmissions and repeat ed use in the us and in britain.10-14 however, the research evidence about the longer term clinical and psychological impact of brief transitional care interventions remains weak.15 revenue focused hospital administrators often continue to see transitional care as a costly, high touch service lacking significant fee-for-service reimbursement. these study findings suggest otherwise, with respondents uniformly confident about the potential of multidisciplinary, integrated transitional care to bolster patients’ self-efficacy in dealing with critical illness and multi-morbidity. because the study was conducted in the workplace and was explicitly a quality improvement exercise, it is possible that respondents’ voices echoed the institutional story and mission of the clinic, rather than their own authentic reflections. staff authors were blinded to individual respondent identities for the manuscript quotes above but could likely infer who said what. however, as many of the quotes above demonstrate, respondents were consistently able to openly discuss their frustrations with transition care practice, the fragmentation and barriers to care they experienced, and the frequently poor outcomes experienced by their patients. while many hospital transitional care programs focus primarily on preventing readmissions of older, frail, homebound or end of life patients,16-19 the nmg-tc was designed to serve younger, uninsured or underinsured patients with psychosocial and economic barriers to managing their health. the nmg-tc exists in an environment (downtown chicago) where few if any mental health professionals are willing to see indigent patients. prior to the nmg-tc, hospital providers were often providing discharged patients with no regular primary care doctor an unreliable fqhc appointment phone number, hoping for the best. conclusions using interviews in quality improvement these interviews provide a valuable perspective on how highly motivated safety net providers cope with enduring health disparities in access and fragmentation of care while simultaneously struggling with powerful social determinants of urban health. the study interview process embodied a collaborative spirit in which the interviewer’s questions were informed by staff investigators, who then engaged staff respondents in creatively constructing thematic narratives. the conversational interview process created multiple layers of meaning in an interactive process. this study demonstrates why interviews are often the best, most efficient, and most meaningful way to shed light on actionable healthcare delivery system change and innovation.20,21 the study documents life on the urban safety-net front [qualitative research in medicine & healthcare 2018; 2:7216] [page 99] article no nco mm er cia l u se on ly lines from the standpoint of providers who see very complex and vulnerable patients. study findings are being used to design multiple quality improvement interventions across the domains described above. examples of current efforts include improved patient risk stratification models that can better prioritize use of clinic personnel and timely care coordination, creation of new mental health homes for patients willing to attend appointments at the medical center, exploring an ed-based housing program in conjunction with community-based housing organizations, designing an electronic master patient index to track appointment outcomes for patients referred to fqhcs, and working with residents and ed physicians to improve the hospital referral process and nmg-tc show rate. in the long run, to dramatically improve outcomes for our highest risk, highest cost patients, there will need to be new transitional care payment mechanisms22 and much better integration of home and community-based social services and supports.23,24 while these interviews are stories from a single organization, they illustrate many of the challenges common to efforts to implement population-based healthcare practice. references 1. kim cs, flanders sa. in the clinic. transitions of care. ann intern med 2013;158:itc3-1. 2. feinglass j, mallama ca, rogers a, et al. using hospital use trends to improve transitional care. healthc (amst) 2017. 3. gubrium jf. narrative practice and the transformation of interview subjectivity. in: gubrium jf, marvasti ab, mckinney kd, eds. the sage handbook of interview research: the complexity of the craft. thousand oaks, ca: sage; 2012. pp 27-44. 4. faircloth ca. after the interview: what is left at the end. in: gubrium jf, holstein ja, marvasi ab, mckinney kd, eds. sage handbook of qualitative research: the complexity of the craft. thousand oaks, ca: sage; 2012. 5. kuraski ks. intercoder reliability for validating conclusions drawn from open-ended interview data. field methods 2000;12:172-94. 6. kangovi s, barg fk, carter t, et al. challenges faced by patients with low socioeconomic status during the post-hospital transition. j gen intern med 2014;29:283-9. 7. bergamo c, juarez-colunga e, capp r. association of mental health disorders and medicaid with ed admissions for ambulatory care-sensitive condition conditions. am j emerg med 2016;34:820-4. 8. strunin l, stone m, jack b. understanding rehospitalization risk: can hospital discharge be modified to reduce recurrent hospitalization? j hosp med 2007;2:297-304. 9. kangovi s, barg fk, carter t, et al. understanding why patients of low socioeconomic status prefer hospitals over ambulatory care. health aff (millwood) 2013;32:1196-203. 10. capp r, misky gj, lindrooth rc, et al. coordination program reduced acute care use and increased primary care visits among frequent emergency care users. health aff (millwood) 2017;36:1705-11. 11. hengartner mp, passalacqua s, heim g, et al. the post-discharge network coordination programme: a randomized controlled trial to evaluate the efficacy of an intervention aimed at reducing rehospitalizations and improving mental health. front psychiatry 2016;7:27. 12. shaffer sl, hutchison sl, ayers am, et al. brief critical time intervention to reduce psychiatric rehospitalization. psychiatr serv 2015;66:1155-61. 13. vigod sn, kurdyak pa, dennis cl, et al. transitional interventions to reduce early psychiatric readmissions in adults: systematic review. br j psychiatry 2013;202:187-94. 14. lamanna d, stergiopoulos v, durbin j, et al. promoting continuity of care for homeless adults with unmet health needs: the role of brief interventions. health soc care community 2018;26:56-64. 15. billings j, raven mc. dispelling an urban legend: frequent emergency department users have substantial burden of disease. health aff (millwood) 2013;32:2099-108. 16. anderson gf, ballreich j, bleich s, et al. attributes common to programs that successfully treat high-need, high-cost individuals. am j manag care 2015;21:e597-600. 17. boutwell ae, johnson mb, watkins r. analysis of a social work-based model of transitional care to reduce hospital readmissions: preliminary data. j am geriatr soc 2016;64:1104-7. 18. coleman ea, parry c, chalmers s, min sj. the care transitions intervention: results of a randomized controlled trial. arch intern med 2006;166:1822-8. 19. golden ag, tewary s, dang s, roos ba. care management’s challenges and opportunities to reduce the rapid rehospitalization of frail community-dwelling older adults. gerontologist 2010;50:451-8. 20. mishler eg. the unjust world problem: towards an ethics of advocacy for healthcare providers and researchers. commun med 2004;1:97-104. 21. mishler eg. patient stories, narratives of resistance and the ethics of humane care: a la recherche du temps perdu. health (london) 2005;9:431-51. 22. bindman ab, blum jd, kronick r. medicare’s transitional care payment-a step toward the medical home. n engl j med 2013;368:692-4. 23. windh j, atkins gl, simon l, et al. key components for successful ltss integration: lessons from five exemplar plans. in: alliance l-tq, ed. project to develop the business case for ltss integration: the scan foundation; 2016:1-127. 24. feinglass j, norman g, golden rl, et al. integrating social services and home-based primary care for high-risk patients. popul health manag 2018;21:96-101. [page 100] [qualitative research in medicine & healthcare 2018; 2:7216] article no nco mm er cia l u se on ly layout 1 it has been more than 30 years since arthur kleinman first published the illness narratives; suffering, healing & the human condition.1 in his preface, kleinman referred to the case of a young burn victim: she taught me a grand lesson in patient care: that it is possible to talk with patients, even those who are most distressed, about the actual experience of illness, and the witnessing and helping to order that experience can be of therapeutic value. (p. xii) he also describes an older patient who suffered from cardiovascular symptoms associated with syphilis, stating that “this patient, like her much younger counterpart, edified me about the difference between the patient’s experience of illness and the doctor’s attention to disease” (ibid.). elaborating further, kleinman argued that …to evaluate suffering requires more than the addition of a few questions to a self-report form or a standardized interview; it can only emerge from an entirely different way of obtaining valid information from illness narratives. (p. 28) kleinman’s work thus demonstrated a phenomenological gap between patient and healthcare provider that can be bridged through understanding of how patients describe their struggles, losses, and victories through storytelling. paying attention to illness narratives is a means of getting up close to the illness experience.1 a few years later, rita charon2 similarly began exploring the functions and significance of medical narratives in work that would blossom into dozens of highly influential books, chapters, and articles that she continues publishing to this day. and it’s been nearly as long since arthur w. frank first published the wounded storyteller,3 a concise, clearly written monograph explaining how patients come to terms with the ways that their bodies and lives are transfigured by telling stories about their struggles with illness. of course, phenomenology of storytelling has a much longer history with respect to treatment and understanding of mental health and arguably neither kleinman, charon, nor frank were the first to apply narrative analysis methodologies to patients’ stories. nevertheless, it wasn’t until the work of these three scholar/practitioners was widely read that the importance of what stories are told, how stories are told, and who tells stories with respect to healthcare coalesced into what we now called the scholarship of “illness narratives.” indeed, in preparing this editorial, i ran a quick database search for “illness narrative” from 1900 to 1987 and found five publications; however, a subsequent search from 1988 to the present led me to over 10,000 publications. perhaps one of the reasons that so much attention is placed on storytelling in healthcare contexts is that stories can be analyzed from many academic directions, including rhetorical and literary studies (e.g., discourse analysis, thematic analysis, and narrative analysis), ethnography, sociology, and psychotherapy to name a few. furthermore, illness narratives in no way need to be limited to patients’ stories. indeed, healthcare providers’ stories are just as important in understanding how illness shapes people’s lives. and the same can be said for stories the practice of qualitative inquiry in illness narrative scholarship warren bareiss department of fine arts & communication studies, university of south carolina upstate, spartanburg, south carolina, usa correspondence: warren bareiss, department of fine arts & communication studies, university of south carolina upstate, spartanburg, south carolina, usa. e-mail: bareiss@uscupstate.edu key words: qualitative inquiry; illness narrative scholarship; patient and healthcare provider; storytelling. received for publication: 30 september 2022. accepted for publication: 30 september 2022. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2022 licensee pagepress, italy qualitative research in medicine & healthcare 2022; 6:10898 doi:10.4081/qrmh.2022.10898 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. [page 62] [qualitative research in medicine & healthcare 2022; 6:10898] qualitative research in medicine & healthcare 2022; volume 6:10898 no nco mm er cia l u se on ly told by caregivers who provide rich accounts of how they, too, adapt (or not) to illness experienced by loved ones. i suppose that illness narratives could be analyzed using quantitative methodologies, but it strains my imagination to think how or why anyone would want to do that. in contrast, i can’t think of a better application of qualitative methodologies than the exploration of human experience of illness by way of narrative analysis. qualitative narrative analysis examines not only what is said, but how it is said within specific contexts to real or imagined listeners. meaning (or more accurately, meanings), is/are fluid—changing from telling to telling, shaped by not only the storyteller, but by contextual conditions and by conceptual filters in the minds of listeners. thus, even those who tell stories have no proprietary hold on meanings implied by the tales they construct. the role of the qualitative analyst is to understand meanings on at least two different conceptual plains. first, qualitative scholars ask what stories and their narrative elements (characters, settings, motivations, and so forth) mean to the storytellers. but that is only part of qualitative researchers’ task. to stop there would be good reporting, but not good analysis. instead, qualitative researchers immerse themselves in many stories, usually told by many people, looking for patterns to, as kleinman said, “emerge.”1 sometimes, narrative analysis is a waiting game, as scholars sift through story after story, hoping and waiting for that moment when one or more patterns become manifest. having done that kind of work, i can attest to the worry one might feel that a pattern might never be evident—and the mixed feeling of accomplishment and relief when it finally becomes clear. and, of course, true to qualitative tradition, no two scholars would be expected to perceive the same patterns. stories speak to everyone in different ways, conditioned by the unique baggage that each of us brings with us as audience members in the narrative process. storytelling is central to all three articles in this issue of qrmh. macdougall et al.4 report on personal videos produced by outpatients in a psychosis intervention program. rather than assess the content of the videos, macdougall et al. examine the value of the story telling to the participants. here, the channel of storytelling is front and center. video production is a collaborative process, so the experience of telling a story is a group effort. the finished videos were, thus, not only an expression of self, but also the outcome of a shared process of meaning making. tullis5 approaches storytelling in a very different way through analysis of discourse among healthcare providers in the context of tumor board meetings. in comparing different types of tumor board discussions, tullis finds that patients’ stories are emphasized much more in some scenarios than in others. specifically, tullis explains that blood and bone marrow tumor board discourse tends to delve deeply into patients’ stories (i.e., taking a more holistic approach to the patient) because those forms of cancer are “inherently relational.” in other words, those patients are more often perceived within the context of family caregivers who are often transplant donors. tumor board discourses in those situations, therefore, are performative contexts wherein stories provide kleinman’s aforementioned bridge “between the patient’s experience of illness and the doctor’s attention to disease.” the final article, from fischer et al.,6 is peppered throughout with dozens of stories. although the stories are brief—often just a sentence or two—they are nonetheless deeply revealing in their totality. a better instance of emerging patterns would be hard to find as the authors demonstrate common themes among healthcare providers’ descriptions of their best efforts during the early days of covid-19. brief quotes provided by more than 20 family physicians blend eloquence with emotion, demonstrating providers’ anxiety, frustration, and burnout, often (though not always) balanced by hope, resiliency, coping, and determination to serve. we at qrmh hope that you will enjoy reading each of these three articles and learn not only about the experiences of the people whose stories are represented, but also about how qualitative analysis of patients’ and providers’ stories can forge better understanding among patients, caregiving family members, and healthcare providers. references 1. kleinman a. the illness narratives; suffering, healing & the human condition. basic books; 1988. 2. charon r. to build a case: medical histories as traditions in conflict. lit med 1992;11:115-32. 3. frank aw. the wounded storyteller; body, illness & ethics. the university of chicago press; 1995. 4. macdougall ag, price e, glen s, et al. a pilot study of participatory video in early psychosis: qualitative findings. qual res med healthc 2022;6:10438. 5. tullis ja. tumor talk: a descriptive study of communication about tumor board meetings. qual res med healthc 2022;6:10717. 6. fischer a, shapiro j, nguyen t, et al. views from the trenches: california family physicians’ challenges and resilience factors while providing patient care during the initial wave of covid-19. qual res med healthc 2022;6:10296. [qualitative research in medicine & healthcare 2022; 6:10898] [page 63] editorial no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2021; 5:10232] [page 95] introduction although cancer death rates have steadily declined for the past three decades, cancer remains the second leading cause of death in the u.s.1 receiving a cancer diagnosis is typically a frightening experience that often involves uncertainty, complex treatment, psychological challenges, and increased support needs from a variety of sources (e.g., family, friends, healthcare providers, and coworkers).2 despite their increased need for social support, people diagnosed with cancer often report challenges receiving the social support they need following their diagnosis.3-5 for many people diagnosed with cancer, community-based cancer wellness organizations provide assorted supportive programming and resources designed to promote psychosocial wellbeing.6-9 community-based cancer wellness organizations are uniquely positioned to meet the varied support needs of people diagnosed with cancer. these organizations offer therapeutic resources (e.g., integrative therapies and support groups) to meet cancer-related emotional, social, and informational needs. much of the literature on cancer support programming has focused mainly on the psychosocial benefits received through participation in support groups, counseling, and other similar programs that may be offered through community-based cancer wellness organizations.10 however, few studies have examined clients’ social support experiences at community-based cancer wellness organizations more broadly6,8,9 and, specifically, how the environment in these organizations may facilitate psychosocial wellbepsychosocial benefits of the social support experienced at a community-based cancer wellness organization andrea l. meluch school of communication, the university of akron, akron, oh, usa abstract this study was designed to identify the sources of social support and the perceived psychosocial benefits people diagnosed with cancer experience at a community-based cancer wellness organization. semi-structured, in-depth interviews were conducted with 31 people diagnosed with cancer who regularly used services at a community-based cancer wellness organization. two themes were identified related to the sources of social support that participants experienced at the community-based cancer wellness organization: i) participants reported that individuals at the center (e.g., staff and volunteers) provided support, and ii) participants perceived the organization as a source of support. further, four themes emerged related to participants’ perceptions of the psychosocial benefits of social support experienced at the community-based cancer wellness organization including i) reduced feelings of social isolation; ii) acceptance at the center in contrast to stigmatizing experiences elsewhere; iii) validation of new identity; and iv) experiences of relaxation and stress relief. the study findings demonstrate that community-based cancer wellness organizations can be a source of connection, acceptance, validation, and stress relief to people diagnosed with cancer. correspondence: andrea l. meluch, school of communication, the university of akron, 302 e buchtel avenue, kolbe hall 110b, 44325 akron, oh, usa. tel.: 330.972.5189 e-mail: alm133@uakron.edu key words: social support; cancer; community-based cancer wellness organizations; psychosocial wellbeing. conflict of interest: the author has no conflict of interests to declare. further information: the data used in this manuscript is from the author’s dissertation. an earlier version of this manuscript was accepted for presentation at the 2021 national communication association convention in seattle, wa. availability of data and materials: data generated or analyzed in this study are included in this manuscript and/or the unpublished dissertation from which this study is based. ethics approval and consent to participate: the kent state university institutional review board approved this study (#15-345). the study conforms to all human protections protocols, and all participants participating in this study signed a written informed consent form for participating in the study. informed consent: written informed consent was obtained for all participants in the present study. received for publication: 19 october 2021. revision received: 30 december 2021. accepted for publication: 31 december 2021. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2021 licensee pagepress, italy qualitative research in medicine & healthcare 2021; 5:10232 doi:10.4081/qrmh.2021.10232 qualitative research in medicine & healthcare 2021; volume 5:10232 no nco mm er cia l u se on ly ing. as such, scholars have not fully examined both the psychosocial benefits clients experience through utilization of community-based cancer wellness organizations and the role of these organizations in facilitating critical social support to people diagnosed with cancer. further, examining clients’ experiences at community-based cancer wellness organizations will contribute to a better understanding of the distinctive value these organizations have to individuals diagnosed with cancer. this study is designed to examine attributions people diagnosed with cancer make regarding sources of social support at a community-based cancer wellness organization and what psychosocial benefits people diagnosed with cancer experience through their utilization of a community-based cancer wellness organization. supportive communication scholars interested in how individuals communicate help and caring have long examined supportive communication exchanges (i.e., social support).11 albrecht and adelman12 identify supportive exchanges as explicitly communicative phenomena. they defined social support as “verbal and nonverbal communication between recipients and providers that helps reduce uncertainty about the situation, the self, the other or the relationship and functions to enhance perception of personal control in one’s life experience” (p. 19). albrecht and goldsmith13 later revised this early definition by arguing that social support allows individuals to “manage” uncertainty. other communication scholars have similarly identified the communicative nature of social support by defining it as communication provided to help another individual that is delivered via verbal and nonverbal behavior.11,14 research examining social support has conceptualized it in a variety of ways. social support has been examined through messages, interactions, and social networks.11 further, researchers have noted that social support can be studied from a functional perspective, through network analysis, and/or through examinations of perceptions of available support.13 as such, the sources of the social support individuals receive (e.g., from a family member or friend) are often examined by researchers interested in supportive communication to understand who provides social support. social support and health research continues to confirm the association between social support and both physiological and psychological health benefits.15,16 for instance, a review by uchino et al.16 of 81 research studies examining the relationship between social support and physiological health concluded that social support influences physiological health by reducing stress and leading to better cardiovascular, endocrine, and immune function. individuals benefit from social support both directly when supportive actions protect individuals from stress (i.e., the direct effects model) and indirectly when supportive communication helps individuals to cope with the adverse effects of stress (i.e., the stress-buffering model).17 researchers have further noted that high-quality social support (e.g., person-centered and validating support) is a predictor of better psychological and physical wellbeing.18 extant literature also demonstrates the markedly positive impact that social support has on psychological health.17,19,20 a systematic review by santini et al.19 concluded that having large social networks and receiving emotional and instrumental support was associated with lower levels of depression. as such, the health benefits individuals experience through social support exchanges continue to be of critical importance to health communication scholars. the benefits of social support for people diagnosed with cancer social support is an ongoing and critical need for people diagnosed with cancer. research examining the associations between social support and health benefits in the context of cancer has found a clear relationship between social support and physical and psychosocial health for people diagnosed with cancer.3,21 for example, donovan and farris’21 systematic review found that interpersonal communication, especially exchanges of social support, was repeatedly associated with better coping and management of stress among people diagnosed with cancer. despite the positive associations between social support and health for people diagnosed with cancer, family members and friends are often ill-equipped to meet the distinct needs of people diagnosed with cancer.3,5,22 hegleson and cohen’s5 review reported that while family and friends are an important source of emotional support for people diagnosed with cancer, family and friends may express support in ways that are unhelpful (e.g., minimizing one’s level of stress) and thus, negatively impact the psychological adjustment of people diagnosed with cancer. consequently, people diagnosed with cancer may find support groups and counseling especially beneficial in terms of addressing psychosocial challenges associated with cancer and cancer treatment.10 in addition to programming designed to address psychosocial support needs (e.g., support groups), people diagnosed with cancer may also experience physical and psychosocial benefits from participation in exercise classes and other types of activities designed specifically for people diagnosed with cancer.23 people diagnosed with cancer often seek supportive programming and resources, such as cancer support groups, exercise classes, and counseling, through community-based cancer wellness organizations. individuals can find community-based cancer organizations across the u.s. and are often referred to these organizations through their healthcare providers.7 although these organizations often differ in terms of specific programming offered and their funding levels, they have been recognized for pro[page 96] [qualitative research in medicine & healthcare 2021; 5:10232] article no nco mm er cia l u se on ly viding programming that fulfills various psychological, social, and physical needs for individuals diagnosed with cancer.8,9 given the prevalence of these organizations and their apparent value to people diagnosed with cancer, it is surprising that limited scholarship has focused directly on the value of these organizations. in particular, understanding the sources of social support within these organizations and the types of psychosocial benefits that individuals receive through utilizing their services may further demonstrate the impact of these organizations for people diagnosed with cancer. this study, therefore, is designed to identify the sources of social support within community-based cancer wellness organizations and the psychosocial benefits people diagnosed with cancer experience through social support at a community-based cancer wellness organization. this study followed a grounded theory approach to answer the following research questions: rq1: what attributions do clients make regarding the sources of social support (e.g., individuals, cancer support groups, organization) received at a community-based cancer wellness organization? rq2: what psychosocial benefits, if any, do clients associate with social support experienced at a communitybased cancer wellness organization? materials and methods midwest cancer wellness center overview participants for the present study were recruited at the midwest cancer wellness center (mcwc, pseudonym), a small non-profit organization located in a midwestern city in the united states. the mcwc was founded by a local family, following the cancer diagnosis of a family member, to provide cancer support resources and services to community members diagnosed with cancer and their families. all services are provided free of charge to people diagnosed with cancer and their family members who visit the center. the mcwc is supported by donations, an endowment from the founding family, annual fundraising events, and a variety of community volunteers. the mcwc offers a wide array of services to clients, including integrative care (e.g., massage therapy and foot reflexology), workshops (e.g., guided meditation), support groups (e.g., a prostate cancer education group and a breast cancer support group), counseling services, exercise classes (e.g., yoga and strength building), beauty consultations (e.g., makeup and wig consultations), and financial and legal services, among other types of programming. clients often visit the mcwc for specific programming (e.g., to attend a cancer support group or to receive a massage) and then sometimes linger at the center talking to the staff, volunteers, and/or other participants. at the time of the data collection, the mcwc had six full-time staff members, three part-time staff members, and many community volunteers. community volunteers were responsible for facilitating much of the mcwc’s programming and services, including performing integrative services, instructing exercise classes, and staffing the mcwc’s front desk. the mcwc served 416 clients at the time of the data collection. clients included people diagnosed with cancer and their family members/caregivers. most mcwc clients were female (75.9%), white (60.6%), and over 55 years old (50.3%). participants there were 31 participants total, including three men and 28 women who were diagnosed with various types and stages of cancer and who regularly used the services at the mcwc. five participants volunteered as support group facilitators or front desk volunteers in addition to utilizing the services provided by the mcwc. the ages of participants ranged from 34 to 82 years (m = 61.19; sd = 10.11). the majority of participants (n = 30) self-identified as white. experiences and diagnoses with cancer varied by participant, with the majority of participants having a breast cancer diagnosis (70.9%, see table 1). data collection semi-structured, in-depth interviews were conducted with mcwc clients who met study inclusion criteria. inclusion criteria included clients who utilized mcwc services at least four times in the past four months. the inclusion criteria were developed with assistance from the mcwc program coordinator in an effort to identify clients who regularly utilized services offered by the organization. based on the program coordinator’s experiences with clients, individuals who used the center four or more times seemed to have a clear understanding of the organization and its programming. at the time of the data collection, 100 clients at the center met the inclusion criteria for participation in the study. the university institutional review board (irb) approved all research protocols prior to the start of the interviews. after receiving irb approval, the program coordinator mailed a recruitment letter to the home addresses of clients who met the inclusion criteria. the recruitment letter explained the purpose of the study and provided participants with my contact information to set up interviews. all interviews took place at the mcwc in a private room following the informed consent process. during the interviews, participants were asked about the programs that they used at the mcwc, their experiences at the mcwc, and their experiences as a person living with cancer. all participants were compensated with a $20 gift card to a local grocery store after the completion of the interview. interviews ranged in length from 32 minutes to 118 minutes (m = 59 minutes; sd = 15.07). interview recordings were professionally transcribed by the [qualitative research in medicine & healthcare 2021; 5:10232] [page 97] article no nco mm er cia l u se on ly transcription service rev.com and resulted in 821 singlespaced pages of transcripts. transcripts were edited to deidentify all participants, and pseudonyms were added to further protect participants’ identities. data analysis nvivo 1024 was used to facilitate analysis of all interview transcripts (e.g., assigning codes to transcript excerpts and organizing codes). i applied the principles of constructivist grounded theory and the constant comparison method throughout the coding process.25 specifically, charmaz’s26 steps for implementing constructivist grounded theory guided the data collection and analysis process. i developed initial codes through the use of lineby-line coding techniques where each line of data was given a short, descriptive code.27 next, i employed focused coding to identify and categorize meaningful and/or frequently used initial codes.26 that is, i reviewed codes that aligned with reoccurring ideas and then compared them to other codes to arrive at the core categories that consistently emerged within the data. finally, through the process of theoretical sampling, i refined categories identified and developed a list of themes associated with study research questions. by examining the connections across the themes identified in the findings, key study takeaways from the themes are integrated and presented in the form of a model (see discussion – figure 1). results sources of social support at a community-based cancer wellness organization the first research question asks what attributions clients make regarding the sources of social support (e.g., individuals, groups, and organizational support) that they receive at a community-based cancer wellness organization. social support scholars have recognized the limitations of attributing social support to individuals alone and have argued that organizations can be perceived as sources of support in addition to individual organizational members.28 two themes emerged related to attributions that participants made regarding sources of social support they received at the mcwc: i) individual sources of support and ii) the organization as a source of support. individual sources of support participants (n =18) repeatedly attributed the social support they received to specific individuals who were associated with the mcwc. for example, lena said, “[the program coordinator] has just been as nice and as cooperative as can be.” further, several participants explained that the program coordinator would often help them find useful programming or recommend specific mcwc resources. paige referred to the office manager as a “savior” and further commented on the connection that they shared by explaining that she often comes to talk to the office manager when she is “totally stressed.” she went on to say that the office manager “will stop whatever she’s doing and talk to you” if you need her to. ginny noted that in her interactions with staff members that they ensure that “you feel like you’re important, that you matter.” while participants often noted that members of the staff, center volunteers, and other clients (who they often interacted with during support groups and exercise classes) were supportive of them, more often than not, they [page 98] [qualitative research in medicine & healthcare 2021; 5:10232] article table 1. summary of participant demographics. participant gender age race cancer diagnosis pseudonym alyssa female 52 white breast cancer audrey female 67 white endometrial cancer carmen female 62 black endometrial cancer carrie female 34 white breast cancer connor male 62 white brain tumor dale male 59 white prostate cancer dolores female 76 white breast cancer elaine female 58 white breast cancer ginny female 62 white breast cancer holly female 53 white colon cancer howard male 67 white throat cancer julia female 50 white breast cancer lena female 65 white breast cancer lily female 49 white breast cancer lindsay female 56 white breast cancer lucy female 71 white colon cancer maggie female 59 white breast cancer melanie female 58 white ovarian cancer millie female 56 white brain tumor nora female 72 white breast cancer paige female 51 white ovarian cancer ramona female 56 white breast cancer sandra female 55 white breast cancer stephanie female 67 white breast cancer tabitha female 59 white endometrial cancer tamra female 50 white breast cancer tara female 58 white breast cancer taylor female 59 white breast cancer terri female 82 white breast cancer vanessa female 51 white breast cancer whitney female 60 white breast cancer no nco mm er cia l u se on ly grouped all individuals affiliated with the organization together and referenced the support as emanating from “the team” or “the staff” (see following section). the organization as a source of support all 31 participants identified the mcwc as a source of support. participants regularly discussed their experiences receiving support by referencing the organization by name – explicitly or implicitly – (e.g., “this place [mcwc]” is supportive) and attributing the support they experienced at the center directly to the mcwc as an organizational entity. for example, holly said, “the mcwc provides a lot of support.” likewise, lucy said, “[the mcwc] gives support... offers services that can help me.” participants remarked that the mcwc was “a great organization” (whitney) and a “huge support system” (howard), indicating that the organization itself was facilitating greater access to social support. sandra explained that she was “so grateful that the mcwc exists.” the majority of participants (n = 24) directly attributed their supportive experiences at the mcwc to the collective staff and volunteers working at the mcwc. for example, lindsay said, “everyone who works, who volunteers, here [at mcwc] is very kind and very caring or they wouldn’t be here.” carmen elaborated: [the staff is] always friendly, and they’re always nice, and they always ask how you’re doing, so they carry a positive energy.... it goes all the way from the top, the administrator, all the way down to the lady that cleans the place. participants also discussed the numerous ways in which the mcwc offered support to participants. for example, millie said, “mcwc offers support not just for mental, but physical, emotional health, mental, everything. they offer it all and they do it well.” similarly, audrey said that the mcwc “offers so many levels of support, from therapeutic to just the psychological.” connor noted that the mcwc was “helping” him emotionally and spiritually. thus, participants consistently identified the many ways that they benefitted directly from the social support they saw as emanating on behalf of the mcwc as an organizational entity. while participants may not be directly familiar with the mission of the organization, it is clear in the data through participants’ consistent recognition of the organization as being a valuable source of social support to meet their needs that they understand the purpose of the organization. that is, participants repeatedly expressed that they saw the mcwc as being there to meet the unique and challenging support needs of people diagnosed with cancer in the community. thus, participants attributing support received to the organization suggests that they not only find the center supportive, but also understand the mission and culture of the organization in creating a supportive environment whereby organizational members deliver social support to people diagnosed with cancer. psychosocial benefits of social support at a community-based cancer wellness organization the second research question examined the psychosocial benefits clients associated with social support experienced at the mcwc. psychosocial benefits are often conceptualized as the positive mental, social, and/or emotional health outcomes associated with the perception of available and/or received social support.17 four themes emerged related to clients’ perceptions of the psychosocial benefits of social support experienced at the mcwc: i) reduced feelings of social isolation; ii) acceptance at the center in contrast to stigmatizing experiences elsewhere; iii) validation of new identity; and iv) experiences of relaxation and stress relief. reduced feelings of social isolation the first theme identified was that participants reported often feeling isolated living with cancer, but explained that through their interactions at the mcwc, they believed that those feelings of social isolation were reduced. people diagnosed with cancer often report experiencing social isolation.29 participants reported that the mcwc was an important way to reduce their feelings of social isolation by creating opportunities for interacting with both mcwc staff/volunteers who understand cancer and other people diagnosed with cancer who also use services offered at the center. for example, howard and tamra explained that they felt “isolated” following their cancer diagnosis because they were unable to interact with others. howard said, “you’re in bed...most of the time. maybe you’ll walk out to the kitchen or living room for a little bit. and then you’re back in bed again. you’re back into that isolation.” likewise, lena said, “i think there is an aloneness to [cancer].” through participating in center programming, participants repeatedly remarked that they did not feel the same isolation and saw improvement in their mental and emotional wellbeing. julia said, “this place [mcwc] was like a godsend. i wanted to do something, but i couldn’t work.” thus, for julia, coming to the mcwc gave her a reprieve from feeling isolated at home. similarly, alyssa said, “[coming to the mcwc is] better than just sitting home and not doing anything. you get out and you see people. you just feel better.” feeling accepted at the center the second theme was that participants felt that they were accepted and comfortable at the mcwc in contrast to feeling stigmatized elsewhere. people diagnosed with cancer often report feelings of otherness and being stigmatized.30 research indicates that people diagnosed with cancer may be labelled “cancer patient” and “cancer victim,” which [qualitative research in medicine & healthcare 2021; 5:10232] [page 99] article no nco mm er cia l u se on ly is a stigmatizing identity.31 some participants in the present study explained that people treated them differently after they were diagnosed with cancer. for example, maggie said people would give her “pity eyes” and that she just “wanted to be treated normally.” similarly, howard said that a friend of his “looked at me like i was like some monster.” study participants discussed how other people are afraid of cancer and that they believe this fear affected their interactions with friends, family, and other people in their lives. connor said, “people are afraid of the ‘c word’. they’re frightened by it.” similarly, tabitha said, “[cancer is] difficult to talk about because people are terrified.” elaine said, “[people are] afraid... they don’t know what to say so they don’t say anything.” lindsay reported that at work, she “wasn’t even allowed to talk about my cancer, because it would upset my coworkers too much.” these repeated comments about participants finding that they could not be open about their experiences with cancer in many of their interactions indicate that they felt rejected and othered by others following their diagnosis. in contrast to their interactions outside of the mcwc, participants reported that the mcwc is “open” (taylor), “accepting” (stephanie), and “comfortable” (melanie, dolores). for example, melanie said, “i believe every cancer patient needs a place [like the mcwc] to feel comfortable.” taylor said that at the mcwc clients can “just be open” about their cancer experiences. she also said that the staff, volunteers, and other clients let “you talk about anything you want to talk about” as opposed to people outside of the center, who may not be receptive to discussions about cancer. topic avoidance and awkwardness is a common experience between people diagnosed with cancer and their family, friends, and coworkers, and these experiences can create distress. 3,22 however, having a place where they feel accepted can benefit people diagnosed with cancer by providing them with a place where they do not feel pitied, othered, or judged. validation of new identity the third theme that emerged related to psychosocial benefits of social support experienced at the mcwc is that participants reported having their new identity postcancer diagnosis being validated at the center. transformative experiences, such as cancer diagnoses, change individuals’ values and behaviors and have lasting effects on their lives.32 participants in the present study often noted that they felt their identity had changed following their diagnosis. for example, elaine said: i think that’s a part of the cancer experience that people don’t expect or understand that might potentially come and i think that’s where [mcwc] helps out because there is that life beyond [cancer]. you just don’t turn it off and say, “okay, i’m done with this [cancer] now.”... you have a different outlook. your life is different. likewise, lindsay said, “you do need [mcwc] because people forget [that you are different].” nora explained that the center was helpful even after she completed treatment: once you get through your treatments and you get to a certain phase it’s like, “okay. now what? where do i go, what do i do?” that’s where yoga has fulfilled that, that little void as to what’s the next step. when people say they’re cancer-free i have a hard time with that because i’m not quite sure we’re ever totally cancer-free. participants’ accounts suggest that the center validates their identity transformation and provides a safe space and encouraging interactions whereby participants’ experiences are welcomed, addressed, and valued. people diagnosed with cancer often report experiencing transformation.30,32 however, individuals’ new identities and experiences with cancer may not be validated or even acknowledged by others. ellingson33 explains that even some non-profit cancer advocacy organizations (e.g., american cancer society and national coalition for cancer survivorship) have advanced narratives (e.g., “waging a battle” and “return to normal”) that do not reflect individuals’ experiences following cancer treatment. as such, participants’ experiences of having their new identities validated at the mcwc demonstrates the positive impact that a cancer support organization can have for individuals struggling to have their experiences and feelings acknowledged following a cancer diagnosis. experiencing relaxation and stress relief the final theme that emerged related to the psychosocial benefits participants experienced was that they were able to relax and experienced stress relief through their utilization of center services. participants explicitly reported that they were able to “relax” (maggie, dolores, alyssa, taylor, stephanie, julia) and “release [stress]” (sandra, paige) after using integrative services (i.e., reiki, facials, foot reflexology, and massage) and participating in mcwc activities (i.e., yoga, mindfulness workshop, and support groups). for example, maggie said, “the reiki helps me relax. i really needed the relaxation. [it] took away the anxiety.” similarly, vanessa explained that she “really enjoy[s]” yoga at the center because “it’s calming at the same it gives you a little bit of physical activity.” people diagnosed with cancer commonly report increased stress.34 when individuals relax, their stress is reduced, and some of the physical manifestations of that stress may be ameliorated. as such, participants’ experiences with the services and programming explicitly designed to help them manage stress suggest that individuals directly benefit (i.e., direct effects model17) from their experiences at the center. thus, experiences at the center that contribute to reducing participants’ stress can have poten[page 100] [qualitative research in medicine & healthcare 2021; 5:10232] article no nco mm er cia l u se on ly tially important health benefits (e.g., better pain management and psychological wellbeing). discussion this study highlights the varied and valuable psychosocial health benefits that people diagnosed with cancer experienced through their utilization of services at a community-based cancer wellness organization. specifically, the data revealed that the organization is a source of connection, acceptance, and validation in their lives that also provides them with services that leave them feeling relaxed and relieved of stress. thus, the data from this study indicate that the organizational culture of the community-based cancer wellness organization shapes a supportive environment through which clients experience various psychosocial benefits. specifically, figure 1 illustrates the process through which the organizational culture at the mcwc shapes how organizational members, such as the staff and volunteers, interact with participants and, importantly, provide social support that results in various psychosocial benefits. further, the process illustrated in the figure shows how the organizational culture can contribute to participants ascribing the psychosocial benefits they experience as occurring as a result of social support experienced through their collective experiences at the mcwc. that is, the participants attribute the support they receive and the associated psychosocial benefits to the organization itself rather than to interactions with supportive individuals alone. thus, the study findings have both practical implications regarding the value of communitybased cancer wellness organizations to people diagnosed with cancer and theoretical implications regarding how alternative healthcare organizations can facilitate social support to people diagnosed with cancer. cancer treatment and survivorship present a variety of challenges for people living with cancer, and the findings of the present study indicate the benefits of communitybased cancer wellness organizations. rosenbaum and smallwood’s8,9 examinations of the experiences of people diagnosed with cancer at community-based cancer wellness organizations indicate that these organizations are often a place for people diagnosed with cancer to receive the emotional support needed to help them cope with their diagnosis. similarly, the present study provides the precise psychological benefits of the social support and further recognizes the important role of the organization in creating an inviting space for people diagnosed with cancer to seek and receive this needed support. as such, the findings of this study have important implications in terms of the usefulness of these organizations to people diagnosed with cancer. these organizations may help fulfill support gaps that people diagnosed with cancer are experiencing and provide social support that meets their varied psychosocial needs in beneficial ways. further, the present findings also demonstrate the value in the range of programming offered by this type of organization in contrast to literature that has examined the value of cancer support groups alone.10 that is, people diagnosed with cancer may need and/or desire an array of programming that cancer support groups single-handedly cannot offer.23 as such, community-based cancer wellness organizations may be able to provide an assortment of resources to meet the various social, emotional, and physical needs of people diagnosed with cancer. researchers have yet to fully consider the role of organizations and in particular, healthcare organizations in meeting the support needs of people diagnosed with cancer. although social support is commonly examined through interpersonal exchanges (e.g., between spouses), social support is often communicated within organizations, especially in healthcare contexts (e.g., provider-patient). zimmerman and applegate28 noted that social support exchanged in organizational environments is subject to “the organizational and cultural environments in which the supportive talk is situated” (p. 59). sass and mattson35 similarly critiqued traditional definitions of social support and their application in organizational contexts, arguing that an organization’s culture can reify supportive norms. as such, social support provided within organizations does not occur in a vacuum and is likely influenced by organizational norms, structures, and practices. norms and practices within organizations shape the culture of the organization and how organizational members behave. in the present study, participants noted how all staff members were “kind” and “caring” and how these supportive behaviors were thus demonstrated across their collective organizational interactions. as such, the findings of the present study are particularly applicable to the notion that organizations shape and even facilitate supportive communication processes through the sum of the [qualitative research in medicine & healthcare 2021; 5:10232] [page 101] article figure 1. supportive exchanges and psychosocial benefits experienced at a community-based cancer wellness organization. no nco mm er cia l u se on ly interactions individuals experience across the organization. that is, the study participants repeatedly discussed how the center created an environment in which they felt connected to others, accepted, and validated. these accounts and the resulting thematic patterns from this study thus demonstrate the integral role of the community-based cancer wellness organization in not only providing supportive resources and services, but how the organization can function as a space that facilitates supportive communication resulting in specific psychosocial benefits to people diagnosed with cancer. study limitations and future directions the present study examined the experiences of people diagnosed with cancer at a small community-based cancer wellness organization. although the findings indicate the value of this particular organization to participants, more research is needed to understand the full extent of the value of social support experienced at community-based cancer wellness organizations. a limitation of the present study is that it only examined participants at one community-based cancer wellness organization. the mcwc may be unique in terms of its organizational culture and clients’ experiences with this organization. as such, clients’ experiences at multiple community-based cancer wellness organizations need to be observed to more fully capture the extent of psychosocial benefits that individuals receive through these centers. a second limitation of this study is that it only examines client experiences. further research may benefit from examining the experiences of employees, volunteers, and other organizational stakeholders (e.g., members of the board of directors) to identify the contributions of organizational members to a supportive culture. additional attention to the mechanisms through which social support is communicated and, in particular, the role of organizational factors (e.g., norms, policies, and practices) would have practical significance from an organizational perspective by expanding scholars’ understanding of the relationship between macro-level organizational forces and micro-level interpersonal interactions. conclusions the present study described the experiences of people diagnosed with cancer who regularly use a communitybased cancer wellness organization. the study findings suggest that people diagnosed with cancer who participate in programming at community-based cancer wellness organizations recognize the value that these organizations have in terms of supporting their cancer journey and recovery. notably, the organization itself fosters an environment that is a source of connection, acceptance, validation, and stress relief to people diagnosed with cancer. the organization as a whole, in contrast to individuals encountered within the organization, holds the immense capacity of facilitating supportive interactions that result in various social, emotional, and physical health benefits. references 1. siegel rl, miller kd, jemal a. cancer statistics, 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[qualitative research in medicine & healthcare 2021; 5:10232] [page 103] article no nco mm er cia l u se on ly layout 1 introduction using qualitative data to develop health interventions qualitative data can be useful in all stages of health intervention development including the design, delivery, and evaluation stages. guidance exists on how to develop complex health interventions (craig et al., 2008), and an expert consensus panel of intervention developers recommends qualitative methods in addition to quantitative methods in designing complex health interventions (o'cathain 2019). specifically, the panel advises that researchers can take a target population centered approach by performing qualitative interviews of the intended target population to inform intervention development. another approach suggested by the panel is to partner with stakeholders to co-design the intervention, obtaining stakeholder input through qualitative interviews and surveys. qualitative data are not only useful in developing de novo interventions, but also in adapting existing interventions for a new target population (duggleby et al., 2020). despite the use of qualitative research methods by health intervention researchers, there is a dearth of studies using qualitative data to inform the adaptation of a stroke preparedness health intervention mellanie v. springer,1 tiffany hodges,1 cristi lanning,2 michael tupper,3 lesli e. skolarus1 1stroke program, department of neurology, university of michigan medical school, ann arbor, michigan; 2eastern michigan university, ypsilanti, michigan; 3university of michigan medical school, ann arbor, michigan, united states abstract qualitative research methods are often used to develop health interventions, but few researchers report how their qualitative data informed intervention development. improved completeness of reporting may facilitate the development of effective behavior change interventions. our objective was to describe how we used qualitative data to develop our stroke education intervention consisting of a pamphlet and video. first, we created a questionnaire grounded in the theory of planned behavior to determine reasons people delay in activating emergency medical services and presenting to the hospital after stroke symptom onset. from our questionnaire data, we identified theoretical constructs that affect behavior which informed the active components of our intervention. we then conducted cognitive interviews to determine emergency department patients’ understanding of the intervention pamphlet and video. our cognitive interview data provided insight into how our intervention might produce behavior change. our hope is that other researchers will similarly reflect upon and report on how they used their qualitative data to develop health interventions. correspondence: mellanie v. springer, stroke program, department of neurology, university of michigan medical school, 1500 e. medical center drive, ann arbor, michigan 48109-5855, united states. tel.: 734.936.9075; fax: 734.232.4447. e-mail: mvsprin@med.umich.edu key words: qualitative data; stroke; health intervention; behavioral intervention. contributions: contributed to the conception or design of the work: ms, ls; drafted the manuscript: ms; revised the manuscript for important intellectual content: ms, th, cl, mt, ls; acquired, analyzed, or interpreted the data: ms, th, cl. conflict of interest: the authors declare no conflict of interest. funding: this work was supported by the national institutes of health/ national institute of neurological disorders and stroke k01ns117555. the funding source had no role in the study design, collection or analysis of data, writing of the report, or decision to submit the manuscript for publication. availability of data and materials: a subset of the data generated or analyzed during this study are included in this published article. ethics approval and consent to participate: the required ethics committee approved this study (irb 1635357). the study is conformed with the helsinki declaration of 1964, as revised in 2013, concerning human and animal rights. all patients participating in this study signed a written informed consent form for participating in this study. informed consent: written informed consent was obtained from participants for anonymized patient information to be published in this article. received for publication: 25 may 2022. revision received: 15 november 2022. accepted for publication: 6 december 2022. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2022 licensee pagepress, italy qualitative research in medicine & healthcare 2022; 6:10639 doi:10.4081/qrmh.2022.10639 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. [page 68] [qualitative research in medicine & healthcare 2022; 6:10639] qualitative research in medicine & healthcare 2022; volume 6:10639 no nco mm er cia l u se on ly that report in detail how qualitative data were used to inform intervention design (wigginton et al., 2020). often, researchers simply report the outcome of their qualitative studies, but there is methodological value in researchers’ reflecting on and reporting how their qualitative data are used to develop interventions (sandelowski & leeman, 2012; wigginton et al., 2020) and how qualitative findings are used to interpret intervention results (lewin et al., 2009). there are significant advantages to thorough qualitative methodology reporting. first, this practice can help other health intervention researchers understand how qualitative data can be used to develop interventions and interpret intervention results. second, researchers might identify the theory-based active components of an intervention through reflecting on their qualitative data. to achieve improved completeness of intervention reporting, researchers can use existing tools. the consort statement for randomized controlled trials of non-pharmacologic treatments states that researchers should describe the components of their intervention (boutron et al., 2017). in behavior change intervention research, taxonomies have been developed to facilitate uniform description of the active components of behavior change interventions. greater specification of the link between theory and selection of the active components of an intervention has also been recommended (michie et al., 2018). when designing behavior change interventions, tables identifying links between theoretical constructs that affect behavior, called “mechanisms of action” (moa), and active components of the intervention that enable behavior change, called “behavior change techniques” (bct), can be used to select the appropriate bct or identify the underlying moa (carey et al., 2019). reflection on qualitative data may lead to the identification of moas, particularly when qualitative research methods are grounded in theory. in this article, we attempt to overcome shortcomings in reporting the outcome of qualitative research for intervention development by adding to the few existing studies that describe the use of qualitative data in intervention development (fjeldsoe et al., 2012; yardley et al., 2015). specifically, we focus on the use of qualitative data in the design stage of health interventions, reporting on how our qualitative data (i) were used to inform development of a stroke education intervention, (ii) revealed moas of our intervention components, (iii) and informed how our intervention might produce positive behavior change. we begin by describing prior research that supports the need to develop a stroke education intervention. next, we provide an overview of our qualitative research methods, presenting our qualitative and quantitative data and the ways that qualitative data were used to inform development of our intervention linking moas to behavior change techniques. we then describe how our qualitative data informed how our intervention might produce positive behavior change. our study consisted of a survey of stroke patients to inform adaptation of our intervention and cognitive interviews of patients to assess their understanding of the adapted intervention materials to determine whether further adaptation was needed. we present the methods and results separately for both parts of the study. background on the need for the intervention stroke is a leading cause of disability (katan & luft, 2018). tissue plasminogen activator (tpa) is a treatment for stroke that reduces disability and can only be given at the hospital within a limited time after stroke symptom onset (national institute of neurological disorders and stroke rt-pa stroke study group, 1995). black americans are less likely to receive tpa than white americans (aparicio, 2015; boehme, 2014; faysel, 2019; hsia et al., 2011a; johnston, 2001; nasr et al., 2013), at least partly due to black americans’ delay in hospital arrival after stroke symptom onset (hsia et al., 2011b; lacy et al, 2001; lichtman et al., 2009; siegler et al., 2013; springer et al., 2017). randomized controlled trials of stroke preparedness interventions for black americans that teach stroke symptoms and the importance of activating emergency medical services (hereafter referred to as “calling 911”) are few in number and have occurred in settings such as schools and churches (williams, et al., 2008; williams, et al. 2019). the stroke ready brief intervention was a randomized controlled trial of a community stroke preparedness intervention among people at a community health center consisting of an oral presentation of a pamphlet on stroke symptoms, stroke treatment, and the importance of calling 911 upon stroke symptom recognition. the brief intervention was found to increase intent to call 911 immediately after the intervention (robles et al., 2020). our objective was to adapt the stroke ready brief intervention for patients presenting to an emergency department of a predominantly black american community. adaptation of the intervention is necessary because of the unique features of the emergency department environment such as its unpredictability, rapid pace, and possible anxiety felt by the patients (wei & camargo, 2000). in future research, we plan to test the ability of the adapted intervention to increase stroke symptom recognition and intent to call 911. we chose the emergency department setting to increase the reach of the intervention to black americans who are at high risk for stroke and those who are frequent users of the emergency department (colligan, et al., 2017).29 intervention materials the stroke ready intervention materials consisted of a pamphlet and a video, both of which describe stroke symptoms, stroke treatment, and the importance of rapid activation of emergency medical services. both the pamphlet and the video are grounded in the theory of planned [qualitative research in medicine & healthcare 2022; 6:10639] [page 69] article no nco mm er cia l u se on ly behavior, which is described in detail below. the video is approximately three minutes long and consists of local actors singing about stroke symptoms and the importance of rapid activation of emergency medical services. the video also contains a skit depicting a person who develops stroke symptoms and a witness calling 911 upon stroke symptom recognition. the pamphlet includes a definition of stroke, the consequences of stroke, an explanation of stroke symptoms, how to check for stroke symptoms, the importance of calling 911 when stroke symptoms start, and a description of stroke treatment. the purpose of our study was to adapt the pamphlet and intervention video, as they were originally designed without the input of stroke survivors. we therefore surveyed stroke patients who delayed in hospital arrival after stroke symptom onset to inform adaptation of the intervention materials. this study was approved by the hospital’s institutional review board and was conducted in agreement with the helsinki declaration. informed participant consent was obtained. survey of stroke patients to inform intervention adaptation materials and methods setting the study setting was a stroke inpatient ward of a hospital located in flint, michigan. the city of flint, michigan has a population of 54% black americans, 38% white americans, and other racial groups in smaller proportions; 51.5% of flint residents are female, and 12% of the population has a bachelor’s degree or higher education (u.s. census bureau, 2021).30 participants participants included in the study were patients hospitalized with stroke who were 18 years of age and older, english speaking, and had arrived at the hospital three hours or more after stroke symptom onset. patients who awoke with stroke symptoms were excluded. survey instrument we developed a survey instrument (questionnaire) to determine reasons that stroke patients delay in hospital arrival after stroke symptom onset and grounded the questionnaire in the theory of planned behavior. the theory of planned behavior states that a person’s intent to engage in a particular behavior is influenced by their attitude toward the behavior, subjective norm/social pressure to perform the behavior, and perceived behavioral control/self-efficacy to perform the behavior (ajzen, 1991). a person’s attitude towards the behavior is influenced by their behavioral beliefs (i.e., expectations about the outcome associated with the behavior). the subjective norm around a behavior, in turn, is informed by a person’s normative beliefs (beliefs about the social expectations around performing the behavior). finally, perceived behavioral control is shaped by control beliefs regarding how easy or difficult it is to perform the behavior (figure 1). the behavior of interest was calling 911 upon stroke symptom onset. we included questions that asked: i) reasons for delay in hospital arrival (in order to determine control beliefs and behavioral beliefs); ii) actions performed upon stroke symptom onset (which may be shaped by one’s attitude towards performing the behavior); iii) self-efficacy for stroke symptom recognition and calling 911; and iv) subjective norms about calling 911. the questionnaire included multiple choice questions with most having the option for the respondent to provide their own answer if none of the options was considered appropriate. response options were based on data from previous surveys and focus groups assessing reasons for delay after stroke symptom onset conducted in similar communities (hsia et al., 2011b; skolarus et al., 2013). several questions asked respondents to rate their level of agreement with a written statement on a likert scale. there was one open-ended question (see supplementary file for questionnaire.) after creating the questionnaire, we performed cognitive interviewing on a convenience sample of stroke survivors to ensure that they understood the questions as intended. cognitive interviewing is a technique used to study how material is understood and processed by the intended target audience. we used the cognitive interviewing technique of verbal probing, asking participants questions to probe their understanding of the survey questions (willis, 2005). the convenience sample consisted of stroke survivors attending a session of a stroke survivor support group. based on the cognitive interviewing, slight modifications were made to the wording of questions to improve comprehensibility. the hospital stroke coordinator distributed the final questionnaire to stroke patients, who self-administered the questionnaire. data analysis given the types of questions asked on the questionnaire, we used a mixed-methods approach to analyze sur[page 70] [qualitative research in medicine & healthcare 2022; 6:10639] article figure 1. theory of planned behavior. no nco mm er cia l u se on ly vey responses. quantitative methods were used to describe the proportion of respondents who selected different answer choices and the proportion who provided the same free-text responses. the number of questionnaire respondents (n=19) was too small to permit inferential statistics on the questionnaire data. after identifying the most frequent responses, we used a qualitative approach by using the theory of planned behavior to interpret the responses. specifically, we categorized responses into the beliefs that comprise the theory of planned behavior. we then used survey responses to inform development of the intervention by linking moas to behavior change techniques (carey, et al., 2019; figure 2). the following section presents a description of the survey participants, organization of survey responses into the theory of planned behavior, response proportions, and linking of mechanisms of action to behavior change techniques. results we surveyed 19 stroke patients between december 2020 and april 2021. participants had a mean (± standard deviation) age of 57 ± 8 years old. of the participants, 58% were men, 63% had at least some college education, 63% self-reported their race as black, 37% self-reported their race as white, and 16% had a self-reported past history of stroke. percentages indicate the proportion of survey respondents who provided the response. theory of planned behavior: behavioral beliefs the most frequent beliefs about stroke symptoms that were identified as reasons for waiting to come to the hospital included that the symptoms would go away (73.7%) and that the symptoms were not serious (31.6%). the majority of stroke survivors (57.9%) understood that they would get an ambulance by calling 911. even though many stroke survivors (57.9%) thought that they would have to pay for the ambulance, very few stroke survivors (15.8%) indicated that the thought of having to pay for an ambulance caused them to delay in calling 911. theory of planned behavior: normative beliefs the majority of participants (89.5%) held normative beliefs about calling 911, with the opinion that most of their friends or family would call 911 if they had symptoms of stroke. many stroke survivors (21.1%) thought that their friends and family would not be able to recognize stroke symptoms or were unsure (31.6%) if their friends and family would recognize stroke symptoms. the majority of stroke survivors (63.2%) called a family member when their stroke symptoms started, and this was the first action after symptom onset in 31.6% of stroke survivors. many stroke survivors (47.4%) eventually presented to the hospital because family told them to do so. theory of planned behavior: control beliefs some participants (31.6%) identified not wanting to miss work as a reason for waiting to call 911. most participants (63.2%) stated that, considering what they knew prior to coming to the hospital, they would know what to do if someone was having a stroke. the majority of participants (63.2%) also stated that, considering what they knew prior to coming to the hospital, they would have been able to tell a 911 operator why they thought someone was having a stroke. how survey results informed development of intervention materials: linking moas to bcts we adapted the intervention pamphlet based on the questionnaire responses. adaptation of the video was not needed to address the survey responses. in modifying the intervention, we directly addressed behavioral beliefs that were identified by stroke survivors as reasons for waiting to come to the hospital— including that the symptoms would go away and that the symptoms were not serious—and, therefore, might influence their attitude towards calling 911. we addressed stroke survivors’ attitude towards the behavior of calling 911 by including information about health consequences. we modified the intervention pamphlet to include the sentence don’t wait for the signs to go away, stroke is serious!. we also added the sentence faster treatment means improved health! (table 1). since stroke survivors expressed knowledge that calling 911 would result in dispatch of an ambulance, we did not reinforce this fact. instead, we emphasized the message to call 911 and get an ambulance as soon as stroke symptoms start. while stroke survivors held normative beliefs that their friends or family would call 911 upon stroke symptom onset, many thought that their friends or family would not or might not be able to recognize the signs of [qualitative research in medicine & healthcare 2022; 6:10639] [page 71] article figure 2. linking theory to mechanisms of action to behavior change techniques. no nco mm er cia l u se on ly stroke. the pamphlet already addressed the lack of knowledge or skills by providing written and pictorial descriptions of stroke signs and how to check for those signs. we added instruction on when to call 911 by stating notice just one sign? reactcall 911!. since many stroke survivors called family when their stroke symptoms started, we provided verbal persuasion about the stroke survivor’s capability of calling 911 by stating time to call 911! make it the first thing you do! (table 1). participants expressed self-efficacy in recognizing stroke symptoms and calling 911. a control belief identified by some stroke survivors included not wanting to miss work which has the potential to influence their attitude toward calling 911. we therefore emphasized the salience of the consequence of not calling 911 by including the reason why rapid stroke treatment is important, specifically the longer a stroke goes without treatment, more of the brain dies! we also emphasized throughout the intervention pamphlet that stroke is an emergency and that stroke is treatable (table 1). cognitive interviews and intervention refinement after having adapted the intervention pamphlet, we interviewed patients presenting to the emergency department of the local hospital to determine whether they understood the content of the intervention pamphlet and video as we intended. materials and methods setting the emergency department of the same local hospital in which questionnaires were administered. participants eligible emergency department patients were 18 years of age or older, english speaking, likely to be discharged home as determined by the emergency department triage system, and lacked severe pain or any other condition which would distract from participation. data collection the research coordinator screened the emergency department triage list for patients who met the eligibility criteria described above and enrolled participants after obtaining informed consent. the research coordinator performed cognitive interviews in the emergency department at the patient’s bedside. participants were asked to read the intervention pamphlet in sections. while participants were reading the pamphlet, the research coordinator noted any challenging words or sentence structures. after each section, the research coordinator asked questions to assess the meaning that the participant had obtained from reading the section. participants then viewed the intervention video in sections. after each section of the video, the research coordinator asked questions to assess the participant’s understanding of the video. (see supplementary file for cognitive interview guides for the initial versions of the pamphlet and video.) interviews were audio recorded and transcribed. results we enrolled 40 participants between july 2021 and november 2021. enrolled participants had a mean (± standard deviation) age of 47 ± 16. of the participants, 40% were men, 57.5% had at least some college education, 37.5% self-reported their race as black, 50% self-reported their race as white, 12.5% self-reported their race as other, and 10% had a self-reported history of stroke. cognitive interviews and intervention adaptation after reviewing the interview transcripts, we identified sections of the pamphlet that were misunderstood by many participants. we modified the wording of those sections. the intervention video was edited to remove repetitive messages. we confirmed the acceptability of the modified [page 72] [qualitative research in medicine & healthcare 2022; 6:10639] article table 1. link between the mechanism of action to the behavior change technique. moa-bct links (carey et al., 2019) stroke intervention moa bct moa bct attitude towards the behavior information about health symptoms will go away; don’t wait for the signs to go away, consequences symptoms are not serious stroke is serious. faster treatment means improved health! knowledge/skills instruction on how to perform friends and family would not or notice just one sign? reactcall 911! the behavior might not be able to recognize stroke symptoms. beliefs about capabilities verbal persuasion about first action after symptom onset time to call 911! make it the first capability was calling family. thing you do! attitude towards the behavior salience of consequences do not want to miss work. the longer a stroke goes without treatment, more of the brain dies! bct, behavior change technique; moa, mechanism of action. no nco mm er cia l u se on ly pamphlet and video via an additional round of cognitive interviews of 10 new emergency department patients who were also identified by screening the emergency department triage list. we found that participants understood these modified intervention materials as intended. intervention materials and possible intervention outcomes the intent of the interviews was to determine participants’ understanding of the intervention pamphlet and video, but we also identified possible mechanisms by which the intervention materials might produce the intended outcome of increasing stroke symptom recognition and intent to call 911. evoking personal experiences with stroke although we did not ask participants about their prior knowledge or experience with stroke, several participants recounted stories about their personal experience with family members or friends who had had a stroke. through these stories, participants affirmed their knowledge of stroke symptoms, the impact of stroke, and evaluated their past experiences with stroke symptom recognition and response in light of what was described in the intervention material. for example, when one participant was asked their understanding of the stroke signs presented in the pamphlet, the participant stated “like i said, i have my mother and my grandmother who have it. i know all the signs.” another participant stated, “if you…like if i saw that the mouth or the face was drooping, i’d be on the phone with 911 instantly…because that’s to me the first sign of what i saw my cousin go through.” when asked to explain what was meant by the phrase disability caused by stroke can leave a person unable to do everyday, normal activities, one participant drew on their personal observation of stroke to describe the impact of stroke and stated, “…normally it changes up a person’s living in, like you said, daily activities, because i know a lot of people have strokes, they lose their jobs, and they can’t return to work because they’re high risk.” when one participant was asked their understanding of the pamphlet’s explanation of how to check for stroke signs, the participant evaluated their past experience with evaluating and responding to stroke signs: because mom was just like laying on the couch. i would have never thought…or did i pick her arm up? now i know if i’m around anybody i think’s maybe having one, i’ll know to raise both their arms. and, and i did get the ambulance. some of the family didn’t think they got there fast enough, of course…. but i think they got there in a reasonable time. the intervention materials caused the participants to reflect on their own knowledge and experiences with stroke. drawing upon a sense of community the intervention video contained scenes of local landmarks, and participants were asked what thoughts came to mind when seeing them. some participants linked the local landmarks to the relevance of the intervention for their community. one participant stated, “[it means] that it’s [stroke is] happening closer than we think…showing you that it’s right here in our community.” one participant similarly stated, “when they see that, they think, this is in my neighborhood, or this is in our area.” another participant said, “they really trying to get flint people to care about, um, strokes.” the local landmarks evoked a sense of comfort and community, as one participant remarked, “ah, i feel a little more comfortable just seeing it from flint. it’s flint people.” another participant stated, “oh, home. i’m a flintstone,” and a different participant stated, “um, that it’s kind of like our hometown.” eliciting emotional responses although not specifically asked, some participants expressed their emotional response to the intervention content. when asked their understanding of the phrase stroke is common, some participants voiced fear in response to this fact. according to one participant, “it means that a lot of people have strokes, and it is…it is very…it is very common, yes. actually, my-my significant other had a mild stroke years ago. it’s frightening.” another participant stated, “that’s kind of scary, too. i don’t think it should be common, but that’s life….” other participants expressed fear when reading the sentence on the intervention pamphlet that stroke causes part of the brain to die. discussion in the sections above, we described how qualitative data informed development of our stroke education intervention. we found that grounding questionnaire items in a behavior change theory facilitated adaptation of our intervention. our questionnaire revealed attitudes that may be associated with a delay in calling 911 upon stroke symptom recognition. we addressed these attitudes in the intervention pamphlet by adding information about the health consequences of stroke and about the consequences of not calling 911. survey participants identified possible shortcomings in knowledge, skills, and capability associated with calling 911 for stroke. we therefore added instruction on when to call 911 and persuasion about their capability of calling 911. we showed how a behavioral change theory—the theory of planned behavior—was useful in developing our stroke education intervention. using the theory of planned behavior, we were able to identify behavioral, normative, and control beliefs that influenced the behavior of delay in [qualitative research in medicine & healthcare 2022; 6:10639] [page 73] article no nco mm er cia l u se on ly going to the hospital upon stroke symptom onset. we adapted our intervention to address those beliefs by identifying the links between moas, or theoretical constructs, and active components of the intervention, or bcts. linking moas to bcts in the intervention adaptation or design phase can thus contribute to more effective behavioral interventions (carey et al., 2019; michie et al., 2018). through cognitive interviews that were intended to assess participants’ understanding of the intervention materials, we learned that the intervention materials caused some participants to reflect on their personal experience with family members or friends who had a stroke. these participants constructed their own narrative around recognition of stroke signs or response to stroke signs. the use of narratives in health interventions has been shown to positively change attitudes, beliefs, intentions, and behaviors in black american populations (ballard et al, 2021; houston, et al., 2011), which is a finding that has great relevance given the target population of our intervention. through our qualitative methodology, we also found that the visual depiction of community landmarks in our intervention video elicited a sense of community belonging—i.e., connectedness between an individual and his/her community (hystad & carpiano, 2012)—in some of our participants. a dose-response relationship has been reported between a person’s perceived degree of community belonging and health behavior change, such that a stronger sense of community belonging is associated with increased likelihood of undertaking health behavior change (hystad & carpiano, 2012). the sense of community belonging evoked by including landmarks in our intervention video might, therefore, be a mechanism through which the intervention can effect positive behavior change. conclusions in this manuscript, we have described how our qualitative data informed development of our behavioral intervention. we showed how grounding data collection instruments in behavior change theory facilitates interpretation of the results and identification of moas that can be linked to bcts to be included in the intervention. we also showed how qualitative data collected for intervention development can provide insight into how the intervention might produce its intended effect. our hope is that greater reflection and more detailed reporting of how qualitative data are used in intervention development will facilitate the development of effective behavioral interventions. references aparicio, h. j., carr, b. g., & kasner, s. e., 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(2015). the person-based approach to intervention development: application to digital health-related behavior change interventions. journal of medical internet research, 17(1): e30. [qualitative research in medicine & healthcare 2022; 6:10639] [page 75] article no nco mm er cia l u se on ly https://www.census.gov/quickfacts/flintcitymichigan https://www.census.gov/quickfacts/flintcitymichigan layout 1 [qualitative research in medicine & healthcare 2022; 6:10438] [page 33] introduction psychotic disorders are a group of serious mental illnesses that are characterized by clusters of complex symptoms classified as positive (e.g., disorganized speech, erratic behaviour, delusions, hallucinations) or negative (e.g., lack of emotion, motivation, interest).1 the first episode of psychosis typically occurs in the late teens and early twenties, a crucial period of personal development,2 which can have a considerable impact on longterm health outcomes.3,4 recovery from psychosis is traditionally defined in terms of clinical outcomes, specifa pilot study of participatory video in early psychosis: qualitative findings arlene g. macdougall,1,2,3 elizabeth price,3 sarah glen,4 joshua c. wiener,2 sahana kukan,2 laura powe,1 richelle bird,3 paul h. lysaker,5 kelly k. anderson,1,2 ross m.g. norman,1,2,3 1department of psychiatry, schulich school of medicine and dentistry, western university, london, ontario; 2department of epidemiology and biostatistics, schulich school of medicine and dentistry, western university, london, ontario; 3parkwood institute research, st. joseph’s health care london and lawson health research institute, london, ontario; 4faculty of health sciences, mcmaster university, hamilton, ontario, canada; 5department of psychiatry, indiana university school of medicine, indiana university, indianapolis, indiana, united states abstract for people with psychotic disorders, developing a personal narrative about one’s experiences with psychosis can help promote recovery. this pilot study examined participants’ reactions to and experiences of participatory video as an intervention to help facilitate recovery-oriented narrative development in early psychosis. outpatients of an early psychosis intervention program were recruited to participate in workshops producing short documentary-style videos of their collective and individual experiences. six male participants completed the program and took part in a focus group upon completion and in an individual semistructured interview three months later. themes were identified from the focus group and interviews and then summarized for descriptive purposes. prominent themes included impacts of the videos on the participants and perceived impacts on others, fulfilment from sharing experiences and expressing oneself, value of collaboration and cohesion in a group, acquiring interpersonal and technological skills, and recommendations for future implementation. findings of this study suggest that participatory video is an engaging means of self-definition and self-expression among young people in recovery from early psychosis. correspondence: arlene g. macdougall, parkwood institute, mental health care building, st. joseph's health care london, london, on, n6a 4v2 po box 5777, stn b, canada. tel.: 1-519-646-6100 ext. 47240. e-mail: arlene.macdougall@sjhc.london.on.ca key words: psychosis; early intervention; participatory video; narrative development; recovery. acknowledgements: we would like to thank sarah glen and yan theoret at projectvideo inc. for their partnership on this work. we also would like to thank the staff of the prevention and early intervention program for psychoses (pepp) in london, ontario, canada for their support of this study. contributions: agm was principal investigator and involved in all aspects of the project. ep oversaw data analysis and initial preparation of the manuscript. sg oversaw data collection. jcw oversaw development and revision of the manuscript. sk, lp, and rb assisted with data analysis. phl provided guidance on project formulation. kka provided guidance on data analysis. rmgn assisted with project formulation and data analysis. funding: this study was supported by research discretionary startup funds provided to agm from the department of psychiatry, schulich school of medicine & dentistry, western university. the funding body did not play any role in study design, data collection, statistical analysis, manuscript writing, or submission for publication. conflict of interest: the authors declare no conflict of interest. availability of data and materials: all data generated or analyzed during this study are included in this published article. ethics approval and consent to participate: the western university health sciences research ethics board approved this study (id 106332). the study conforms with the helsinki declaration of 1964, as revised in 2013, concerning human and animal rights. all patients participating in this study signed a written informed consent form for participating in this study. informed consent: written informed consent was obtained from a legally authorized representative(s) for anonymized patient information to be published in this article. received for publication: 2 march 2022. revision received: 19 june 2022. accepted for publication: 20 june 2022. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2022 licensee pagepress, italy qualitative research in medicine & healthcare 2022; 6:10438 doi:10.4081/qrmh.2022.10438 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. qualitative research in medicine & healthcare 2022; volume 6:10438 no nco mm er cia l u se on ly ically the remission of psychotic symptoms.5,6 however, more recent conceptualizations of recovery encompass improvements in functional, cognitive, psychosocial, and personal outcomes, as well as the process of achieving these improvements.5,6 according to the narrative perspective of psychosis, the early stages of recovery involve developing a coherent understanding of psychotic experiences and integrating them into meaningful personal narratives.7,8 people with psychotic disorders often have less elaborate and coherent personal narratives than others,9,10 and thus, they may require active interventions for narrative development that encourage self-reflection, promote self-awareness, improve selfesteem, and challenge self-stigma.11,12 research evidence suggests that therapies for psychotic disorders focusing on narrative development can facilitate recovery, including reduced symptoms and improved functioning.13–17 however, we are not aware of a narrative development therapy designed for young people experiencing early psychosis. participatory video is an intervention that has been used to foster identity formation and personal empowerment in a variety of marginalized populations.18 the intervention is a dynamic process in which a group of participants create short videos about their shared and personal life stories with the guidance of trained facilitators.19,20 video is a particularly engaging and accessible tool for young people to develop and perform their personal narrative; through video narrative, people can view themselves as active agents in their reclaimed life stories.19,21 the exercise of creating videos enables participants to explore and express their unique experiences and perspectives in a safe environment, while viewing the videos can inspire further reflection, awareness, and definition of oneself.20,21 as such, participants can benefit from both the process and the outcome of participatory video. currently, there is limited research evaluating participatory video as an intervention in early psychosis. prior studies have found that the videos created by participants with serious mental illness were successful in raising awareness of their needs and desires to healthcare workers22 and in challenging stigma about mental illness among the general public.23 however, these studies examined participatory video as a knowledge translation tool regarding mental illness rather than as an intervention for the benefit of the participants. in contrast, the purpose of this pilot study was to gain experience with participatory video as a clinical intervention for young people experiencing early psychosis and to describe participants’ reactions to and experiences of the participatory video process. materials and methods design this study reports on qualitative data from a mixed methods, pre-post interventional pilot study. a focus group with all participants was completed two weeks after the intervention, and individual, semi-structured interviews with each participant were completed three months later. quantitative indices of the acceptability, feasibility, and potential clinical utility of the intervention are reported elsewhere.24 the study protocol was approved by the western university health sciences research ethics board (id 106332). setting the pilot study was conducted at the prevention and early intervention program for psychoses (pepp) in london, ontario, canada. pepp is an outpatient early psychosis intervention clinic located at victoria hospital, a public acute care hospital part of london health sciences centre (lhsc). the lhsc hospital network is affiliated with local educational and research institutions and provides care to the city of london and its neighbouring counties. the standard treatment at pepp involves assertive case management, psychotherapy, and pharmacotherapy, as well as supports for education, employment, and recreation. the care provided at pepp has been previously described in detail.25 participants participants were eligible for inclusion in the study if they were within their first three years of treatment at pepp for a diagnosis of psychotic disorder, not exhibiting severe positive symptoms of psychosis (i.e., hallucinations, delusions, bizarre behaviours, formal thought disorders), and not involved in other research projects with active interventions at pepp. patients were approached by a research assistant who explained the study in detail and provided an opportunity for questions. upon successful recruitment, all participants provided written informed consent. a total of ten participants were initially recruited into the study. four participants withdrew prior to the end of the study for reasons unrelated to the intervention: i) after two sessions due to starting full-time employment; ii) after two sessions due to resuming full-time post-secondary education; iii) after two sessions due to moving to another city; and iv) after six sessions due to relapse of psychotic symptoms. baseline clinical and demographic characteristics of the final sample of six male participants are summarized in table 1. intervention the novel participatory video intervention consisted of 13 semi-structured, group-based workshops lasting approximately two hours each held every two weeks over the course of six months. the workshops were facilitated by a psychiatrist at pepp and two media facilitators from projectvideo inc., an organization that works with a team of media professionals across canada to develop highquality video for complex stories in a variety of settings. [page 34] [qualitative research in medicine & healthcare 2022; 6:10438] article no nco mm er cia l u se on ly an overview of the participatory video workshop sessions is outlined in table 2. the participatory video process was divided into three stages: pre-production, production, and post-production. each stage consisted of four workshops, which were followed by a viewing session and celebration. during the workshops, participants worked collaboratively as a production team to create a group video as well as personal videos for each participant. media facilitators trained participants in basic audio-video production using ipad™ tablets and the imovie™ application which were used to record and edit the videos. final editing was completed by the media facilitators alongside the participants using the professional video editing application final cut pro™. outputs for the group video, participants determined by con [qualitative research in medicine & healthcare 2022; 6:10438] [page 35] article table 1. clinical and demographic characteristics of participants. variable age (years) mean (standard deviation) 23.1 (2.1) gender male 6 primary diagnosis schizophrenia 2 psychosis not otherwise specified 2 schizoaffective disorder 1 fetal alcohol spectrum disorder 1 ethnicity caucasian 3 hispanic 1 aboriginal 1 other 1 living arrangements alone 3 with parents 3 marital status single/never married 5 married/domestic partnership 1 education level some high school 3 high school 1 some college 1 college 1 table 2. overview of participatory video workshop sessions. pre-production workshop, sessions 1-4: • group connectedness: who are we as a group? why did we come together? how will we work together throughout the project? • development of group expectations, norms, and roles. • explore the concept for the project, its goals, visual treatment, and sources. • develop a storyboard with the participants to map out their plan for videos. • organize, manage, and schedule the production shoots. • personal/group reflections: what role am i in the group? why did i choose this role? what do i hope to learn through this experience? production workshop, sessions 5-8: • group check-in: how are we functioning? what is working? what needs to change? • film appropriate secondary footage and conduct interviews (where necessary). • record appropriate voiceover narration and music (where necessary). • discuss how to share feedback to others. • personal/group reflections: what have i learned, am learning, hope to learn? how has my role changed in the group? am i comfortable with changes in the group and project? post-production workshop, sessions 9 12: • group check-in: how are we functioning? what is working? what needs to change? are we where we thought we would be now? • develop graphic and music treatment. • author master versions of the video for distribution by agreed-upon deadline. • plan for how to share the final video with the group and others. • personal/group reflections: where do we go from here? how do want to support each other now that we are ending our time together as a group? final viewing and celebration, session 13: • group viewing of the final group video and individual videos. • celebrating group and personal accomplishments. • certificate of completion and flash drive with personal video for each participant. no nco mm er cia l u se on ly sensus that it would be a documentary-style video about psychosis, which they wanted to be “authentic” and ultimately “help people.” the four-minute video opened with a brief segment in which participants listed stigmatizing labels for psychosis and then transitioned to segments about each of the participants. these segments explored participants’ lived experiences of mental illness and what they have taken away from these experiences, along with their unique skills, interests, ambitions. moreover, participants demonstrated how they are much more than, and are not defined by, their mental illness. personal videos varied in length and content, reflecting a personal narrative of their choice. one participant, for example, simply filmed himself describing his past delusional beliefs and hallucinatory experiences. notably, this participant’s recounting of his psychotic symptoms through this medium was much more extensive and detailed than what he had previously disclosed to his psychiatrist and mental health clinicians at pepp. upon completion of the intervention, all participants consented to sharing the group video with a variety of local audiences including mental healthcare providers, university students and faculty, and family members of other patients at pepp. four participants came to at least one of the viewing events to share their personal videos and to engage in discussions with audience members. two of the participants also joined the research team in presenting the group video and their personal videos, along with preliminary study findings at a large conference on early psychosis intervention within ontario. assessments two weeks after the intervention, all six participants met for a facilitated focus group discussion lasting approximately 70 minutes. the discussion covered their overall reactions to the entire participatory video process (e.g., working together, creating the videos, and viewing the finished videos), positive elements of the process, aspects of the process that could be improved, and suggestions for enhancing the process (see appendix a for details). three months after the intervention, each of the six participants was interviewed in person using a semi-structured format averaging about 13 minutes. participants were asked about their personal experience with the participatory video process and any changes that it may have engendered in their lives (see appendix b for details). analysis the focus group and follow-up interviews were audiorecorded and transcribed with all participants’ permission. separate thematic analyses of the focus group and interview transcripts were performed using nvivo 11 software (qsr international pty ltd., 2016). thematic analysis is an effective and foundational qualitative method to identify, analyze, and report patterns and themes within data.26 transcripts were initially read independently by three research team members who recorded general themes that they judged to be related to the participatory video experience. the research team then worked together and decided on the final themes to be used in coding the transcripts. for each analysis, there was a high degree of similarity in the themes each researcher identified, and thus, consensus was easily achieved. results a total of 249 participant responses (110 from the focus group and 139 from the interviews) were coded into 16 themes. for each analysis, a substantial portion of participant responses reflected components of several themes and were coded more than once. the themes identified from the focus group and follow-up interviews were very similar; themes that displayed overlap were combined to reduce redundancy. the final themes reported are comprised of responses from both the focus group and follow-up interviews, unless otherwise specified. seven themes were identified: i) personal and perceived impacts, ii) mutual creation, iii) sharing stories, iv) learning skills, v) self-expression, vi) group environment, and vii) recommendations and challenges. personal and perceived impacts the impact of participatory video on participants and its potential impact on others was a notable theme from participant responses. personal impacts of creating the videos participants often described undergoing some form of personal change through the intervention. participant 1, for example, said that he developed better insight into his own experiences; for him, participatory video was “a huge opportunity for self-reflection and learning about yourself, and growth and development.” he further elaborated: it’s given me an opportunity to look at different ways you can tell a personal story. it also fits into the bigger picture of my journey, how i see the pattern of my personal journey, the path of my life. thus, through the process of developing their personal narrative, participants gained perspective on their past experiences and present circumstances within the context of their lives. participants also touched upon changes in how they interact with and relate to others. as participant 3 noted in his follow-up interview, “i definitely deal with people better. my people skills [increased] to an extent.” he also gained confidence in speaking about his personal experiences with psychosis, as he explained, “my confidence in being able to tell my story has changed, be[page 36] [qualitative research in medicine & healthcare 2022; 6:10438] article no nco mm er cia l u se on ly cause at the very beginning i was too shy – almost embarrassed – to tell my story. but i’ve definitely come out of the box.” for participant 4, the participatory video process helped alleviate feelings of isolation: “i understand now i am not alone.” personal impacts of watching the videos in the follow-up interviews, all participants indicated that they had watched the group video and their own personal video at least once since they were completed. an important personal impact of watching the videos was how they elicited reflection on past experiences, whether positive or negative. for instance, participant 2 said that upon watching his personal video, “i remember all the bad what’s happened in the past.” in contrast, participant 3’s personal video elicited optimistic thoughts about his main passion: “mostly about my music… it’s kind of my career.” another impact of watching the videos was managing expectations. in his follow-up interview, participant 3 explained about his personal video: “i started out with a more ambitious project and ran out of time.... i feel i was never going to get it finished if it was as elaborate as i was planning it to be.” he also described reacting to various production aspects of the group video: “the video was not the right length… [the music] had to repeat and it was a weird ending, and there was an awkward silence bit in the middle.” perceived impact of watching the videos on others five participants indicated they had shared with others observations about the participatory video process, and two of those five also shared their personal videos online. these participants discussed possible benefits of sharing the videos such as increasing awareness and reducing stigma around psychosis. when describing the group video, participant 6 said, “it would benefit whoever watches it, even in the community... to clear up the stigma and show them that there’s people trying to do the same, to better [themselves] and show guidance to people.” it was also suggested that the videos had potential to increase empathy among healthcare professionals. as participant 4 expressed: “people watch the video and understand everybody talking about their self and psychosis.... maybe doctor[s] don’t have what their patients [are] talking [about], and doctor[s] watch this and [think] ‘oh… some person like [my patient has] something [that is] similar.’ ” participants suggested that the videos could also have a positive impact on other people with psychotic disorders. by sharing their own experiences of psychosis, participants have the opportunity to show their peers that they are not suffering alone and possibly empower viewers to share their own stories. this sentiment was exemplified by participant 1: everyone has a story and everyone can tell that story.... i would really like for people to feel that it’s completely within their power to do something to magnify their own voice, which is what i think part of what we did here. however, participant 5 did not share his involvement in the project with others due to persistent feelings of stigma toward mental illness: “i wanted [the video] to be private because anything you do is connected to that ‘mental illness’.... it could ruin a reputation.” mutual creation participants appreciated the overall communal and collaborative nature of the participatory video process. their responses highlighted the experience of being part of a collective enterprise that was larger than themselves. during the focus group, participant 1 explained: i believe what drove the group to stay together was the common purpose that we all shared. you could see it reflected in our hearts. it’s larger than anyone of us individually, and even as a collective, it’s larger than us. it’s the idea that we had something to take care of and to see to the end. it was our responsibility, but also our complete joy and satisfaction to see accomplished what we initially set out to do. for all participants, the group aspect of participatory video was a driving force for them to commit to and ultimately complete the project. participants reported improvements in their ability to work effectively with others and as part of a group. according to participant 3, “there was an amount of trying to learn how other people’s ideas would work. towards the end, i was like, ‘you know what? let’s just get it all in there – it’s everybody’s project.’ ” he also recalled a moment of clarity about collaboration during the project: “ ‘that’s going to look great in the final shot’.... i remember thinking, ‘yeah, this is what makes it good to work in a group with each other.’ ” moreover, participants recognized the strength derived from the diversity of the group members. this notion was described by participant 6 who said, “it’s awesome because we all have different backgrounds, we all come from different stuff, and we all come here for this certain – what’s the word – commonality?” sharing stories participants’ desire to share their stories with a wider audience, and with each other, motivated them to complete the project. all participants articulated how they hoped to be seen by the public as more than their illness, as explained by participant 4: “we had our experiences but we’re still just people, and we’ve got ideas and things to offer the world, and it’s good to acknowledge that once in a while.” the practice of sharing stories also helped participants de [qualitative research in medicine & healthcare 2022; 6:10438] [page 37] article no nco mm er cia l u se on ly velop a deeper understanding of each other. participant 3, for example, articulated that “learning not necessarily [about] their abilities, but their personal lives and their experiences from their own stories that they told” was an important part of the participatory video process. the importance of sharing the videos was reflected in participants’ pride for the group and for themselves, along with their satisfaction from meeting objectives and completing the videos. for example, participant 4 described working on his personal video outside of the group: i was working on [the video] at home and was really interested to bring back what i’[d] done and add to it .... then i would go to the group… talk about some of the ideas i’d have… and they were all excited to see the progress, so it was good on a personal level to be able to share .... that’s what kept me coming back. for this participant, the opportunity to share his story with the rest of the group was yet another motivator for him to complete his video. these feelings of accomplishment were still apparent among participants during the follow-up interviews such as when participant 2 remarked that, “i’m proud of my involvement in the videos, and i’m proud of everyone else who helped make them.” similarly, participant 1 said that, “having something to focus on for extended periods of time... helped me prepare for the direction i started going in. it helped me get into the practice of doing something and trying to finish something on time.” these sentiments were echoed by participant 3, who also explained that the temporal demands of group work enhanced his sense of accomplishment: “there were many times that i was worried that... we wouldn’t have finished the group video. but we did finish it, and i was happy about that.” learning skills participants discussed learning technical, creative, and organizational skills throughout the participatory video process. their responses highlighted the ease with which they acquired skills – and even developed a sense of mastery – in audio-visual production, including storyboarding, directing, recording, and editing as participant 3 described, “i learned setting up a camera shot and setting up the frame,” while participant 1 shared, “the video editing software. that was a very fresh experience.” participants reported learning specific skills not only from media facilitators, but by watching other participants in action. during his follow-up interview, participant 3 rremembered: “two of the group members... were trying to set up a single shot.... [it] wasn’t some special effects, high production thing.... it’s not as difficult as it necessarily seems – that was something i specifically learned from other group members.” moreover, participants noted how their ability to participate in and contribute to the project was not contingent upon their prior experience with audio-visual production. from the perspective of participant 3, “a lot of valuable skills can be learned from this group.... it doesn’t require any background knowledge on how to make a video.” self-expression during the focus group, participants expressed how participatory video gave them a platform from which to express themselves while also learning new ways to do so. as participant 2 described: “it gave me a chance to not only express myself, but show people my music side of things, so that was cool.” the experience of self-expression was also noted as being cathartic, as explained by participant 6: “it’s a good outlet if you hold onto your emotions and bottle them up. you can express yourself that way and it could lead you onto a better pathway.” group environment the overall tone and atmosphere of the group contributed to participants’ satisfaction with the participatory video workshops. positive relationships between participants and facilitators appeared to create a group environment where participants felt supported and engaged. from participant 1’s perspective, “the facilitators were super friendly, super encouraging. my co-participants were awesome too. it made the whole process more enjoyable.” participants also conveyed that they genuinely looked forward to attending the workshops, as noted by participant 2: “everybody was happy to be there, and i think that’s what made me happy to be there.” accordingly, all participants expressed that they enjoyed participating in the project, which participant 3 summed up as being “a good experience.” participants expressed willingness to join a similar participatory video project in the future. they cited their desire to make more videos and the positive feelings of finishing a project as their primary motivators for returning. for two participants, however, their involvement would depend on certain factors such as the project’s topic and the group members’ skills. as participant 3 explained, “it would depend on the group. if it was a different group of more people with different ability of using the technology, like a ‘round two’ type group of people who have learned from ‘round one.’” for participant 6, his involvement would depend on his interest and motivation upon reflection: “i’ll think about it. if i feel up to it, i might.” recommendations and challenges several recommendations for future participatory video groups were made during the focus group and interviews. participants recommended that the participatory video project be expanded, including developing a larger network of participants and organizations. as summarized [page 38] [qualitative research in medicine & healthcare 2022; 6:10438] article no nco mm er cia l u se on ly by participant 5, “i think it’s a good start. they should do this a lot more often with other people.” participants also suggested that facilitators develop more structured goals during workshops and allow communication among group members between workshops. according to participant 5, “we didn’t communicate as good as i think we should have. if we had a forum where we could have kept talking.... there was two weeks between the actual classes…[and] it made me less productive.” for future participatory video group members, participants emphasized the importance of fully committing to the group and finishing the project. this point was noted by participant 1 who stated, “once you start, do your best to stick it out, go to the very end. just showing up goes a long way.” participants also stressed the value of keeping the entire process flexible, as explained by participant 3: “it might turn [out] differently than you would expect. there will be last minute juggling to get everything together. but if you have the motivation and you put in the effort, you’re going to get some good results.” challenges experienced by participants included differing levels of skill, experience, and involvement among group members. these issues were summarized by participant 3, who said in his follow-up interview, “in the sense of being there to support the rest of the group, not everyone was there. some people were there every week and they did contribute valuable ideas, and other people showed up right at the end.” from his perspective, these differences in contribution and commitment were not properly reflected when assigning credit for the group video: “[the credits were] an alphabetical list. [the] name [that] was alphabetically first on the list literally did the least amount of work.” discussion people with psychotic disorders often experience poor insight into the symptoms and consequences of their illness which can be a considerable barrier to their recovery.27 research suggests that developing a personal narrative concerning the meanings of one’s experiences with psychosis can enhance self-understanding, thereby facilitating improvements in symptoms, functioning, quality of life, and other long-term outcomes.28–30 however, people with psychotic disorders may lack effective means of personally processing and expressing their difficult and isolating experiences as well as sharing them with family, friends, mental health care providers, and the wider community.27 participatory video can help fill this gap by providing a means through which participants can express themselves, validate their personal realities, and communicate their life stories, while having control over the process and outcome.19–21 participants described several elements that contributed to their continued engagement in the project, many of which are characteristic of the participatory video process.18 the group environment made participants eager to engage in the workshops, and being part of a collective with a common purpose motivated them to collaborate throughout the project. participants noted that the involvement of media facilitators enabled an effective and efficient process, while the use of ipad™ tablets allowed them to complete the project without having prior experience in audio-video production. the opportunity to share experiences, challenge stigma, and reach the broader community was relevant and important to participants, contributing to the perceived worth of the project. people who construct fuller personal narratives tend to experience higher levels of mental wellbeing.31 as such, several personal benefits of the intervention were cited by participants, including increased self-esteem and self-confidence, sense of pride and accomplishment, improving interpersonal skills, and learning new technical skills. these benefits are consistent with those reported in prior studies of therapies for narrative development, such as narrative enhancement and cognitive therapy,13–17 as well as with the quantitative findings of this pilot study.24 beyond any direct benefits to participants, participants’ videos have the potential to enhance clinicians’ awareness regarding the nuances of patients’ recovery processes and to increase their compassion in supporting such processes.32 in this respect, the narrative material generated through participatory video could have a unique knowledge translation impact compared to more traditional presentations of information.32 the goals of this pilot study were to gain experience with participatory video as a clinical intervention for early psychosis and to gauge participants’ reactions to and experiences with the participatory video process. responses from the focus group and follow-up interviews suggested that participants found participatory video to be a particularly engaging modality for self-expression. all participants found the project enjoyable, and, if given the opportunity, most were willing to participate in the future. furthermore, participants who withdrew from the study did so for reasons unrelated to the experience of the intervention. despite the strengths of this pilot study, it had some notable limitations. first, a standardized participatory video curriculum was not fully developed prior to implementation. each workshop was planned by the media facilitators, but participants noted that using more structured workshop goals and providing means of communicating between workshops would have improved the project. second, the final study sample was small and comprised of only male participants. while the focus group discussion and followup interviews were productive, contributions from participants of different backgrounds would have provided additional perspectives.33 third, people who have experienced psychosis were not directly involved in either designing the intervention or conducting the study. although the participatory video process was largely driven by the participants, it would have been particularly valuable to [qualitative research in medicine & healthcare 2022; 6:10438] [page 39] article no nco mm er cia l u se on ly have involved people with lived experience of psychosis throughout the entire research process.34 this pilot study demonstrated the potential value of participatory video in promoting narrative development in young people with psychotic disorders, which can help facilitate the recovery process. these findings justify future research on a larger scale to determine the full clinical utility of participatory video as a recovery-oriented intervention for early psychosis. references 1. heckers s, barch dm, bustillo j, et al. structure of the psychotic disorders classification in dsm-5. schizophr res 2013;150:11-4. 2. mcgrath jj, saha s, al-hamzawi ao, et al. age of onset and lifetime projected risk of psychotic experiences: crossnational data from the world mental health survey. schizophr bull 2016;42:933-41. 3. harrison g, hopper k, craig t, et al. recovery from psychotic illness: a 15and 25-year international follow-up study. br j psychiatry 2001;178:506-17. 4. álvarez-jiménez m, gleeson jf, henry lp, et al. road to full recovery: longitudinal relationship between symptomatic remission and psychosocial recovery in firstepisode psychosis over 7.5 years. psychol med 2012;42: 595-606. 5. leucht s, lasser r. the concepts of remission and recovery in schizophrenia. pharmacopsychiatry 2006;39:161-70. 6. emsley r, chiliza b, asmal l, lehloenya k. the concepts of remission and recovery in schizophrenia. curr opin psychiatry 2011;24:114-21. 7. lysaker ph, ringer j, maxwell c, et al. personal narratives and recovery from schizophrenia. schizophr res 2010;121:271-6. 8. windell d, norman rmg. a qualitative analysis of influences on recovery following a first episode of psychosis. int j soc psychiatry 2013;59:493-500. 9. roe d, davidson l. self and narrative in schizophrenia: time to author a new story. med humanit 2005;31:89-94. 10. raffard s, d’argembeau a, lardi c, et al. narrative identity in schizophrenia. conscious cogn 2010;19:328-40. 11. cavelti m, kvrgic s, beck em, et al. self-stigma and its relationship with insight, demoralization, and clinical outcome among people with schizophrenia spectrum disorders. compr psychiatry 2012;53:468-79. 12. cavelti m, rüsch n, vauth r. is living with psychosis demoralizing? insight, self-stigma, and clinical outcome among people with schizophrenia across 1 year. j nerv ment dis 2014;202:521-9. 13. roe d, hasson-ohayon i, derhi o, et al. talking about life and finding solutions to different hardships: a qualitative study on the impact of narrative enhancement and cognitive therapy on persons with serious mental illness. j nerv ment dis 2010;198:807-12. 14. roe d, hasson-ohayon i, mashiach-eizenberg m, et al. narrative enhancement and cognitive therapy (nect) effectiveness: a quasi-experimental study. j clin psychol 2014;70:303-12. 15. yanos pt, roe d, lysaker ph. narrative enhancement and cognitive therapy: a new group-based treatment for internalized stigma among persons with severe mental illness. int j group psychother 2011;61:576-95. 16. yanos pt, roe d, west ml, et al. group-based treatment for internalized stigma among persons with severe mental illness: findings from a randomized controlled trial. psychol serv 2012;9:248-58. 17. greben m, schweitzer rd, bargenquast r. mechanisms of change in psychotherapy for people diagnosed with schizophrenia: the role of narrative reflexivity in promoting recovery. aust j rehabil couns 2014;20:1-14. 18. shaw j, robertson c. participatory video: a practical approach to using video creatively in group development work. routledge; 1997. 19. luttrell w, restler v, fontaine c. youth video-making: selves and identities in dialogue. in: handbook of participatory video. altamira press; 2012:164-177. 20. yang k-h. reflexivity, participation, and video. in: handbook of participatory video. altamira press; 2012:100-114. 21. bery r. participatory video that empowers. in: participatory video: images that transform and empower. sage publications inc.; 2003:102-121. 22. van der ham aj, kupper f, bodewes a, broerse jew. stimulating client involvement and client-provider dialog through participatory video: deliberations on long-term care in a psychiatric hospital. patient educ couns 2013;91:44-49. 23. buchanan a, murray m. using participatory video to challenge the stigma of mental illness: a case study. int j ment health promot 2012;14:35-43. 24. macdougall ag, kukan s, price e, et al. participatory video as a novel recovery-oriented intervention in early psychosis: a pilot study. int j soc psychiatry 2020;66:780-784. 25. norman rmg, manchanda r. prevention and early intervention program for psychoses (pepp). healthc q 2016;18:37-41. 26. braun v, clarke v. using thematic analysis in psychology. qual res psychol 2006;3:77-101. 27. lysaker ph, vohs j, hillis jd, et al. poor insight into schizophrenia: contributing factors, consequences and emerging treatment approaches. expert rev neurother 2013;13:785-93. 28. chadwick pk. peer-professional first-person account: schizophrenia from the inside phenomenology and the integration of causes and meanings. schizophr bull 2007;33:166-73. 29. lysaker ph, buck kd, ringer j. the recovery of metacognitive capacity in schizophrenia across 32 months of individual psychotherapy: a case study. psychother res 2007;17:713-20. 30. lysaker ph, minor ks, lysaker jt, et al. metacognitive function and fragmentation in schizophrenia: relationship to cognition, self-experience and developing treatments. schizophr res cogn 2020;19:100142. 31. mcadams dp, mclean kc. narrative identity. curr dir psychol sci 2013;22:233-8. 32. bilandzic h, busselle r. narrative persuasion. in: sage handbook of persuasion: developments in theory and practice. sage publications inc.; 2013:200-219. 33. cohen mz, phillips jm, palos g. qualitative research with diverse populations. semin oncol nurs 2001;17:190-6. 34. happell b, roper c. consumer participation in mental health research: articulating a model to guide practice. australas psychiatry 2007;15:237-41. [page 40] [qualitative research in medicine & healthcare 2022; 6:10438] article no nco mm er cia l u se on ly layout 1 introduction this paper presents the results of qualitative research conducted among female seniors, exploring the relationship between the life course, hope and healthy aging in french-speaking switzerland. in this context, healthy aging refers not only to biological and medical aspects of aging, but includes phenomenological appreciations, functional definitions emphasizing autonomy, social participation and well-being, and aging as a process rather than a state.1 it focuses on the role of hope in learning lives, and its place in healthy aging as a critical factor in maintaining and improving quality of life among seniors. aforementioned concerns are increasingly relevant in the light of current health and social care policies that aim to foster healthy aging using an ecological approach.2 we analyzed hopeful aging life courses thematically, using senior life stories to orient citizen-centered inquiry by including in-depth narratives that articulate a variety of appreciative reflections, insights, and behavioral strategies.3 as we understand it, healthy aging is contingent upon sufficient environmental, financial, and social support being provided, as well as seniors’ physical ability to maintain a high quality of life, level of activity, and sense of independence.1 the availability of support networks assisting seniors vary in conjunction with local contexts.4 however, when local social support systems can be maintained, overall healthy aging is not just witnessed and modeled, but engendered within communities. this paradigm change transforms the image of seniors and their potential quality of life at the age of retirement. positive life course perceptions in relation to aging may enhance wellbeing and autonomy among seniors.5 how we talk about explorative healthy aging approaches fostering social innovation: thematizing life course narratives of older women participating in a documentary film susie riva-mossman,1 henk verloo2 1university of applied nursing sciences, lausanne; 2university of applied nursing sciences of western switzerland, sion, switzerland abstract the transformative process of investigating life stories and their impact on healthy aging has only recently been explored. the relationship between hope and individual healthy aging strategies is still an under-researched area. this study contributes to filling the knowledgeability gap. the authors examine senior stories of hope and the experience of self-determination and well-being. the study documents the social learning processes of older people as they narratively search for solutions and imagine a hopeful future of healthy aging. a group of four older women participated in a semi-structured filmed interview, questioned by an academic expert. healthy aging emerged as an important concern among all participants, confirming the need to actively learn how to age well. this exploratory research brought forth thematic clusters, orienting shared value solutions to demographic change. qualitative research methods reinforce lifelong, collaborative learning processes that not only produce scientific literature, but also put in place relational networks that can grow and endure over time,generating social innovation. the film documented the role of hope and resilience in healthy aging. correspondence: susie riva-mossman, university of applied nursing sciences, la source 30, avenue vinet, 1004 lausanne, switzerland. tel: +41.27.306.65.08. e-mail: su.riva@bluewin.ch acknowledgements: we thank our partners luc bergeron, nathalie nyffeler, elena muggelini, delphine roulet schwab and nataly viens python for their participation in this research project. we also thank the university of applied sciences western switzerland, ecal, lausanne, switzerland, the university of applied sciences western switzerland, school of business and engineering, yverdon, switzerland, and the university of applied sciences western switzerland, school of engineering and architecture, fribourg, switzerland for their contribution. conflict of interest: the authors declare no potential conflict of interest. funding: this research project was funded in part by gebert rüf stiftung and the university of applied sciences western switzerland school of nursing la source, lausanne, switzerland. the sponsors played no role in the design and conduct of the research project, nor in the preparation, review, or approval of the manuscript. contributions: sr-m, data acquisition; hv and sr-m, study concept, data analysis and interpretation, manuscript drafting and follow-up. key words: appreciative inquiry; community-based participatory research; epigenetics; grounded theory; healthy aging. received for publication: 25 july 2016. revision received: 12 october 2016. accepted for publication: 13 october 2016. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright s. riva-mossman and h. verloo, 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:14-22 doi:10.4081/qrmh.2017.6199 [page 14] [qualitative research in medicine & healthcare 2017; 1:6199] qualitative research in medicine & healthcare 2017; volume 1:14-22 no nco mm er cia l u se on ly aging as well as how we collectively perform aging have an effect on how we experience aging and retirement as an opportunity to do what we love to do. healthy aging has been conceptualized from a number of different perspectives. the biomedical perspective highlights the elimination of chronic illness risk factors and the promotion of optimal responses to illness.1a more holistic perspective encompasses epigenetics. we adopted the definition of epigenetics evoked by egger and colleagues as: the heritable changes in gene expression (active versus inactive genes) that does not involve changes to the underlying dna sequence which in turn affects how cells read the genes.6 epigenetic change is a regular and natural occurrence but can also be influenced by several factors including age, the environment/lifestyle, and disease state. epigenetic modifications can manifest as commonly as the manner in which cells terminally differentiate to end up as skin cells, liver cells, brain cells, etc. or, epigenetic change can have more damaging effects that can result in diseases like cancer. this perspective underscores the pertinence of various psychosocial dimensions, including individual dispositional factors, social support networks, and attention to structural and environmental inequalities (figure 1).7,8 whose definition of healthy aging should be considered? bartlett and peel propose the following definition: …to reflect the realities of aging, the most appropriate people to define what healthy aging means are seniors themselves.7 notably, senior health narratives can vary with age, sociocultural context and gender, and are influenced by a person’s perceived chances of healthy aging as well as the roles and representations associated with aging.9 barlett and peel mention that a number of consistent themes have emerged from recent studies in healthy aging: for the individual, healthy aging means having a sense of well-being, the capacity for independent activity, meaningful involvement, supportive environments and positive attitudes. being healthy is seen as having the resources for an everyday life that is satisfying to self and others.7 the subjective dimension is of particular importance as seniors may consider themselves as healthy within their own meaning systems irrespective of chronic illness.10 moreover, while physiological, functional, and psychosocial issues have been strongly featured in scientific literature, the role of the life course in healthy aging has only recently been explored.4 researchers have begun to draw out some of the implications of life course theory, life stories and healthy aging among seniors, and their impact on health-related outcomes.11 research that explores the notion of hope is also enabling seniors to experience health and social well-being.12 summing up, healthy aging is a highly fluid and complex issue, which requires further studies examining the relationship between hope, and individual aging strategies adopted by seniors. more research is needed in order to develop theoretical and empirical understanding of this under-researched area. the challenge of demographic change in europe makes healthy aging a research priority in democracies where birth rates are plummeting and immigration is politically controversial.13 context of the study older adults connected through embodied narratives of resilience, illustrating their know-how while facing the challenges of healthy aging. the senior living lab (sll) project focused on these senior voices.14 living lab methods were used to explore nutrition and mobility with four university faculties and local stakeholders in the frenchspeaking part of switzerland.15 the sll is in-formed by co-designed dialogical space, where participants meet and share strategies, finding ways to go forward while facing life events in relation to aging. our action research project gives recognition to women’s capacities to shape hopeful life scenarios.16 our learning community gathered participants in a joint action, coordinating citizen-centered services and cultural activities to enhance the meaningmaking process throughout the life course.17 the sll provides a platform, fostering the cross-pollination of projects with older adults referred to as seniors. it is a form of living laboratory promoting user-centered innovation.15 lifelong learning entails relational and dialogical connection capable of spawning hopeful narratives for women. the sll has offered a collaborative and interdisciplinary platform where aging men and women can envision growing old within a hopeful societal narrative, sharing their vision within their communities. this learning organization platform espouses an interdisciplinary approach to a societal challenge: demographic transition. the sll goal is to give value to user-centered innovation [qualitative research in medicine & healthcare 2017; 1:6199] [page 15] article figure 1. a compilation of epigenetic influences on humans. reproduced from open access paper: kanherkar rr, bhatia-dey n and csoka ab (2014). epigenetics across the human lifespan. front. cell. dev. biol. 2:49. doi:10.3389/fcell.2014. 00049. available from: http://journal.frontiersin.org/article/ 10.3389/fcell.2014.00049/full no nco mm er cia l u se on ly processes. the digital community of the sll reflects the activities that are being carried out in the field with the interested community partners, stakeholders, and researchers.18 the virtual platform enhances the relational potential of the living lab, communicating news, events, and publications.14 the sll sought to make hopeful healthy aging a collaborative endeavor and a community performance. our innovative methods contributed to creating shared value orienting joint actions.19 achieving social innovation through narrative transformation this quest for meaningful lives is a central mission in the ongoing process, engendering social innovation by articulating hopeful narratives that can foster embodied wellness. transcending stories is part of the narrative process that challenges to transform the complexities in a storyline, pointing to larger human and cosmic stories.20 randall and mckim declare: given this progression from affirmation to transformation, reading brings us to the end, then, to a new mode of being in the world.21 new worlds are created through our relationships with communities. writing our lives is something we do in conjunction with others. this underpins mcnamee and gergen’s statement: we shape the world in which we live, thereby creating our own ‘reality’ within a context of a community of others. the boundaries of our narratives are constructed through political, economic, social and cultural constraints and potentials, with our choice of narratives not limitless, but existing within prescribed contexts.22 the voices of older women set the course for social innovation by describing their perception of life escaping a hopeful future. their insights are guiding the interdisciplinary research team on the trail of innovation. the narratives shared in the documentary are a central part of the needs assessment phase, documenting perceptions of healthy aging. at first, the sll co-created methods that led to joint action in the social designing of environments and services facilitating senior autonomy. framework of the exploratory research this exploratory study uses qualitative research methods to better understand epigenetic factors in healthy aging. recent research asserts that epigenetic changes occur with age.23advances in the field of epigenetics have increased our understanding of the association between disease states and methylation patterns. epigenetic changes occur with age but also the environment as well as perception can contribute to the diversity in individual epigenetic changes. finally, altered epigenetic patterns could play a role in delaying age-associated diseases and improve life expectancy.24 the objective of our studywas to explore senior stories of hope, documenting social learning processes of older people as they search for solutions and imagine a hopeful, healthy aging future while narrating the subjective experience of self-determination, independence and wellbeing. informative themes emerged from the accounts and experiences of individuals. we addressed two specific research questions: i) how do female seniors articulate hope in the concept of healthy aging? ii) how do resilience strategies support their efforts towards healthy aging? resilience is understood to be the ability to overcome challenges that were faced by the women at the retirement age. resilience strategies refers to the manner in which the women found creative solutions, overcoming problems that presented themselves while growing older.25 materials and methods grounded theory underpinned the investigation process.26 image was used to frame the interviews. filmed conversations captured the narratives in a documentary later shown within a community setting. appreciative inquiry oriented the questioning process. community based participatory research (cbpr) methods, involving seniors in tandem with university researchers, provided a foundation for citizen-centered inquiry.27 finally, social constructionist approaches offered a theoretical backdrop where dialogical space was co-created engendering a field of research and a space for community performance.28 filmed interviews were employed, creating a film documentary. the film shared stories of hope with the local public. the main intent was to show the women’s resilience strategies. filming was favored over transcribing the interviews in an effort to reach the greater public. research procedure, data collection process, and participative analysis four senior women from the sll including a professor and member of via mulieris, a regional association dedicated to gathering women’s stories, were invited to participate in this exploratory study. all participants gave a written informed consent allowing their filmed interview to be used and were free to withdraw at any time. an interview framework was developed from knowledge of the literature on the life course, health and aging, life stories, resilience and hope. but most of all, the interviews were inspired by the informal conversations that were shared during the ethnographic research sessions in the field. this study employs filmed narratives to gather data about older adults in valais. the women shared their experience of growing old, explaining how they continue to participate within their social networks. the place of hope in learning lives orients the questioning process, with stories that offer images of potential and hope.28 the narrative approach sought to include senior perceptions in tandem with professional researchers, co-constructing the investigative processes carried out in the field. the initial sll framework used needs assessment, [page 16] [qualitative research in medicine & healthcare 2017; 1:6199] article no nco mm er cia l u se on ly leading to conversations that ultimately explored resilient life stories. to accomplish this exploratory research, an interdisciplinary approach was chosen favoring an epigenetic vision of aging. a semi-structured questionnaire was created to provide a canvas for the interviews and was organized around five key topic areas to elicit conversations during the filming of each participant: the meaning-making process, lifelong learning and autonomy, social and community participation, health and well-being, and technologies and other social support for aging-in-place. the in-depth interviews explored seniors’ perceptions through collaborative conversations. a sll researcher and senior film producer edited the film content. together they spliced and mixed the film content, co-creating the film documentary and reinforcing the communication of the guiding themes. the senior participants viewed the documentary with the sll researcher during a screening organized to ascertain the major themes expressed in the filmed interviews. the narratives in-formed the thematic clusters that were identified. in this way, the volunteer seniors were participants alongside the researcher, highlighting the cbpr approach in this project. senior knowledgeability informed the investigation phases alongside the university team. the interviews give value to personal narratives of hope when facing the promise of increased longevity. the stories contribute to the swiss, french-speaking region’s efforts to imagine a bright future for older adults. the via mulieris association and the cantonal committee on ethics in research involving humans in valais both gave their approval for the study. participative analysis following the data collection process, interviewees and participants at the avant-première collaborated in the analysis of the film documentary. this meaning-making process combined various world café techniques,29 allowing participants to feel free to express their ideas in a collaborative co-construction process. the avant-première event used the film to create reflexive community space, enhancing the knowledgeability of the participants. volunteers at the event filled out a questionnaire that was later analyzed. the thematic content provided even more depth to the film’s narratives. coherent insights took form through the conversations and questionnaires, where shared emic perceptions brought forth theories pertaining to healthy aging. results healthy aging emerged as an important concern among all film documentary participants; women between 61 and 75 years old. all participants had a higher education level and socio-economic status. their notions of healthy aging were diverse and involved functional, psychological, social and physical dimensions. in particular and demonstrated by baltes and colleagues, participants saw their personal control, or the ability to make their own choices, as integral to a healthy lifestyle.30 healthy aging was seen as something that older people could learn, do or work towards, highlighting a sense of agency in old age. women evoked emergent themes in relation to hope’s role in supporting or constraining the process of healthy aging. they found their own relevant form of resilience while facing challenges at the age of retirement. their stories demonstrate how they were able to perform learning lives capable of adapting and adjusting to life-course changes. the group analysis of the film content at the screening, followed by the première event, created an ever-growing space of reflexivity focused on hopeful healthy aging. in reference to mcintyre’s description of narratives that are much like recipes that have to be put into storied sequences if they are to make sense, the women contextualized their personal stories of hope, explaining the ingredients incorporated into the batter of their retirement cake.31,32 the avant-première provided a community event bringing together the various stakeholders. the city’s social services, the canton’s health promotion platform for 60+, the president of the via mulieris association, as well as the editor of a regional magazine dedicated to seniors, participated in a round table discussion in relation to the film, adding to the regional meaning-making process. because of confidentiality issues, we have chosen not to develop in depth the personal stories of the women participants. we have favored using their quotes from the film that share glimpses into their life stories. to provide a backdrop for their narratives, we have included the following brief vignettes of each senior participant: one woman was a journalist that became a sculptor; she invites us to her workshop in the film. another participant was in banking, she explains the importance of financial planning; she created an association to integrate women’s voices into local historical accounts motivated by the bicentennial year celebration. still another participant was the head of a nursing home and used her many care giving skills to take care of her mother upon retirement. finally, another woman’s testimony explains how her work in human resources motivated her to train as a mediator, giving value to the meaning-making process and providing new skills to use as a volunteer for battered women. the fifth contributor, a sociology professor specialized in aging, offered a scientific narrative based on her research. emerging themes the themes that emerged from the narrative content enriched the reflexive space by incorporating individual insights and connecting them to emerging patterns that ran throughout the five narratives documented in the film. the [qualitative research in medicine & healthcare 2017; 1:6199] [page 17] article no nco mm er cia l u se on ly group analytical work allowed the participants to identify patterns of coherence, transcribing their understanding of the narrative’s meaning into an even more explicit written form on note cards. participants evoked several substantial contributing components, creating shared value in relation to healthy aging. shared value refers to the creation of social and economic value and advancing social progress.19 they mentioned transmission and the sharing of knowledge and life experiences, respect for personal rights and the freedom to choose, and reciprocity understood as a healthy balance between giving and receiving. the cycle of life that allows us to give back what we have received. the aforementioned themes were expressed as core components of hopeful healthy aging. imagining a hopeful future and sharing messages of hope with the greater community, by giving testimony to the opportunities retirement has to offer, was the central mission of the film process. being able to give voice to senior perceptions is capital, what is essential is the ability to communicate.33 moreover, diverse meaning-making processes were beneficial resilience strategies, for example: creating art, developing associations, movies, and serenity-seeking pathways cultivating well-being. a participant highlighted, i love challenges!another woman explained while sculpting in her workshop, the need for beauty is important to me. i am sculpting a body. it is a form of search for the sacred, beauty, and perfection. participants also evoked gratitude and the importance of being thankful for the professional and family relationships that make life meaningful. one spoke of her daughter who has special needs stemming from a medical error occurring at her birth saying, my experience with my daughter was a key element in my life. her admiration for her daughter’s resiliency was a driving force in her own personal development. for participants, lifelong learning included the ability to find the necessary resources needed to cope with changing life circumstances, resiliently moving forward. by developing self-efficacy, they were able to recover from hardship, continuously adapting to new situations throughout the life course. one participant spoke of growing older but better, describing, the apprenticeship of growing older. while another woman accentuated the importance of maintaining relational links. their testimonies correspond with hammond’s research that documents the link between lifelong learning and emotional resilience.34 the economic, social, and relational contributions after retirement were perceived as critical success points in healthy aging, inspiring community agency focused on imaging new ways of living together in a society with increasing percentages of people over 60 years old, an evolving society where today’s women can, dare to say their mind. the sociology professor evoked the possibility of imaging new social forms when facing vulnerability underscoring, a potential for social innovation. she also explained, older people continue to tell the family story, transmitting it to grandchildren. a core theme was financial planning, using state and personal retirement options to organize and plan for the future, funding a new phase of life. one woman stated, loans are difficult to obtain after retirement. participants recognized the important social and financial resources of retirees: gifts, babysitting, community contributions through volunteer work and the growing silver economy. however one woman commented, at 60 you get a label. she went on to explain, we must think of our retirement funds because we have interruptions in our career with children. she also highlighted the adverse effects of divorce on retirement savings because of salary inequalities and the time women often give to their family, reducing their own financial savings. participants acclaimed the effectiveness of the medical, social and sanitary improvements in western society that have engendered current standards of quality of life where elders can live well longer. pointing to architectural changes favoring aging at home, one woman proclaimed, the creation of home care is a revolution. highlighting the importance of social security she said, we are retired with a revenue. the challenge of life escaping was seen as a noble human endeavor. the gift of thirty added years to the lifespan was understood as an opportunity. resilience strategies allowed the women to be happy, transcending their misfortunes. growing older was correlated with a changing relationship to time, slowing down and appreciating the time one has, the seasons, and the natural rhythms that are modified with age. one participant said, i thought i would have more time. while another commented how notions of time are transformed at the retirement age. although participants spoke of mourning past deceptions, they explained how grieving paved the way to satisfaction with everyday life: free to live fully in the present. i never would have imagined so much harmony in this stage of life was one woman’s observation. most participants found strength and support in community; coming together with renewed vitality. they spoke of giving more time to contemplation and getting rid of all that is superfluous. one woman declared, i didn’t want to have an abrupt change at my retirement, explaining why she began classes to become a sophrologist. she told how difficult it can be to suddenly leave the work environment and therefore important to question, what is my self worth and what is my role on earth?participants expressed how an improved societal vision of care buttressed the current possibilities for healthy aging with the, capacity to make decisions. the evolution toward a more interdisciplinary approach to care was also perceived as engendering systemic improvements. envisioning health and aging in more ecological and environmental terms, in keeping with an epigenetic vision of healthy aging, was acclaimed as, a more positive vision. still, one woman warned against, the denial of growing older and death. all participants were in favor of innovative technologies and consider these developments as beneficial, bringing advances in communication, smart [page 18] [qualitative research in medicine & healthcare 2017; 1:6199] article no nco mm er cia l u se on ly living, commercial services, as well as holistic care improvements in order to, adapt, continually adapt. however, one participant asked, what is the impact? when referring to new technologies and social innovation. during the avant-première event, 18 participants filled out a questionnaire. most participants were female (16/18), between 45 and 88 years of age. all but two considered hope an important factor in healthy aging. the participant’s perceptions of the film content confirmed the importance of actively learning how to age well. healthy aging was seen as a responsibility that communities and individuals must jointly cultivate. retirement was perceived as a new phase in life that requires preparation. gaining knowledge about healthy lifestyle choices as well as financial planning were both mentioned, as was the necessity to personally engage in the continuous meaningmaking process through creative endeavors, asking about the meaning of life. the audience participants inquired about our choice of interviewees in our initial film and exploratory research. in the group discussion as well as in the questionnaire, our methodological approach was seen as an example that could be extended to other categories of seniors. participants thought that including other groups in the inquiry process would enrich the development of theme clusters. suggestions were made to include men, frail and vulnerable seniors, as well as less advantaged social and economic groups of elders. the event and questionnaire served to orient our future research projects, confirming the relevance of our methods; incorporating documentary and social change processes to better understand the place of hope in researching learning lives. discussion a hopeful healthy aging model was configured using film documentary. the film project provided a reflexive space during the interview process, during the senior group analytical process, culminating at the avant-première event where all the stakeholders participated in the snowballing conversation. citizens and stakeholders joined in a generative process that concluded with a collaborative performance envisioning a bright future. new forms of relational welfare can be co-constructed in collaborative practices that give rise to social transformation processes. using testimonials in filmmaking processes to elicit insights and conversations in relation to hopeful healthy aging is in itself a form of methodological innovation. this exploratory research brought forth thematic clusters, orienting shared value solutions to demographic change. the social innovation outcomes are difficult to estimate, however, the reflexive dialogical process that the sll initiated has given rise to increased knowledgeability within the network of stakeholders. the themes that emerged were configured into clusters of [qualitative research in medicine & healthcare 2017; 1:6199] [page 19] article figure 2. the hopeful health-aging model. no nco mm er cia l u se on ly meaning that can serve as a basis for a hopeful health model (figure 2). new paradigms: epigenetics and the health model most people received a gift of thirty years added on to their lifespan. this gift from our ancestors can be appreciated and used to the fullest. the new epigenetic paradigm and research area stresses how environment and perceptions can influence the expression of dna.35 this understanding underscores the importance of health prevention that begins at conception and must be sustained throughout the life course.36 healthy life choices are understood to influence epigenetic expressions. non-genetic regulation of aging is gaining scientific attention in an attempt to better understand the potential reversibility of epigenetic changes and the plasticity that may be harnessed when approaching aging and age-related diseases from a new angle: the main appeal of understanding the environmental non-genetic regulation of aging is to open new avenues for actionable interventions that could benefit the diseases of age.37 lifelong learning offers older people the opportunity to adjust their lifestyles by integrating new research on healthy living. participants vocalized the need to shift our focus from a disease model to a health model (figure 2).38 life long learning bandura’s work on self-efficacy and the important influence of positive models underscores the potential within a learning filmcapable of eliciting positive behavior in viewers: seeing people similar to oneself succeed by perseverant effort raises observers’ beliefs in their own abilities.39 collective efficacy is necessary when facing societal challenges like demographic change. there is an important transition from traditional research methods that mirror and describe toward methods that foster social innovation.40 research design has the potential of engendering social transformation.28 our choice of data collection methods mediates individual experience with communal responsibility.41as more and more citizens become aware of the demographic transformation and the challenge caring for a growing aging population presents, interdisciplinary actions will need to be coordinated to meet future needs. this should not be limited to social and healthcare professionals, but municipalities and communities can begin imaging ways to go on together by anticipating reinforced retirement programs, educational trajectories, healthcare coordination, and life-course prevention policies. sensitizing the greater public is an important aspect of the sll’s mission. research methods can reinforce lifelong, collaborative learning processes that not only produce scientific literature, but also put in place relational networks that grow and endure over time. the relational welfare engendered during the research phase gave rise to new forms of social relating, inspiring new social designs, orienting individual choices.42 narrating hopeful life-courses our film celebrates hopeful, human narratives of aging. in a narrative or ritual manner, stories and rites symbolize a process of construction of this identity. they direct the roles to be played.43 storying can therefore be seen as an activity that can influence how we grow old. as the senior women modeled resilient and hopeful lives on camera, they were speaking to a potential audience, hopefully activating community collaborations capable of informing future aging processes. organizations and associations working on issues in relation to healthy aging should be encouraged to participate in community performance and social orchestration: and, overall, the story takes on meaning that previously we were unable to predict: indeed, meaning we may never fully fathom. in the end, the story points beyond itself.44 ethical elder care requires theoretical frameworks capable of integrating practice informed by patient and citizen needs. interdisciplinary research teams including the nursing sciences can use methods that incorporate aesthetics to ascertain the sacred while facing aging, illness and death. the aesthetic approach incorporates the art and act of nursing. ethical knowing, which constitutes the ethics of nursing, is generated by means of ethical inquiries that are focused on identification and analysis of the beliefs and values held by individuals and groups and the clarification of those beliefs and values.45 watson’s theoretical approach values a culture of care.46 she reserves an important place for aesthetics within her theoretical and philosophical framework, illustrating how artistic approaches to healing are capable of integrating the sacred. as one of our participants declared, the end of life evokes an immense respecthighlighting the role of, creativity and innovation for well-being. this scholarship endeavors to set a new life course using qualitative methods.47 holistic methods can contribute to designing care for our elderly people and our planet while creating shared value. our planet’s elders are voicing the need for a culture of care and planetary wellness. their wisdom can orient our care pathways when given dialogical and participatory space. this space, configured into our research models, allows integral research approaches to harvest social innovation in the narrative field of inquiry. conclusions the sll has brought together stakeholders that engage in interdisciplinary research with collaborative and transformative methods. together participants crafted a platform responsive to demographic change. the sll is [page 20] [qualitative research in medicine & healthcare 2017; 1:6199] article no nco mm er cia l u se on ly driven by needs assessment methods allowing seniors in tandem with interdisciplinary researchers to perform social innovation, proposing new forms of data collection in an attempt to better understand healthy aging strategies. the multifaceted ways in which older people socially construct healthy aging have both practice and policy implications. at a practice level, this complexity needs to be more fully understood by the various professionals who provide daily care and support to older adults living at home, accentuating the importance of inter-professional collaboration. heterogeneous data collection methods contribute by creating a more holistic and ecological vision of relational welfare. healthy aging strategies dovetail with epigenetic patterns, in support of healthy aging. equally, social and healthcare practitioners need to be aware of the important role that hope and resilience play in healthy aging. finally, at a policy level, where macro socio-economic factors are considered, the social determinants of health should be recognized as having important implications that ultimately affect the health of older adults and the viability of their communities. references 1. hansen-kyle l. a concept analysis of healthy ageing. nurs forum 2005;40:45-57. 2. sixsmith a, sixsmith j. ageing in place in the united kingdom. ageing int 2008;32:219-35. 3. löfqvist c, granborn m, himmelsbach i, et al. voices on relocation and ageing in place in very old age a complex and ambivalent and matter. gerontologist 2013;53:919-27. 4. cutchin mp. the process of mediated ageing-in-place: a theortically and empirically based model. soc sci med 2003; 57:1077-90. 5. rosel n. aging in place: knowing where you are. int j aging hum dev 2003;57:77-90. 6. egger g, liang g, aparicio a, jones pa. epigenetics in human disease and prospects for epigenetic therapy. nature 2004;429:457-63. 7. bartlett h, peel n. healthy ageing in the community. in: andrews gpd, ed. healthy ageing in the community. london: routledge; 2005. pp 98-109. 8. kanherkar rr, bhatia-dey n, csoka ab. epigenetics across the human lifespan. front cell dev biol 2014;2:49. 9. kleinman a. the illness narratives: suffering, healing and the human condition. new york: basic books, inc.; 1990. 10. bryant l, corbett k, kutner j. in their own words: a model of healthy ageing. soc sci med 2000;53:927-41. 11. oswald f, wahl hw, schilling o, et al. relationship between housing and healthy aging in very old age. gerontologist 2007;47:96-107. 12. wiles jl. home as a new site of health care consumption. london: routledge; 2005. 13. who. guide mondial des villes amies des aines. 2007 available from: http://www.who.int/ageing/publications/ guide_mondial_des_villes_amies_des_aines.pdf 14. lab sl. senior living lab lausanne: hes-so; 2015. available from: www.seniorlivinglab.ch 15. riva-mossman s, kampel t, cohen c, verloo h. the senior living lab: an example of nursing leadership. clin interv aging 2016;11:255-63. 16. via mulieris. via mulieris sion 2016. available from: http://www.via-mulieris.ch/ 17. ståhlbröst a, holst m. the living lab methodology handbook. luleå: luleå university; 2012. 18. wenger e, white n, smith jd. digital habitats: stewarding technology for communities. portland, or: cpsquare publications; 2009. 19. porter me, kramer mr. creating shared value. harvard bus rev 2011;89:1-2. 20. randall wl. transcending our stories: a narrative perspective on spirituality in later life. crit soc work 2009;10:31-46. 21. randall wl, mckim e. reading our lives: the poetics of growing old. new york: oxford scholarship online; 2008. 22. mcnamee s, gergen k. therapy as social 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optimization with compensation. in: baltes pb, baltes mm, eds. successful aging: perspectives from the behavioral sciences. new york: cambridge university press; 1990. pp 1-34. 31. macintyre a. after virtue: a&c black; 2013. 32. gergen kj. narrative, moral identity, and historical consciousness. in: straub j ed. narrative, identity and historical consciousness. new york: berghahn; 2005. pp 99-119. 33. riva mossman sk. creating dialogical space in generative research using professional’s narratives. nova perspect sistêmica 2015;52:33-51. 34. hammond c. impacts of lifelong learning upon emotional resilience, psychological and mental health: fieldwork evidence. oxford rev ed 2004;30:551-68. 35. ashapkin vv, kutueva li, vanyushin bf. aging epigenetics: accumulation of errors or realization of a specific program? biochem moscow 2015;80:1406-17. 36. beerman i, rossi dj. epigenetic control of stem cell potential during homeostasis, aging, and disease. cell stem cell 2015;16:613-25. 37. brunet a, berger sl. epigenetics of aging and aging-related disease. j gerontol a biol sci med sci 2014;69:s17-20. 38. karlic h, baurek p. epigenetics and the power of art. clin epigenet 2011;2:279. 39. bandura a. an agentic perspective on positive psychology. [qualitative research in medicine & healthcare 2017; 1:6199] [page 21] article no nco mm er cia l u se on ly in: lopez sj ed. positive psychology: expecting the best in people. vol 1. new york: praeger; 2008. pp 167-96. 40. gergen kj. from mirroring to world�making: research as future forming. j theory soc behav 2014. 41. mcnamee s, gergen kj. relational responsibility: resources for sustainable dialogue. thousand oaks, ca: sage publications; 1998. 42. cottam h. relational welfare. soundings 2011;48:134-44. 43. brandt p-y, fournier c-a, mohr s. religion and spirituality in psychiatry. cambridge: cambridge university press; 2009. pp 158-72. 44. randall wl, mckim ae. reading our lives the poetics of growing old. new york: oxford university press; 2008. 45. fawcett j, watson j, neumann b, et al. on nursing theories and evidence. philosophical and theoretical perspectives for advanced nursing practice. burlington, ma: jones and bartlett learning; 2013. 46. watson j. theory of human caring. available from: http:// www.watsoncaringscience.org/images/features/library/the ory%20of%20human%20caring_website.pdf 47. reeder fm. what will count as evidence in the year 2050? in: cody wk ed. philosophical and theoretical perspectives for advanced nursing practice. burlington, ma: jones and bartlett learning; 2013. [page 22] [qualitative research in medicine & healthcare 2017; 1:6199] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2017; 1:6391] [page 29] introduction the need for improved health care for people with disabilities has been recognized both nationally and internationally. there is ample evidence of health care disparities experienced by people with disabilities,1,2 making them the largest under-served group in the united states and, by some estimates, including close to one-in-five americans.3-5 health authorities, including the us surgeon general, the world health organization, the united nations, and the world bank, have called for improvements. for example, one of the public health goals of the united states for people with disabilities, stated in healthy people 2020, is reducing barriers to participating in community activities and within health care settings.4 but in 2005, the surgeon general pointedly identified the attitudes of health care providers as a critical barrier to the health care of people with disabilnurturing constructive change that works: a critical theory-informed model for transforming health service psychologists’ views of people with disabilities roy o. gathercoal,1 kathleen a. gathercoal,2 winston seegobin,2 sarah hadley1 1independent scholar; 2graduate department of clinical psychology, george fox university, newberg, or, usa abstract we have been developing and refining a disability training exercise for health service psychologists that is ever more effective at encouraging lasting change in the way students regard disabilities and the people who live with those disabilities. although research suggests that simulation exercises tend to be ineffective at creating long-term attitude change in participants, quantitative and qualitative results indicate our exercise, composed of a simulation followed by debriefing and reflection, helps professionals better understand some of the challenges people with disabilities daily face, and how those challenges can affect their well being. we found this combination is more likely to yield long-term changes than any of these approaches alone. this paper is not principally the description of a pedagogical technique, but instead is an examination of how the combination of simulation, debriefing, and reflective journaling may challenge taken-for-granted assumptions about disabilities, e.g., that disabilities transform individuals into a different kind of human being (with either superhuman powers or as object of pity) instead of seeing these individuals as ordinary peopl e facing extraordinary, and often society-created obstacles. one frequent call of critical theorists is to challenge those things we take for granted. social and cultural structures create specific viewpoints and thus problematizing the apparent is necessary for understanding of, and emancipation from, potentially oppressive social structures. inspired by this call to render the taken-for-granted a s problematic, the exercise we describe creates inversions of performer/audience, professional/student, and scientist/researcher positions. in each of these inversions, the role of the objective observer is denied and the student is invited to engage in his or her own evaluative and potentially transformative experience. through each of these inversions, different realities can be more readily utilize d by thoughtful students to render problematic some of the dominant views about people with disabilities. to make this case, we utilize both qualitative and quantitative methods. the students’ own words, captured in their journals before and after the exercise, are examined in comparison with program goals and features. the weight of the evidence is impressive, indicating that the combination of simulation, debriefing and journaling reflection are effective at creating a space in which change of attitudes does occur. correspondence: roy o. gathercoal, 2504 haworth avenue, newberg, or 97132, usa. tel: +1.503.537.1162. e-mail: rgathercoal@frontier.com key words: disability; health service psychology; attitude change; critical theory; pedagogy. contributions: rog made substantial contributions to planning and executing the pedagogical intervention, data collection, drafting and revising the article, and approving the final version to be published; kag made substantial contributions to planning and executing the pedagogical intervention, data analysis and interpretation, drafting and revising the article, and approving the final version to be published; ws made substantial contributions to planning and executing the pedagogical intervention, data collection and interpretation, drafting the article, and approving the final version to be published; sh made substantial contributions to data analysis and interpretation, conceptualizing the article, and approving the final version to be published. conflict of interest: the authors declare no potential conflict of interest. received for publication: 15 november 2016. revision received: 9 january 2017. accepted for publication: 11 january 2017. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright r.o. gathercoal et al., 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:29-38 doi:10.4081/qrmh.2017.6391 qualitative research in medicine & healthcare 2017; volume 1:29-38 no nco mm er cia l u se on ly ities.6 according to kirschner and curry, the failure of medical education programs to teach concepts of disability was identified as a root cause, and educators were encouraged to ‘increase knowledge among health care professionals and provide them with tools to screen, diagnose, and treat the whole person with a disability with dignity’.7 as noted in the american psychological association’s guidelines for assessment of and intervention with persons with disabilities, psychologists are uniquely positioned to help individuals with disabilities become self-determining citizens of our diverse society.8 however, few psychologists receive formal or informal training about disabilities. vogel, mcminn, peterson and gathercoal surveyed students, interns, faculty, and training directors at apa-accredited doctoral programs and pre-doctoral internships for health service psychologists regarding the adequacy of diversity training, including disabilities, within their programs. results indicated a clear hierarchy in coverage of topics with least attention given to the dimensions of diversity pertaining to disabilities, age, religion, and spirituality.9 recent curriculum reviews indicate there are fewer courses, both in the undergraduate and the graduate psychology curriculum, about disabilities and fewer courses in which disabilities are covered in depth than in the past.10,11 andrews and lund estimate that only between 3 and 8% of health service psychologists are people with disabilities,12 and as a result, few psychologists learn about disabilities informally by observing peers or mentors who have disabilities. so the challenge to develop or discover better ways of helping our students to be more effective health care professionals serving people with disabilities continues. shakespeare and kleine (2015) recently summarized the pedagogical approaches in 48 professional papers that described and assessed teaching interventions to improve health care providers’ knowledge and attitudes regarding people with disabilities.13 they created a taxonomy based on the pedagogical delivery method and linked those with outcomes such as attitude change, increased knowledge, and improved comfort and communication with people with disabilities. specifically, they reported that traditional lectures (33 papers) were relatively ineffective; encounters with standardized patients (23 papers) had more impact on knowledge and attitudes than lecture alone; visits to community facilities serving people with disabilities (9 papers) led to improved interactions with people with disabilities; simulations (4 papers) may have lead to distorted understandings of people with disabilities e.g. feelings of pity; interacting with people with disabilities or their family members (15 papers) was memorable and led to improved attitudes; caring for a person with disabilities e.g. for several weeks in a clinical setting (9 papers) was very effective in changing attitudes and the change was generalizable. shakespeare and kleine concluded, across the studies, the most positive evaluations were of opportunities to meet disabled or older people, associated with positive change in attitudes.13 our collaborative work with people with disabilities has evolved over the past ten years. in 2006, kg, a faculty member in a graduate department of clinical psychology, and rg, her husband, an organization communications scholar and a person with a disability, developed a disability simulation and didactic debriefing exercise for first-year graduate students in a lifespan development course. as kg’s course load changed and ws joined the faculty, the exercise moved from lifespan development to multicultural psychotherapy, a secondyear course. ws and rg continued to offer the exercise, modifying it to increase the time and emphasis on the didactic debriefing and adding reflective journaling. through these changes we have witnessed the improving effectiveness of the presentation so this simulation, with debriefing presentation and reflective journaling together, is more effective at encouraging these health service psychologists to take positive, lifelong steps to make themselves more effective advocates and helpers of people with disabilities than in previous years, and the combination of the elements are more effective than any of the components alone. critical theory is usually identified as encompassing the various themes, practices and trajectories identified in or developed from the propositions of the frankfurt institute for social research from about 1930 through the present.14 whatever the focus of a particular approach to critical theory, at the heart is the idea that things we take for granted can be viewed in different ways, and that this process of problematizing the apparent is necessary for emancipation from potentially oppressive social structures or cultural trends and artifacts.15 inspired by critical theory’s frequent call to render the taken-for-granted as problematic, the exercise creates inversions of performer/audience, professional/ student and scientist/researcher positions. in each of these inversions, the role of the objective observer is denied and the student is invited to engage in his or her own evaluative and potentially transformative experience. thus through each of these inversions, different realities can be more readily seen and utilized by thoughtful students to render problematic some of the dominant societal views about people with disabilities. during the simulation part of the exercise, students perform routine tasks of the sort they perform many times each day, e.g., placing an order at the student cafeteria; finding a book at the library; attending a lecture in a university classroom; and using the toilet facilities in the academic buildings; as well as moving from one task to the next. although all of the tasks are quite mundane, completing them is of course a set-up. as a person with [page 30] [qualitative research in medicine & healthcare 2017; 1:6391] article no nco mm er cia l u se on ly a mobility disability, rg knows how difficult these ordinary tasks can be; these tasks are selected to highlight both some that cannot be completed due to architectural barriers and some which are much easier than they otherwise might be because of well-designed and maintained facilities. in the cases in which the tasks cannot be completed without outside help (fellow group members are not allowed to assist one another), students face the same kind of ambiguity faced by people with disabilities every day. they find themselves asking, do we ask for help from these strangers? whom do we ask? what do we think they think of us for intruding into their lives with our request? this experience of the ordinary as novel and the typically-mundane task as overwhelming is intended to temporarily alienate the students from what would otherwise be their ordinary daily experiences. critical theory would suggest it is this inversion of their ordinary daily experience that proves so powerful in the simulation component. instead of engaging in races, contests or uniquely constructed complex tasks highlighting the novelty of using assistive technology, as is the case in some other simulations, students are asked to do the sorts of things they would otherwise do, mundane takenfor-granted student tasks. as a result, students perceive more clearly how challenging it would be to live ordinary life with a disability and the extent to which assistive technology can fail to compensate for the disability. immediately following this heightened emotional experience of feeling anxious and helpless and dealing with new ambiguity, the students enter the debriefing phase of the exercise and are presented with someone who does indeed navigate each business day in a wheelchair. now the person with the disability is the expert. he is the person with the valuable experience, rather than a client needing the help of able-bodied, charitable others. the person with the disability is transformed from an objectified other, someone to be watched or studied as they attempt to live, to a model and expert encompassing many of the attributes to which these students aspire: a deep base of personal experience with exactly the types of challenges these students have just experienced and credentialed professional status. this inversion, critical theory suggests, sets the stage for an entirely different conception of people with disabilities by rendering problematic a commonly held view, one based on respect and professional expectation rather than expectation of incompetence. an additional inversion happens as a result of the switching of the roles of professional/amateur, performer/audience, and scientist/researcher subject in the debriefing phase. the presenting individual is not a visitor to the professional world which these students represent, but is a credentialed professional, a teacher and resource, a certified member of the professional world. there is no place for pity, and thus no immediate outlet for the heightened emotional states just experienced as a result of the simulation. this is regular ordinary life the students are told, not something extraordinary. thus the locus of the inquiry shifts subtly to being about the student’s individual measuring up to the requirements of being a professional as a person with disability. instead of assuming the role as either a novelty super hero or as a pitied victim the presentation places the student in the easily assumable role of student/professional-to-be going about ordinary life. to some extent, the student takes on the role of the disabled professional. the focus of the debriefing then creates another inversion as the student’s move from being a person experiencing a simulation to being a professional tasked with being an effective health service provider for people with disabilities. the life-task facing each student is not to complete these mundane tasks with limited capabilities, but is rather to be an effective helper to others faced with their own (possibly unknown) tasks. part of this transformation is accomplished through rg’s discussion with the students of life-with-disability as a paradox, such that: i) the person with a disability is human and like other humans in every way except for the disability, yet ii) the disability is a limiter of full participation in society and affects every part of who that individual becomes as they live their lives. the disability simultaneously is not seen as affecting the person’s basic humanity, for as participants the students retained their humanity and life context, and yet the disability affects every part of their experience of being human. in the reflection phase of the experience, the focus turns away from describing the challenges faced by people with disabilities to discussing and journaling about how will you be effective at your profession when your client is a person with a disability? the roles of scientist/discoverer and research subject invert from one in which the students are the ones observing a life with novel disability to one in which they find themselves questioning their own readiness to be effective health care professionals ‒ the course of study to which they are already fully committed. the subject of this exercise of inquiry shifts from being the person over there who is different from everyone else to being the students themselves, as they contemplate their coming responsibilities to be effective health care providers. in each of these inversions the role of the objective observer is denied and the student is invited to engage in his or her own evaluative and potentially transformative experience as a collectively created and defined subject. given the heightened emotional experience of limited success in navigating a through the looking glass world in which the ordinary is rendered strange and that which has always been assumed is now questioned, students are invited into the intellectual/relational experience of seeing the person with disabilities not as an un-empowered object of observation and pity, but [qualitative research in medicine & healthcare 2017; 1:6391] [page 31] article no nco mm er cia l u se on ly rather as someone who holds the desirable position as recognized, credentialed professional and teacher. over the years of revising and refining this exercise, these inversions have been useful both in challenging the attitudes of students and as well as recruiting young allies in the long struggle to (re)create an accepted productive place for people with disabilities as human beings within the normal variance of human experience and capabilities rather than as others. this is the larger battle and it cannot be won without effective advocates willing to put their professional credentials behind their assertions that people with disabilities are in fact people to be seen holistically and treated with respect. there is in this awareness of action no contamination of the research findings, for the students are never passive objects being studied by objective observers; they are always co-constituted subjects facing challenges to their previous world views together, guided by the researchers. this might be regarded as a complication in a strictly quantitative study; qualitative sensibilities call for this recognition that subjects and objects are not in fact, different things. materials and methods as creators and nurturers of this teaching/discovery tool, we wrestled with how to best assess (/confirm) its effectiveness and to communicate with others the ways in which it had been particularly effective. looking at the project as research, with the students in roles both as scientist/investigators and as subjects, offered great promise. our main focus, however, is not to collect data to describe static objects in past events, but to continue the ongoing process of nurturing the evolution of this presentation so that future students/professionals will be enticed to view themselves as different subjects through this combination of a window into one familiar-yet-strange subject with prompts to re-see what is familiar with different eyes because of a new formational experience. by utilizing methods from both qualitative and quantitative perspectives we hoped to gain a richer read or different, perhaps competing accounts, or to see different subjects revealed as we gazed through different lenses or perhaps entered the room with different orientations. we did not attempt to correlate the two accounts because their premises are so very different, perhaps incommensurable. instead of triangulation through different data points produced by the methods we used, we expect to end up with two separate accounts, with little to tie them together. nonetheless, they are separate accounts and it might be possible to gain some insight from each, especially as we view them together. this study was conducted in a multicultural psychotherapy course, a required class for second-year doctoral students in a graduate program in clinical psychology. all of the19 graduate students enrolled in the course participated in the study. a 3-hour class session was structured to spend 1 hour in the simulation, 1.5 hours in didactic debriefing with rg and .5 hour in affective processing with ws. for this study, students wrote journal responses in the week after the class session. additionally, qualitative data was collected prior to the class session and after the class session. this study was approved by the george fox university irb and consent was obtained from each participant before the course began. during the simulation phase, students were divided into teams of 3 persons and had one hour to complete the activities. specifically, the students needed to get the signatures of 4 specific individuals in different buildings across the compact, liberal arts campus. each student on the team was assigned one of three defined roles: i) mobility impaired student (i.e., student in a wheelchair) – who rolled through the scavenger hunt and was responsible for getting the required signatures; ii) visually impaired student (i.e., student wore low-vision goggles) – who walked through the scavenger hunt and could aid the student in the wheelchair only if requested; iii) recorder (i.e., observer) – who walked with the team through the scavenger hunt and recorded where challenges were encountered and how non-participating people on campus responded to team members (e.g. eye contact, tone of voice, affect, etc.). the debriefing phase of the activity was done immediately after the simulation and began with students in each role reporting their experiences. rg then presented his experiences as a person with a disability and answered questions from students. he shared personally about how his disability has affected his daily life and activity level. he discussed the hegemonic messages given to persons with a disability e.g., the implicit message to stay home because of the difficulty in getting to places because of problems with access, the difficulties friends experience while trying to overcome structural and architectural barriers on behalf of the person with disabilities, and the negative responses of people who do not understand specific challenges faced by people with disabilities. he shared about the paradox of seeing the person with a disability like everyone else and at the same time acknowledging the disability effects every aspect of that person. he shared personal experiences where he felt systematic discrimination because of his disability. lastly, he discussed what students can do in their clinical practice to effectively provide services to persons with disabilities (e.g., taking histories differently, disabilities etiquette, awareness of the politics of disabilities, etc). finally, the students entered the reflection phase. this began when rg left the class and ws guided students in processing their affective responses. the reflection phase continued in the week following the class as [page 32] [qualitative research in medicine & healthcare 2017; 1:6391] article no nco mm er cia l u se on ly students were asked to write a journal entry in which they reflected on their own emotional responses, attitudes, and insights during and following the exercise. students turned these journals in to ws, the course instructor, with the expectation that he would comment on them and the entry completion would contribute to course grades. results quantitative results before and after the class session, students were asked to respond on a scale of 1-10 (1=completely unprepared, 5=adequately prepared, 10=exceptionally prepared) to the prompt how prepared are you to work with a client with disabilities? because the data are ordinal and not scalar, we compared the modes of the beforeand-after responses and used a wilcoxon signed ranks test to compare the numbers of students who became more and less confident in their preparation following the class exercise. more complex quantitative measures, such as means, variances and standard deviations would not be appropriate for use with these data. the modal response before class was 4 (range 3-7) while the modal response after class was 7 (range 2-8). a wilcoxon test indicated that significantly more students reported increased confidence after the exercise (n=10) than less confidence (n=3) or no change (n=4), z=1.99, p=.047. interestingly, two students said they were more humble and aware that they would need to do more to feel competent to work effectively with people with disabilities. their responses in the more conservative direction imply an even stronger effect of the intervention than is reported. qualitative results all of the written responses of the students were collected and ws, kg and sh collaboratively selected quotations addressing the impact of the exercise on the students’ professional preparation and personal development. there were no explicitly negative comments, and these three evaluators agreed on which quotations would be reported. before the scavenger hunt, two students acknowledged that they already had clinical work with people with disabilities. interestingly, after the event more students referred to their previous clinical experiences. prior to the exercise, students said their approach with clients with disabilities would be strengths-based and students said they would be direct in asking about the disability. i think i would try to talk about the disability early on in our first session, and make sure i was not missing anything they would like me to know about that part of his or her life. most students acknowledged the need for flexibility of responses and the desire to accommodate the needs of the people with disabilities to host the therapy session well. my answer varies significantly depending on the disability. however, as a general response, i would ensure my environment and therapeutic approach was appropriate for the client. i would want to gain specific knowledge regarding the disability to ensure i was aware of any accommodations i would need to make. after the scavenger hunt, all the pre-exercise themes were echoed as well as deepened with additional details and some new insights. for example, students acknowledged that the person with a disability is not just their disability. i would work to ensure the client felt seen for who they are as a person, not as their disability. i would be conscious of how directly their disability impacts who they are in the world but also attend to discovering how it is they desire to be seen. students expressed more concern about the client’s subjectivity after the exercise. i would realize that the client is not their disability, but their disability affects everything they do. i would ask my client about their disability, but it would not be the first question i would ask. i would try to get to know their interests. i would not make assumptions about their disability, no matter how much i thought i knew about what life was like for them. i would want to know about their subjective experience of their disability, how they feel about others…i would want to know about their isolation, their longing for connection, and the ways that the world moves with them. students also saw the potential need to advocate for and with their clients with disabilities after the exercise. working with an individual with a disability may require advocacy, as they often lack power in an environment that is unaccommodating to their needs. i would become familiar with community resources that may help meet particular needs that the client brings into therapy, that cannot be dealt with inside of the therapy room. after the exercise, a few students reflected pointedly about their own biases. softening my heart, becoming aware of my incredible fear of the other that comes through as anxiety…realizing i subtly avoid situations where i do not know what to do socially…i avoid people with disabilities and people who are different from me because i get uncomfortable. i am ashamed of seeing this side of me, but seeing this side makes me think i am now only beginning to be prepared to work with people with disabilities. after the scavenger hunt, students said that knowing [qualitative research in medicine & healthcare 2017; 1:6391] [page 33] article no nco mm er cia l u se on ly non-clinical people with disabilities or knowing people with disabilities in non-clinical settings would be helpful. they added that examining their own biases would help them be better prepared. …being friends with people with disabilities, taking time at church to talk with those who have disabilities and talk with them about their lives, not just focus on challenges but person as a whole, doing clinical work with people with disabilities, taking time to examine my own prejudices and macro-aggressions and assumptions that i may have when interacting with individuals with varying disability. finally, after the exercise, students added that the experience helped them feel more prepared and better able to anticipate asking questions and being flexible. my hope that i would be able to avoid major mistakes and be able to determine what goals a person has, and how they are working towards them. i also feel like i have a little more knowledge into what life can look like. learning about the difficulties with ada accessibility, the contributing factors to loneliness, and the lack of unification within disability groups was helpful. i feel more prepared now that i have had not just academic exposure but also had a specific experience with a person with a disability. experiential learning imprints the person’s story into memory with more meaning than strictly reading an academic text. in the journals that students wrote the week after the scavenger hunt, their responses were deep and self-reflective. two common themes were the value of the combined class experience (i.e., simulation and didactic debriefing) and the importance of rg’s emotional vulnerability during his presentation. students also described the value of the experience in preparing them to be better clinicians. about a third of the students described a more transformational insight, usually by revealing a personal failure, e.g. bias, misperception and then committing to better preparation. one student wrote, i have spent a lot of time with people with a lot of different problems, but not until this presentation did i realize how far removed i was and how far guarded i was from the lived experience of people with disabilities. i am afraid of dwelling in the sorrows and sufferings, even for a moment, that a disabled person experiences for many moments of every day. i am terrified of even trying to understand; there is so much sadness. i want to grow in my ability to be an ally to the disabled community. i want to recognize the paradox… another student said, i wanted to leave class feeling like we are doing ok as a society, not that we are leaving precious souls behind as we march on focused on fueling [our] own lives and meeting our own needs. as a therapist i want desperately to help all my clients, especially those with disabilities to find their place in the world where they can reach their potential and feel satisfied in being who they are called to be. finally, one student reflected on his own identity as a person with a disability in ways that he has not in other contexts. however, the fact my disability has been largely treatable with medications makes me a privileged individual. which leads me to return to my earlier statement that self-disclosure of any of my personal experiences with the disability culture needs to be done with great discernment. my treatable condition also gives me privilege in my role as a therapist in that i have experiences in the disability culture that other psychologists can never have. this equips me to work within the disabled community in ways that even a professional degree cannot. discussion critical theory claims that we are all, to some extent, products of our environment, society, history, and culture. our taken-for-granted, mundane experiences contribute to our individual and collective worldviews, and these worldviews are active participants in the re-/creation of what the world means for each of us. these forces are powerful, especially as they are taken-forgranted and thus not typically subjected to examination and evaluation, sometimes powerful enough to cause us to work against our own self interests.15 worldviews are not, however, fixed or unassailable. through a process of education, of reflection and especially by utilizing way-points that are foreign to existing dominant paradigms, individuals may hold their attitudes and opinions up to examination thus subjecting them to the potential for change. this is not something that can be done for someone, however, and the whole process may well be resisted by the individual under examination. such resistance may even lead to people actively striving to participate in their own deception or even their own oppression.16 thus, there is no set syllabus for creating change within people. each individual must find ways in which their existing worldview sits uneasily, where one element seems to work against another. by identifying and amplifying these incongruences, through a process of intense self-reflection, people can nurture the conditions necessary for change. it is the internal landscape, at least as much as the external, in which the primary rearrangement must occur. external, even societal and cultural changes, become more likely because they begin and are supported by the individual’s new internal landscape, the new set of taken-for-granteds. these newly discovered beliefs and attitudes are even stronger than the ones that [page 34] [qualitative research in medicine & healthcare 2017; 1:6391] article no nco mm er cia l u se on ly preceded them because they have arisen out of the process of self-reflection rather than of acceptance from an external authority. critical theory then would predict many of the findings of shakespeare and kleine (2015). an external lecturer would be unlikely to initiate fundamental change in the way students see themselves and others. individual encounters with people with disabilities would be expected to provide more likelihood of attitude change, but unreinforced, these changes are unlikely to withstand the pressure of the many factors relentlessly promoting the previously held perspectives. lasting attitude change would be the result of i) long term exposure to people whose experience contradicts the generally held world views, ii) experiencing a multitude of mundane, takenfor-granted experiences which lend their accumulated weight to the pressure to change existing beliefs, iii) coupled with a strong incentive to self-reflection through the diagnostic patient/provider relationship and its expectations. this combination would be predicted to be among the most effective routes to significant change of existing values about people with disabilities, and would be expected to be among the only techniques leading to long-term change in the way individuals see their worlds. the four tasks we asked students to engage in were a simulation of disability and by themselves – isolated from the context of an unfolding worldview – would likely lead to distorted views of the experience of people with disabilities, for whom the disability is a taken-forgranted part of their worlds. an encounter with a person with disabilities alone may be emotively rich and an introduction into another’s very different worldview but without the personal experience and devoid of the process of intense self-reflection of how these new perspectives may or may not fit among those previously held, the encounter alone is unlikely to result in real change in the way students live in their worlds. journaling encourages self-reflection, but without the real world experiences and without sufficient friction among existing perspectives, the reflective exercise itself is unlikely to result in significant change once the student reinserts into their existing environment, which was largely responsible for creating their existing perspectives about people with disabilities. another way of perceiving this change incentive is to note the changed relationship between the investigator and investigated. in a lecture we get an account of someone else’s inquiry about something. in a one-time encounter, we experience a taste of better understanding of the subject (i.e. persons with disabilities) through a new and more personal mode of examination. in the journaling process, we are pushed to look beyond the surface relationships of the things we see and ensure they fit within our existing way of seeing the world. once we combine these approaches, however, a new transformation occurs. instead of the person with disabilities being the subject of the investigation by the researcher, or of an account of another researcher’s journey, the subject of the investigation is the student and his or her own existing worldview, while the person with disabilities does not replace the student in role of researcher, but rather becomes a guide. thus, when these three elements are combined – simulation, encounter, and reflection – the process transforms into one in which the student becomes the researcher and the subject being investigated is the student’s own world view, his or her internal terrain. as we delved deeper into the shakespeare and kleine data, we wondered whether a new category might make their model even stronger. in their analysis, there is no specific category for reflection and relevance, functions filled by our journaling process. it is easy to contemplate how the structured or semi-structured exercise of guided reflection over one’s attitudes and experiences with people with disabilities might be more effective in achieving long-term results than any exercise in which the participants might stop consideration at the conclusion of the contact. one would expect that active and deep reflection would result in additional depth of change and perhaps even make the changes more resilient. a reexamination of articles cited by shakespeare and kleine reveals that those in which attitude change did occur included some activity that required students to reflect on their experiences with persons with disabilities. the reflective activities took many forms. in some cases, like ours, students wrote journals or reflective responses.17-21 in other instances, reflection took place in the context of discussions.22-24 importantly, instances in which there was no reflection, no attitude change (or negative change) was found,25,26 although knowledge change might occur.27,28 finally, two programs were described and implemented, but no outcome data were reported. these are a program described by symons, mcguigan, and akl which asks students to journal and a recent description by boyd of a program requiring reflective discussions.29,30 we anticipate that data from both of these programs will reveal attitude change toward people with disabilities. limits, scope and further investigation researchers and clinicians have acknowledged that merely assessing a phenomenon can serve as an intervention. campbell and stanley and cook and campbell describe the testing threat in quasi-experimental research designs.31,32 they ask whether the very experience of answering question, for example pre-intervention questions, might engage students in a way that poses a threat to the internal validity of a research design. in our exercise, the students knew they would be involved in some sort of research project about the course material before the simulation and it is not unreasonable to sug [qualitative research in medicine & healthcare 2017; 1:6391] [page 35] article no nco mm er cia l u se on ly gest that the pretesting primed students for the other phases of the experience. the students’ responses were also impacted by the strength of the intervention. several aspects of pedagogy affected the intensity of the simulation. for example, over the years we have increased the length of time spent in the simulation. also, we have conducted the simulation in some years switching among the team members, so that each had an opportunity to be sight-impacted, mobility-disabled, and the recorder. our experience has been that the longer a student participates with the loss of vision, for example, the more poignant the experience and the greater the sense of loss. it takes a while for novelty to wear off, and even longer for adaptive changes in behavior to begin to take effect – such as the visually impaired student giving up on being part of the conversation because of the difficulty of following in the absence of visual conversation cues. instructional time is always limited, and the time required to switch roles is also time deducted from the experience of conducting tasks, and thus time for the desired inversions to occur. this exercise is also likely effective because we have crafted it for an appropriate audience. graduate students who have been selected into and begun their training within a program of clinical psychology might be more open to empathic experiences, critical of their own existing biases and sensitive to the need for additional changes in their perceptions of others than even students in medical school.33 at times we have adapted this exercise to an undergraduate classroom, with limited success. it did seem to open students’ eyes to the awful obstacles faced by people with disabilities, although in some cases the sort of distortions talked about in shakespeare and kleine could be seen, leading to a false sense of adventure – almost like a real-life video game – as students basking in the novelty raced downhill in wheelchairs in the absence of serious real-world strictures against failure. in other cases students were overheard making statements such as, i don’t see how anyone could ever get anything done like this hinting at a fatalism not helpful in preparing to assist people with disabilities. journaling by undergraduate students also did not seem to result in the same depth of reflection and thus provided a limited opportunity for the transformative inversion graduate students experienced, although there clearly are studies that demonstrate journaling can be effective in changing undergraduate students’ attitudes toward people with disabilities.34 thus it is possible that the synergies experienced among the simulation, debriefing, and journaling components of this exercise, when transplanted to other disciplines, might not result in the life transforming changes we witnessed. it might be of particular interest to investigate responses among students arranged in different typologies. another set of interesting questions for additional research involves the relative effectiveness of different presenters. rg has always been the presenter in this program, and while he holds a doctorate in the social sciences and humanities, he is not a professional clinical psychologist. given our assumptions about the importance of the status of the presenter, might this be more or less effective than featuring someone with a disability who is a practicing clinician, professor, or other health care professional? we also wondered how these changes might hold up over time. our students continue to be immersed in a training program that values their ability to serve people with disabilities, however wong and wong observed, when students who have experience positive attitude change about people with disabilities are returned to an inhospitable environment their attitudes quickly revert back.35 as iezzoni, ramanan, and drews comment, this is especially true when disrespectful attitudes about people with disabilities are modeled by more senior, and therefore more powerful, students, faculty, and supervisors.36 perhaps the most important limitation of this work, as well as the single area crying out most fearfully for additional study, is the question of effectiveness and the predictive validity of our quantitative outcome measures. while we have taken some steps to address these concerns by examining our data in qualitative terms, much investigation remains into the complex ways in which students/professionals/society and cultural members form and interact and the ways perspectives are created and altered. the studies reviewed by shakespeare and kleine utilize a collection of qualitative and quantitative perspectives which offer some intuitive measures of effectiveness of knowledge and attitude changes, yet this begs the question as to whether greater sensitivity towards people with disabilities is in fact the climactic attitude, or whether a more realistic perspective would be to follow the long-term value of these interventions to see whether it impacts our students’ future clinical practice and whether their clients can identify their attitudes as helpful and them as allies in the health care of people with disabilities.20,27 even traditional concepts such as effective come embedded with specific cultural and social perspectives with biases, adopting positions which take for granted ill-defined social goals and unintended consequences. who, for example, gets to determine just what is best for both clinicians and for clients? we expect that an increased attention to qualitative methods and research designs will provide enough richness and variety to begin the work of identifying consequences of rendering problematic unexamined popular culture perspectives about disabilities and the people who live with them. in regards to the methods we used, we need to exercise some care. our quantitative approaches make the huge assumption that respondents’ use of words means the same as the researchers intended, and that each respondent’s use of a similar response means the same as [page 36] [qualitative research in medicine & healthcare 2017; 1:6391] article no nco mm er cia l u se on ly each other respondent. this assumption is given in the very process of counting things. we make similar assumptions, if not so sweeping, in our qualitative approach, we do, after all, presume a common understanding of the same word symbols so that we do understand what respondents meant by their choice of words. ultimately these assumptions find support in the variety of journal responses, and the consistent tone. we must continue to remember that words are complex things, and that our construction of meaning is very much a joint endeavor between researchers and respondents one area for further study might be looking for other evidence that long term change did occur, beyond a change in vocabulary. conclusions the purpose of this project was to evaluate the effectiveness of a pedagogical exercise in changing attitudes toward disability among graduate students preparing for careers in mental health professions. in the end, we are cautiously optimistic that changes in training health care providers, especially using simulation, debriefing, and guided self-reflection in combination can change attitudes 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introducing disability studies to occupational therapy students. am j occup ther 2005;59:554-60. 20. corwin sj, frahm k, ochs la, et al. medical student and senior participants’ perceptions of a mentoring program designed to enhance geriatric medical education. gerontol geriatr educ 2006:26:47-65. 21. gitlow l, flecky k. integrating disability studies concepts into occupational therapy education using service learning. am j occup ther 2005;59:546-53. 22. anderson es, smith r, thorpe ln. learning from lives together: medical and social work students’ experiences of learning from people with disabilities in the community. health soc care commun 2010;18:229-40. 23. duggan a, bradshaw ys, carroll se, et al. what can i learn from this interaction? a qualitative analysis of medical student self-reflection and learning in a standardized patient exercise about disability. j health commun 2009;14:797-811. 24. moroz a, gonzalez-ramos g, festinger t, et al. immediate and follow-up effects of a brief disability curriculum on disability knowledge and attitudes of pm&r residents: a comparison group trial. med teach 2010;32:e360-4. 25. fruhauf ca, jarrott se, lambert-shute jj. service-learners at dementia care programs: an intervention for improving contact, comfort, and attitudes. gerontol geriatr educ 2004;25:37-52. 26. mcconville sa, lane am. using on-line video clips to enhance self-efficacy toward dealing with difficult situations among nursing students. nurse educ today 2006;26:200-8. 27. kleinert hl, sanders c, mink j, et al. improving student dentist competencies and perception of difficulty in delivering care to children with developmental disabilities using a virtual patient module. j dent educ 2007;71:279-86. 28. zwahlen d, herman cj, smithpeter mv, et al. medical students’ longitudinal and cross-sectional attitudes toward and [qualitative research in medicine & healthcare 2017; 1:6391] [page 37] article no nco mm er cia l u se on ly knowledge of geriatrics at the university of new mexico school of medicine. j am geriatr soc 2010;58:2049-50. 29. boyd k. the curriculum of caring: fostering compassionate, person-centered health care. ama j ethics 2016;18:384-92. 30. symons ab, mcguigan d, akl ea. a curriculum to teach medical students to care for people with disabilities: development and initial implementation. bmc med educ 2009;9:78. 31. campbell dt, stanley jc. experimental and quasi-experimental designs for research. boston, ma: houghton mifflin company; 1966. 32. cook td, campbell dt. quasi-experimentation: design and analysis issues for field settings. chicago, il: rand-mcnally; 1979. 33. sherrard s. empathy in psychology and medical students: an investigation of the cognitive and emotional components of empathy. newberg, or: george fox university; 2007. 34. lower e, dreidger d. before and after, self inventory, and self reflection. available from: http://dsq-sds.org/article/ view/141/141 35. wong pks, wong dfk. enhancing staff attitudes, knowledge and skills in supporting the self-determination of adults with intellectual disability in residential settings in hong kong: a pretest–posttest comparison group design. j intellect disabil res 2008;52:230-43. 36. iezzoni li, ramanan ra, drews re. teaching medical students about communicating with patients who have sensory or physical disabilities. available from: http://www.dsqsds.org/article/view/527/704 [page 38] [qualitative research in medicine & healthcare 2017; 1:6391] article no nco mm er cia l u se on ly layout 1 introduction this study began out of curiosity after the first author met a patient who spontaneously talked about her experience of a tunnel of light following a sudden cardiac arrest (sca). she described the light as peaceful and loving, and said that she felt very welcome and had neither anxiety nor fear. the experience changed her view of life and death. she became convinced that life continued after death and said she had no more anxiety around death or dying, illustrating the potential for fundamental changes in a person’s perspective following a near-death experience (nde). in this article, we limit our use of “nde" to mean a lifethreatening episode accompanied by an altered state of perception (greyson, 1994; moody, 1975). the phenomenon has been reported in many different circumstances such as scas, massive blood loss, strokes, traumatic brain injuries, near drownings, and asphyxia (agrillo 2011, van lommel 2010). often, patients resuscitated from ndes report memories of out-of-body experiences, pleasant emotions, seeing a tunnel of light (or just a light), meeting with deceased relatives, and/or life reviews, meaning parts or one’s whole life are re-experienced (van lommel, et al., 2001). various studies have found that about 10 to 20% of survivors of near-death experiences and the change of worldview in survivors of sudden cardiac arrest: a phenomenological and hermeneutical study hans zingmark,1,2 anetth granberg-axèll2,3 1department of internal medicine, halland hospital, halmstad; 2department of research & development, region halland, halmstad; 3institute for clinical sciences malmö, lund university, sweden abstract near-death experiences (ndes) can occur during episodes of unconsciousness from life-threatening conditions, such as sudden cardiac arrests (scas). this study is based on interviews with patients who had an nde. the interviews were analyzed with phenomenological hermeneutical method for their lived experiences and the meaning for the view of life and death. four participants were interviewed 10 weeks after their nde. four themes emerged: being on the other side, in another dimension; not dreaming, this is a real experience; being in a non-physical condition without my body; and comparing views of life and death before and after the ndes. the participants described the ndes as an experience of another realm as non-physical in nature and existing beyond space and time. this study shows that this experience of another state of being, through the lived experiences of ndes, gave the participants an entirely new meaning on life and death. to them, death was no longer viewed as an end but a passage into something else and that life continues after death. this realization instantly changed their worldview. correspondence: hans zingmark, department of research & development, region halland, lasarettsgatan, 301 85 halmstad, sweden. tel.: +46(0)35.131494 e-mail: hans.zingmark@regionhalland.se key words: near dead experiences; lived experiences; worldview; sudden cardiac arrest. acknowledgements: we are grateful to the participants in the study and to the staff and managers for giving access to the study location. we also want to give thanks to theologian katarina orvedal and to dr. berne eriksson md for their advice and support, and to christie tetreault for editing and proofreading assistance contributions: hz, data collection, hz and aga, data analysis and manuscript writing. conflict of interests: the authors declare no conflict of interests. funding: the work has been funded by the department of research & development, region halland, halmstad sweden; conference presentations: none availability of data and materials: all data generated or analyzed during this study are included in this published article. ethics approval and consent to participate: the ethics committee of lund university approved this study (dnr: 2016/87). the study is conformed with the helsinki declaration of 1964, as revised in 2013, concerning human and animal rights. all patients participating in this study signed a written informed consent form for participating in this study. informed consent: written informed consent was obtained from a legally authorized representative(s) for anonymized patient information to be published in this article. received for publication: 21 december 2021. revision received: 13 november 2022. accepted for publication: 6 december 2022. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2022 licensee pagepress, italy qualitative research in medicine & healthcare 2022; 6:10241 doi:10.4081/qrmh.2022.10241 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. [page 76] [qualitative research in medicine & healthcare 2022; 6:10241] qualitative research in medicine & healthcare 2022; volume 6:10241 no nco mm er cia l u se on ly scas have reported ndes (greyson, 2003; parnia et al., 2001; schwaninger et al., 2002; van lommel et al., 2001). as practicing physicians, we wanted to know more about what nda patients think about their experiences to better communicate with them and to share our understanding with other healthcare providers. effective communication is, of course, fundamental to fostering mutual comprehension between patients and healthcare providers. mutual comprehension, in turn, is crucial in building trusting and effective patient/provider relationships. we therefore approach this article from a phenomenological perspective, meaning that we suspend our preconceptions regarding what patients experience in the minutes of unconsciousness during ndes. temporarily putting aside our perspectives rooted in medical science, we give full attention to what patients tell us so that we can better understand what they believe about their experiences, trying to see circumstances from their points of view. gaining that understanding from their perspectives will allow us to find a new place, a kind of middle ground, in which to engage with and serve patients who experience ndes in a more informed way. research exploring the nature of ndes has been extensive in recent years (see, e.g., parnia, 2017; pratte, 2022), and qualitative research methods have brought a deeper understanding of the characteristics and interpreted meanings of ndes (see, e.g., seifu et al., 2022). for example, a thematic analysis of 34 cardiac survivor nde narratives by cassol et al. (2018) provided detailed information about the vocabulary used by people who have experienced ndes to describe their experiences. their study found 11 themes demonstrating the diversity of how ndes are experienced and described. another study of a physician who had an nde after surviving an sca suggested that ndes have a tendency to trigger a long-term process of spiritual transformation and a change in patients’ understanding of the nature of consciousness (woollacott & peyton, 2021). in a study conducted in the netherlands between 1988 and 1992 (van lommel et al., 2001), 62 (18%) out of the 344 survivors of scas had experiences of ndes. these 62 patients, together with a matched control group consisting of 74 patients without reported ndes, were interviewed two and eight years after their scas. the study showed that participants in both groups had positive transformational changes with more self-assurance, social awareness, and religious beliefs compared to how they were prior to their health crises. however, participants who had ndes experienced more significant changes, including having more complex coping processes, becoming more emotionally sensitive and empathic, having little to no fear of death, and believing strongly in an afterlife. these changes were also more pronounced among the nde participants at the twoand eight-year follow-ups. building on the thematic research conducted by cassol et al. (2018), our goal in this study is to explore nde experiences using phenomenological and hermeneutical methods of inquiry developed by lindseth and norberg (2004) (see also dahlberg, 1995.) as such, we endeavour to understand the meanings of ndes as experienced by patients, with particular attention being placed on how ndes transform patients’ perspectives on life and death, specifically, as well as their effects on patients’ worldviews, in general. our intention is to deepen our awareness of nde experiences to better understand, communicate with, and serve patients who share these life-altering incidents (see also, somoilo & corcoran, 2020). the first author of this study works in a clinic as a pulmonologist where he interacts with students and patients daily. the second author is newly retired, and has worked until lately as a practicing physician and clinical lecturer. she is an assistant professor who had a lengthy career in the icu as a researcher and nurse in which she treated several patients who had experienced ndes. throughout the data collection, analysis, and reporting of this research, both authors strived to maintain their openness toward the topic of ndes, meaning that we remained aware of our pre-understanding and preconceptions about ndes derived from formal medical training, while, at the same time, being sensitive to participants’ perceptions and interpretations of ndes (see gadamer, 1989). the research period was from august 2016 to august 2017. we included sca patients via initial convenience sampling in an emergency ward of a swedish hospital. all participants had a confirmed sca, and they were resuscitated through the use of defibrillators. defibrillators have a built-in electrocardiogram function that monitors the electrical activity of the heart and is programmed only to function (giving electrical shocks) when there is ventricular fibrillation, i.e. electrical disorder and no cardiac contractions (sca). in that sense, all participants have been declared clinically dead. during the research period, five out of 30 patients (22 men, eight women) who were successfully resuscitated from their scas had reported experiences from the scas that were initially perceived as possibly being ndes. one of these five died a few days after the first contact with the researchers before being interviewed; thus, four were included in the study. all participants were male and middle-aged or older. ethical considerations this study was approved by the regional committee of medical research ethics at the university of lund sweden in august 2016 (dnr 2016/87). patients were informed about the study and its purpose and processes. participants gave their written consent, and they were informed about their right to withdraw at any time without having to give a reason in accordance with the declaration of helsinki (world medical organization, 1996). pseudonyms are used to maintain participant anonymity. [qualitative research in medicine & healthcare 2022; 6:10241] [page 77] article no nco mm er cia l u se on ly materials and methods data collection all nurses and physicians working in the medical wards at the hospital were asked to contact the first author if they were caring for a patient who had an sca (via the emergency ward) and had been successfully resuscitated. if the patient talked about memories after and during the sca, they were asked if the first author could contact them by phone and send them information about the study by mail. eight weeks after the scas, the first author phoned the patients to ask if they wanted to participate in the study. by then, the patients had recovered and were given the opportunity to give their formal consent to participate. interviews were conducted by the first author in a quiet room at the hospital 10 weeks after participants’ scas, were tape recorded, and lasted about one and a half hours each. interviews were semi-structured and began as a simple conversation, starting with an open question: “what were your first experiences, thoughts, and feelings when you woke up after you had been unconscious in association with your cardiac arrest?” for the most part, the patients talked spontaneously about their experiences and feelings of having had an nde. it was important to let the participants use their own phrases and words. thus, the interviewer waited and was patient in allowing the participants enough time to express themselves. to get participants to elaborate more, when necessary, a follow-up question, such as, “what do mean by that?” was asked. near the end of the interviews, there were some specific questions on worldview changes such as, “have your values or thoughts about life and death changed since the nde?” analytical method our initial analytical step was to carefully read the interviews, each of which was transcribed verbatim by the first author. following lindseth and norberg (2004), we interpreted transcripts by conducting a naive reading followed by a thematic structural analysis. by “naive reading,” we mean that it was important to let the text speak for itself without interpretation. as such, both authors read the transcribed interviews several times separately, letting the narrators describe their memories in their own ways while we set aside our preconceptions about physiological conditions accompanying ndes (see, e.g., gopalan, et al., 1999; de vries, et al., 1998). following the naive readings, we conducted the thematic structural analysis by looking for patterns among stories told by multiple patients (lindstedt and norberg, 2004), with each author working independently, augmented by regular meetings to discuss what we had read. patterns emerged from the data as we divided texts into meaning units, i.e., phrases and sentences that described similar thoughts, feelings, and perceptions (e.g., “on the other side” and “my consciousness had been in two different rooms.”). themes such as being in another dimension emerged as we combined similar meaning units; by “theme,” we mean a thread of meaning recurring through multiple texts. after we read and interpreted the texts over several months, we took a step back to get a sense of the wider meaning of what having an nde was to our participants. during this comprehensive reading, our pre-understanding, the naive reading, repeated readings of the interviews, and the structural analysis were all reflected upon. engaging with the text in this way allowed us to build a hermeneutic circle, using phenomenological, hermeneutic interpretation developed by ricoeur (1991) as an iterative movement among i) listening, ii) interpreting, and iii) explaining (see also, kemp & kristenson, 1989). the resulting dialectic between understanding and explanation, which is characteristic of ricoeur’s method of interpretation, implies a spiraling movement between the three phases while reflecting upon relationships between the entirety of our data and the analytical parts (ricoeur, 1976). following this approach, together, we refined our interpretations by re-reading the interviews as patterns emerged, followed by further discussion on our interpretations until we reached a point of interpretive saturation. participants anders was married and 74 years of age. he had ended his working career in a leading position for a company with 20 employees. he viewed himself as an easy-going man who, for the most part, had a bright outlook on life. he experienced an nde during an sca that lasted nearly two minutes. he said that the nde started with a brightly lit, joyful meeting with his parents when he was about two or three years old, followed by a life review, where he re-experienced his life at intensely high speed. he said that if he had compared it to the world’s fastest computer, the computer would have been slow in contrast. to him, the experience was clear and vivid, featuring memories and people from his past who were alive again. he also explained that before the experience, he did not believe in any form of continuation of life after death, although he said he had thought about it previously. bertil was 57 years old, married, and had adult children. he was an officer in law enforcement. he recalled experiencing a tunnel of light during an sca that also lasted approximately two minutes. the experience was very real to him. he felt like he was completely there with his whole consciousness and that he was moving forward inside a tunnel of light that he perceived to have an end, but which he never reached. the tunnel and the surroundings were full of life, and he said that never thought it had anything to do with death. he felt comfortable and unafraid. he was very curious about the tunnel and all that was going on there. as with anders, bertil was also very clear about a non-belief in continuation of life after death before his experience. sven was the youngest in the group at 41 years of age. [page 78] [qualitative research in medicine & healthcare 2022; 6:10241] article no nco mm er cia l u se on ly he was married and a father of two children in their early teens. he was an officer in the swedish military. sven experienced an nde lasting approximately five minutes during an sca at his work, and he was resuscitated by his colleagues. he experienced a light that he described as very strong, full of life, and without any evil at all. his impression was that he was standing at the beginning of something, as if on a threshold, as he watched a light all around and in front of him. to him, the experience was also very clear, and he felt calm and without fear. in the distance, he also heard the voices of his colleagues who were resuscitating him. he felt an enormous resistance against returning to his body. his impression was that his consciousness had experienced another realm, completely different from the current physical world. he said that he did not have many thoughts or firm beliefs about the continuation of life before his nde experience. john was the oldest participant at 88 years of age. he was a widower whose wife passed away many years ago. he lived by himself in a house in the countryside. he described himself as a man from nature, a down-to-earth human being who appreciated the small things in life such as a deer passing over the field next to the house where he lived. his experience was of being in between the physical world and something he described as “the world of the dead” during an sca that lasted six to eight minutes. he had no visions, but rather a vivid sense of traveling towards something that he described as "the other side" where the atmosphere was peaceful and very welcoming. he loved the atmosphere, and he cried deeply when he described how it was there. he was also aware of his own body and had a strong feeling of wanting the people who were helping him to stop their resuscitation attempt. he did not want to go back to what he described as “life” again. he wanted to go on. prior to the nde, his view of life after death leaned in the direction that there was a possibility of life after death, but his nde experience cemented that belief. findings analysis of the four interviews resulted in four main themes: i) being on the other side, in another dimension; ii) not dreaming, this is a real experience; iii) being in a nonphysical condition without a body; and iv) comparing views of life and death before and after ndes. theme 1: being on the other side, in another dimension anders, bertil, sven, and john all described their experiences during the scas as being on route to another place, a kind of alternate reality that they had never experienced before. they described it as a liminal state existing in between the physical world and the world coming after. as anders said, “i was on the other side and had this experience….” bertil similarly described the experience in spatial terms, but also as “knowledge”: “yes, yes clearly, but it is an experience of a completely different realm, and it is clear, and to me it is knowledge.” similarly, sven described his experience as being in a space consisting of an altered reality: “but definitely, something else exists, which is not this in any way…. my experience is that i have been in a completely different, in a completely other state.” john was particularly descriptive about being on his way to “the other side” and described the atmosphere as a room of total peace and a welcoming kind of “warmth”— something he had never experienced before: yes, i was on the way to death, yes, in that direction. i say that i was going to leave the earthly [realm] and move into all. i was sure of that, yes, the spiritual world. sure…because i was going toward something. i was not somehow…dead. for participants, “the other side” consisted of a very strong and bright light that was full of life, free from all evil, vivid, and perfectly still. the light was perceived as a place existing outside of physical reality. as sven explained: yes, it is, it is utterly light. there is nothing. it is entirely… it is…. there is no place on earth that looks like this… but that feeling… and that peacefulness. that does not exist on earth. bertil recalled traveling in an infinite tunnel of light that, paradoxically, had an end that he would have reached if he has travelled a while longer. the tunnel was full of life, and in the background, people were “babbling” as a sign of an ongoing activity, which contributed even more to the calmness, safety, and curiosity he felt. none of the participants were surprised at being in that condition or in that place, and interestingly, they perceived the return to their normal, physical reality as being more confusing. bertil, for example, recounted: no, i was not surprised at all, because all of a sudden, i just stood there in that tunnel, and i was not astonished, and i just moved ahead and heard these voices and all that. so, i was not surprised at all, but when i woke up again, i felt a little confused. then, i did not really understand where i was because there were two different worlds. the tunnel i found myself in was more real than the world i came back to. i went from one world [and] back to the normal world again. bertil’s observation that the tunnel was “more real” than normal reality is particularly interesting, emphasizing the vividness of his experience—a factor to which we return in theme 2. anders described his experience as reliving his life with a clear concept that the experience took place on “the other side.” again, the experience was clear, concrete and, in an[qualitative research in medicine & healthcare 2022; 6:10241] [page 79] article no nco mm er cia l u se on ly ders’ case, went very quickly, as if time did not exist in that place. he explained that being on the other side allowed his brain to work extremely fast: my brain was rapid before when i was on the other side. it is completely inconceivable that you can, that it is so clear…. yes, it was my life in bbbbsssspppp [sound]…in such a short time…. honestly speaking, how can something be that fast, in little over one and a half minutes then? bertil similarly reflected on his own expanded perception within the space that he perceived: yes, it is…yes, it is, what shall i say? my experience is that…. my brain has been in two different places. my mind, my consciousness, has been in two different rooms. then, i cannot say it was another world, but my mind has registered another place, or another state that has given me that feeling, very clearly…. no, i cannot say what it was, other than it exists in, in…another dimension or something. another dimension…exists, somehow. while perceptions of altered space have been commonly reported in studies of ndes (see, e.g., khanna & grayson 2014), we believe that the salience of that perception is a crucial factor conditioning participants’ memories and the meanings that they attached to those memories. what is perhaps most significant is that they associated that space with complete lack of doubt. indeed, any uncertainty that they expressed pertained to how they processed their return to their former sense of reality. theme 2: not dreaming, this is a real experience reinforcing the feeling of certainty associated with an alternate space, participants were adamant that their memories were not dreams. dreams, according to participants, were much more transparent in their character and did not have the same weight and impact as the ndes which were described as utterly real and very clear. indeed, participants were eager to contrast dreams and their ndes. as anders explained: “this was real in my consciousness, and it was crystal clear all the time, and it was not a dream. so, this is very, very real for me, this experience.” and sven concurred: this had a completely other power…and strength. a dream is…then you just hiccup and are awake, no, no. i have never dreamed in that direction before, no, absolutely not. a dream does not have the same weight as this experience. memories of the ndes were vivid and specific. they did not fade in the same way dreams often do: a dream can be, that anything can become anything. then, then it is possible to confuse a “prince for a pauper.” no, but this, understand me, i am coming back to, you see, that…it is so clear…in such a short time. yes, that is so amazingly strange. (anders) as anders suggests, while ndes were not interpreted as dreams, they were also fundamentally different— “strange”—in contrast to normal experience. furthermore, these examples demonstrate that participants were adamant that there was a sharp contrast between dreams and the ndes—i.e., between dreams and their new senses of reality. theme 3: being in a non-physical condition without my body participants described in different ways how the environment they experienced during the resuscitation and the ndes was non-physical in its essence: you do not see any walls; you do not see any…ultimate border. no roof, no nothing. everything is like you have put on…10,000 watts of light in this room, but with a warm and comfortable part. (sven) within this new context, participants described finding themselves with full consciousness and the ability to observe a realm of non-physical characteristics without borders and beyond time. as we have seen, for example, anders described reliving his life in a blink of an eye, and in that sense, time seemed irrelevant or nonexistent. similarly, within the context described, participants’ physical bodies also lost their significance. as bertil said: “i did not know if i had my body with me because i did not see it and no, no my eyes were not there…but, i still have the picture of what it looked like, anyway.” sven also felt disconnected from his body during resuscitation. he remembered thinking that this was strange because he felt that resuscitation should be rather painful. as noted above, sven experienced a powerful resistance toward coming back to his body occurring at the same time as he heard the voices of the people who resuscitated him: because i was pretty badly battered when my body laid on the floor, but i had no sense of that with me in that condition. that feeling i am in great danger here…and somehow it is like that. that strikes me actually now…. i should actually, if that feeling…. if that comprehension should be linked to my body, then i should have felt that i have had pain there. terrible pain because they were pumping quite hard on me. but, on the contrary. i was completely peaceful; it felt totally calming for me. bertil similarly felt disconnected from his body: [page 80] [qualitative research in medicine & healthcare 2022; 6:10241] article no nco mm er cia l u se on ly my physical body was in the ambulance, all the time. yes, in one way or another, my consciousness had left the body when i moved into that tunnel…. but, it was still me who was in that tunnel, and it was me who visualized and saw in the tunnel, but my body was left there [in the ambulance]. mmm, so for me, in that, in what i experienced then, there was not any end…but, if i had continued another few minutes, then i would have seen the end of the tunnel. participants’ descriptions of full or partial disassociation from their body is, thus, on the far end of the spectrum that frank (2013, p. 33) describes as “body relatedness:” their sense of of “i” with respect to their identification with corporeal identity temporarily diminished fully or in large part within a remembered context that is paradoxically within and beyond space and time. as such, participants remembered being fully alive and conscious, but also limitless without constraints imposed by their bodies in an environment which also seems to be of the same nature: limitless, with no borders, highly alive, and conscious. theme 4: contrasting views of life and death before and after the nde anders, bertil, and sven each explained that prior to their ndes, they had thought that when life ended, it was like falling asleep and never waking up again. (as noted above, john already had a belief in life after death prior to his nde.) their ndes completely changed their thoughts about existence beyond death, which, in turn, changed their perceptions of what life really is. following their ndes, anders, bertil, and sven (as well as john, but to a less extent) each re-evaluated their concepts of life and death, now believing that human existence consists of at least one more realm or dimension that one’s consciousness can experience. as bertil put it: this has totally changed my view of what death is. sure, one maybe has used words like, “if there is any life after death,” without knowing the deeper meaning behind it…. i have lived my whole life thinking that death is something frightening and was the end of life. then everything ceases to exist, but now, i see it differently. it [life] does not [cease to exist]. anders saw also life differently after his experience and explained it in this way: yes, this experience has changed my view about life, and i can say right away that i am not afraid of death any more, as i was before. yes, of course there is something there. it must be because how else could it have turned out like this.... but what is it then? bertil also came to realize that his earlier fear of death had an unconscious impact on his life, especially in relation to decisions he made throughout his life. his nde gave him pause to reevaluate past behaviors and to reconsider how he will behave in the present so that some things he used to do had markedly changed after the ndes, resulting in decisions and behaviors that were more conscientious, conditioned by fearlessness with regard to death: yes…and, even though i know that the other side exists, that i have been there, and i am not afraid of it, so i appreciate life more today than i did a half a year ago, and i believe it is that fear, which does not exist anymore. that fear of death is not there any longer. then i can actually appreciate more of what i have today. bertil further described how his new conceptualization about continuity of life after death had been revelatory: i have lived my whole life with a belief that death is something frightening and is an end and everything ceases to exist. that is not how it is. yes, it is like you are walking around your whole life with a certain perspective and abruptly realize that i cannot support this perspective any longer, and that is also something very disruptive. note that bertils’ change of perspective was immediate—that he “abruptly realize[d]”that he needed a change in perspective. similarly, svens´ testimony suggests a sudden change in perception, occurring just minutes after his resuscitation: that thought that i have been in a different place came already when they carried me out to the ambulance. it must have been somewhere before or between the resuscitation and the resistance, when i got that sense. a little later in the interview, sven explained that this realization fundamentally changed his view of life and what happens thereafter: this is knowledge. i know this exists…but i was only briefly there, and i cannot return, in my own control…. but definitely, something else exists… which is not this [the physical reality] in any way, and this has changed my view of what happens after this…. it is important to note that, according to sven and bertil, the perspectival shift occurred immediately, before they had much time to contemplate the meaning of what happened. while the rapidity with which the shift in worldview can occur might be common among those ex [qualitative research in medicine & healthcare 2022; 6:10241] [page 81] article no nco mm er cia l u se on ly periencing ndes, we did not notice it mentioned in scholarship on this topic. all participants also described an increased thankfulness and respect toward life, explaining that they felt more alive and aware. this led them to set new priorities after their ndes, such as focusing less on material items while focusing more on relationships, especially familial relationships. they also mentioned that they have changed as humans, becoming, for example, more vulnerable and sensitive and that they have started to reflect more on life and existential questions: yes, it has transformed me. i have become a…more sensitive human, yes. emotional, yes greater…. emotion to a larger extent… has a depth in another way… but likewise, it has changed my view… of what happens after this. yes, that little bit of anxiety i had before is gone. that does not exist any longer as, as like what happens after. well, well more sensitive, more thankful towards life. (sven) participants’ altered conceptions of space and time, along with their perceived relationships between self and body thus had far reaching personal consequences on their beliefs and behaviors moving forward from their ndes. interestingly, this altered conception of reality also seems to have happened quickly and within minutes of resuscitation as indicated by sven and bertil. discussion a worldview consists of an individual’s most fundamental beliefs regarding human existence, life and death, and reality (mcaninch, 2020; sire, 2009). in his influential model on existentialism, jeffner (1973) separates the worldview into three components: i) knowledge of self and the surrounding world, ii) central values, and iii) basic attitudes towards life. central values consist of the intrinsic rules and norms guiding a person's behavior and opinions on what is essential in life and what is good vs. evil, permissible vs. impermissible, and lawful vs. unlawful. basic attitude toward life, on the other hand, is more of a general view of life; while some look more positively on life, others have a darker perspective. knowledge of self and the world are the most fundamental of the three elements because it conditions the other two elements; if that knowledge changes considerably, a person tends to also change their central values and/or the basic attitude toward life to a substantial degree (see also, gustavsson, 2020). the findings of this study are consistent with what was found by van lommel et al. (2001) and other researchers (e.g., greyson & khanna, 2014) who have found associations between ndes and changes in central values and perspectives on death. in this study, however, we are particularly interested in understanding how the dominant themes found in participant interviews correspond with potentially sudden shifts in worldview resulting from changes in assumptions about reality (which, in turn, condition changes in values and attitudes) and how we might better understand those shifts as we engage with nde patients. the first three themes (another dimension, a real experience and not a dream, and being without a body) correspond with jeffner’s model regarding knowledge of self/world. those themes pertain to perceptions of place and one’s position in that place, i.e., “the other side” where there were no limitations regarding the physical body, space, or time. metaphorically, this can be seen as if the participants had been able to walk through a door and enter a room they previously did not know existed. participants interpreted this realm as an extension of reality, reflecting an expansion of perception regarding the structure of existence. bertil, for example, described it as being “there” without his eyes, yet he still recalled images from it. the first three themes in the data coalesced around participants’ description of this enhanced sense of reality, described in paradoxical terms: a tunnel with no end, decades passing in an instant, and movement without a body. this sense of enhanced reality resulted in the fourth theme: a changed worldview which, in turn, led to a realization that existence could also involve non-physicality and that death is not an end, but a beginning of something new. again, as bertil explained, the experience was like being at a train station where a person changes tracks to other destinations. this shift in knowledge about self and reality, in turn, affected each participant’s values and attitudes towards life and death in various ways, again, consistent with jeffner’s model. for instance, three of the participants also expressed a decrease in anxiety about death. this phenomenon has also been found and discussed by other authors and studies, for example, van lommel et al. (2001) and greyson and khanna (2014) who also found that survivors of traumatic events who had an nde reported greater spiritual growth than survivors who did not experience an nde. important to note, however, is that in this study, we found that the change of the worldview at least sometimes occurred very quickly after resuscitation, demonstrating rapidity of impact. this fundamental, potentially sudden shift appears to largely be the result of a new awareness—indeed, on could say a certainty—of some form of personal consciousness after death. neither sven, bertil, nor anders had previously held these existential beliefs before the ndes. for john, in contrast, the experience confirmed what he had previously thought was a possibility. thus, the change of the worldview was linked to a changed perception of what “death” means. without this shift in perspective, theme 4 (contrasting views of life and death before and after the nde) would have been unlikely to [page 82] [qualitative research in medicine & healthcare 2022; 6:10241] article no nco mm er cia l u se on ly emerge in the analyses with respect to sven, bertil, and anders. john, too, was changed by the experience, but in his case, he became more invested in a worldview that previously he had only thought was a possibility. in summary, participants of the current study perceived their ndes as unquestionably real, which, in turn, led to a fundamental shift in perceptions about self and reality, followed (immediately so, in the cases of bertil and sven) by a change in worldviews (see also facco et al., 2015; khanna & greyson, 2014; van lommel, 2011). implications for healthcare providers experiencing an nde has the potential to fundamentally change patients’ worldviews, usually leading to a loss of anxiety around death and a changed view of life. it has long been known that ndes have caused patients to reevaluate their lives (van lommel, 2001); however, as practicing physicians, our research has deepened our personal and professional understanding of how patients see the world—their world—following an nde experience. the focus of this study was to understand the meaning of nde experiences to better be able to communicate with and treat patients who have had ndes. ideally, by understanding patients’ interpretations of their ndes, we as practitioners will develop deeper, more informed means of serving our patients—not only those who have had ndes already, but also those who will have them in the future. based on our experience in writing this article, our primary takeaway message for healthcare providers—who may be the first person a patient meets after they have had an nde—is to remain open about the phenomenon (see also, somoilo & corcoran, 2020). from a clinical perspective, this means listening to what the patients say in their own phrases and language without judgment and knowing that ndes are a reality for the patient and that nobody has the answers of what causes the phenomenon. this study’s findings indicates that the change of the worldview is potentially fast or even instantaneous and is caused by a perception of what for patients is undeniably another existing reality. in contrast, van lommel’s study (2001) demonstrates that this experience most likely takes years to consolidate in the minds and lives of patients. it could be that both patterns are compatible, meaning that the change of the worldview can be rapid, even immediate, but that the full effect could take years for patients to process. we believe is important for healthcare providers to keep this in mind in their order to best support the processing of the nde for the patients. furthermore, by better understanding thematic patterns in patients’ nde narratives, healthcare providers can be ready to assure patients that their recollections are common so that they do not feel alone in their experience. this does not mean that we need to uncritically accept patients’ interpretations of their experiences, but rather, to demonstrate our openness as we listen to and share in their telling of what can be a defining moment in their lives. most significantly, we need to be aware of what it means for patients to fundamentally change their views on life, death, and reality so that we can help them adjust to their new perceptions without fear of rejection. as this study and others have demonstrated, ndes have the potential to change patients’ worldview about life and death. based on this study's findings, the change can be rather quick, occurring as early as only a few minutes after the awakening of the resuscitation. as such, a shift in worldview is potentially already manifest in the patient when the first meeting with a healthcare provider takes place after resuscitation. awareness of this possible sudden change on the part of the healthcare provider will most likely also affect how the conversation with the patient will unfold. perceived experience of another place that is equally real (if not more real) than normal, day-to-day circumstances reenforces patients’ understanding that there is something more to what most people consider physical reality, and that resulting perception will likely never be undone. therefore, it is also highly likely that this change of worldview is strongly anchored within the patient. this understanding is not anything that needs to be conveyed to each patient, but it is good to keep in mind when conversing with them, especially early on when the experience is still very fresh within the mind of the patient. following these observations, it seems likely that the situation is one in which the patient is most likely to be sensitive and vulnerable to external impressions. if the healthcare provider takes a more explanatory approach to the patient—for example, explaining his or her own medical beliefs about the phenomenon—there is a risk that the patient will respond with silence and avoidance. a more open and curious attitude by the healthcare provider would invite more of a dialog and an exploration of the experience together with the patient. this will facilitate the necessary process to incorporate and deal with this newly experienced perception, while reinforcing patient trust in their healthcare providers. another consideration is that the participants of this study often expressed an inability to convey the experience in the way they wished—as demonstrated by the hesitancy in forming sentences throughout the examples used above. two further quotes from sven and anders demonstrate their inability to verbalize their memories very well: “…a depth in a way…yes…i don’t know…i cannot really explain this, but honestly…no, it is thus…it is. it is maybe so, that my vocabulary is just too small to explain this… ” (sven), and “… that is... but i am sorry, no, but you know.... how to explain it” (anders). when trying to express himself, each participant did so in a cautious way with the use of circumscriptions, images, and analogies. this has to be remembered when meeting patients who had an nde in order avoid misunderstanding. indeed, difficulty in communicating about nde ex[qualitative research in medicine & healthcare 2022; 6:10241] [page 83] article no nco mm er cia l u se on ly periences might extend to family members, causing further stress and worry for patients, and this should be kept in mind among healthcare providers who interact with patients’ families. for example, although bertil and sven reported that their relationships with their wives deepened through discussion of their ndes, anders’ wife initially rejected his recalled experience. healthcare providers should, therefore, be aware of variable potential responses family members might express regarding patients’ memories and potential shifts in worldviews and how those responses might affect the mental and physical wellbeing of patients who experience ndes. finally, we concur with somoilo and corcoran (2020) that hospitals and health departments should offer lectures to their healthcare providers about nde and implement protocols for them to resort to when they are going to meet a patient having experienced an nde. the protocol should contain information about ndes and, preferably, a framework on how healthcare providers are expected to relate to patients and their families, with particular attention paid to radical changes likely in patients’ worldviews. for this to be realized, hospital and health department should appoint someone on staff with a particular interest in this topic as a point of contact for information and advice. strengths and limitations participants in this study all suffered scas, and their perceptions of ndes took place during the sca or in very close proximity to it. the fact that the interviews were conducted shortly after the scas can be considered a strength of this research, as it shows that the change of the worldview was detected soon after the scas (theme 4), linking ndes more directly to the sca. this change could only have occurred somewhere between the sca and the interview 10 weeks later, thus supporting our conclusion that the shift in worldview occurs very quickly— perhaps almost immediately. a limitation of the study is that there were only four participants all of whom were adult males of scandinavian origin. the goal had been to include six to eight participants; however, given the topic of the study, only a small number of patients met the inclusion criteria. this led to a rather homogeneous participant group with similar linguistic, cultural, and historical backgrounds so that that extrapolation of our results to other cases needs to be drawn with caution. a more heterogeneous group would have been preferred; however, all participants based on the inclusion criteria were included; thus, there was no selection bias. given the relatively few participants of this study, and the homogeneous composition of the participants, future research should investigate a diverse sampling of other patients who have experienced scas and ndes with a similar methodological approach to get a larger, more heterogenous participant group for comparison analysis. conclusions as a final note, we wish to express our gratitude for the patients who shared their experiences with us. this article would not have been possible without their trust in our ability to listen, understand, summarize, and interpret their stories. references agrillo, c. (2011). near-death experience: out-of-body and outof-brain? review of general psychology, 15(1), 1-10. cassol h., pétré , b., degrange, s., martial, c., charland-verville, v., lallier, f., bragard, i., guillaume, & laureys, s. (2018). qualitative thematic analysis of the phenomenology of neardeath experiences. plos one 13(2), e0193001. dahlberg, k. (1995). qualitative methodology as caring science methodology. scandinavian journal of caring science, 9(3), 187-91. de vries, j. w., bakker, p. f., visser, g. h., diephius, j. c., van huffelen, a. c. (1998). changes in cerebral oxygen uptake and cerebral electrical activity during defibrillation threshold testing. anesthesia & analgesia, 87(1), 16-20. facco, e., agrillo, c., & greyson b. (2015). epistemological implications of near-death experiences and other non-ordinary mental expressions: moving beyond the concept of altered state of consciousness. medical hypotheses, 85(1), 85-93. frank, a. (2013). the wounded storyteller; body, illness, and ethics. the university of chicago press. gadamer, h. g. (1989). truth and method. sheed and ward. gopalan, k. t., lee, j., ikeda, s., & burch, c. m. (1999). cerebral blood flow velocity during repeatedly induced ventricular fibrillation. journal of clinical anesthesia, 11(4), 290-295. greyson, b. (2003). incidence and correlates of near-death experiences in a cardiac care unit. general hospital psychiatry, 25(4), 269-76. greyson, b. near-death experiences. (1994). in r. corsini (ed.) the encyclopedia of psychology, pp. 460-462. wiley. greyson, b. & khanna s. (2014). spiritual transformation after near-death experiences. spirituality in clinical practice, 1(1), 43-55. gustavsson, c. (2020). existential configurations: a way to conceptualise people’s meaning-making. british journal of religious education, 42(1), 25-35. jeffner, a. (1973). livsåskådningsforskning. (research on theologies of life). uppsala universitet teologisk etik med religionsfilosofi. khanna, s. & greyson, b. (2014). near-death experiences and spiritual well-being journal of religion and health, 53(6), 1605-15. kemp, p., kristenson, b. (1989). toward a narrative ethics: a bridge between ethics and the narrative reflection of ricoeur. in p. kemp & d. rasmussen. (eds.), the narrative path. the later works of paul ricoeur (pp. 65-87). the mit press. lindseth, a., & norberg, a. (2004). a phenomenological hermeneutical method for researching lived experience. scandinavian journal of caring science, 18(2), 145-53. mcaninch, s. (2020). worldviews matter in medical practice. southern medical journal, 113(3), 99-103. moody, r. a. (1975) life after life. mockingbird books. [page 84] [qualitative research in medicine & healthcare 2022; 6:10241] article no nco mm er cia l u se on ly parnia, s., waller, d. g., yeates, r., fenwick, p. 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(2022). life after death: a narrative exploration of near-death experiences, omega— journal of death and dying, 0(0), 1-15. schwaninger, j., eisenberg, p. r. schechtman, k.b., & weiss, a. n. (2002). a prospective analysis of near-death experiences in cardiac arrest patients. journal of near-death studies, 20, 215-32. sire, j. w. (2009). the universe next door; a basic worldview catalogue. intervarsity press. somoilo, l., & corcoran, d. (2020). closing the medical gap of care for patients who have had a near-death experience. narrative inquiry in bioethics, 10(1), 37-42. van lommel, p. (2010). consciousness beyond life. the science of the near-death experience. new york, ny: harper collins. van lommel, p. (2011). near-death experiences: the experience of the self as real and not an illusion. annals of the new york academy of sciences, 1234, 19-28. van lommel, p., van wees, r., meyers, v., elfferich, i. (2001). near-death experience in survivors of cardiac arrest: a prospective study in the netherlands. lancet, 358, 2039-45. erratum in: lancet, 359, 1254. woollacott, m., peyton, b. (2021). verified account of near-death experience in a physician who survived cardiac arrest. explore, 17(3), 213-219. world medical organization. (1996). declaration of helsinki. british medical journal, 313(7070), 1448–49. [qualitative research in medicine & healthcare 2022; 6:10241] [page 85] article no nco mm er cia l u se on ly https://www.ncbi.nlm.nih.gov/pubmed/11755611 https://www.ncbi.nlm.nih.gov/pubmed/11755611 https://www.ncbi.nlm.nih.gov/pubmed/11755611 layout 1 [qualitative research in medicine & healthcare 2018; 2:6996] [page 45] introduction the church means many things to different people in the faith community. some would describe it as a home, culture, network, organization, or family. all these descriptive words give a glimpse of the church’s role in individual lives and how the presence and interaction with others of similar beliefs may provide a sense of belonging and support. the purpose of this study is to gain an understanding of the role of the church as social support and how it contributes to its members’ emotional, psychological and social wellbeing in modern-day society. the genesis of this project began with my interest in the relationship between the church and wellbeing. koening1 discovered that religion may serve as a psychological and social resource, which provides its community a sense of meaning and purpose, an optimistic and hopeful view of life, and a sense of control over circumstances. salsman et al.2 found a positive correlation between religion and health: the more religion or spirituality, the better the health outcome; such as emotional wellbeing and less general distress, depression, anxiety, and other distress from chronic illness. park3 supported these findings and argued that religion may provide intrapersonal and interpersonal support to cope with significant stressors such as chronic illnesses. this study extends this insight to examine the ways in which how social support is provided by the church. in the following sections i review relevant literature on the nature of social support in religious contexts and provide a conceptual framework, and then i present findings and a discussion to interpret my data. finally, i end with some challenges i encountered during this study and directions for future research. what’s religion got to do with it? research suggests positive mental health outcomes result from religious involvement. for example, multiple studies have found the church provides social capital, which contributed to emotional functioning and less depressive symptoms in the african-american community.4-7 additionally, in india, gupta, avasthi, and kumar8 found that there was a positive effect of providing religious elements our family portrait: the church as a model of social support liza ngenye department of communication, george mason university, fairfax, va, usa abstract the church means many things to many people. some would describe it as a culture, network, organization, or family. the purpose of this study is to understand of the role of the church in providing social support to individual church members and to uncover meanings prescribed by individuals about the nature of social support in the church. i analyze the context in which church practices are embedded, the processes of creating social support, and the meanings of church-related activities and gatherings that contribute to social support. the study examines how the health-related needs of church members are not only physiological but also accounted for in emotional, psychological and social terms. by using metaphor as a framework for interpretation of members’ meanings, my analysis of social support is broadened to include religious contexts. this study adds to growing literature on the connection between religion, communication and health. correspondence: liza ngenye, department of communication, george mason university, 4400 university drive msn 3d6, fairfax, virginia 22030, usa. tel.: 703.993.1090. e-mail: lngenye@gmu.edu key words: church; social support; family; health communication. conflict of interest: the author declares no potential conflict of interest. funding: none. dedication: this article is dedicated to lois ngenye, the author’s mother, whose spiritual support has been a source of inspiration. acknowledgements: first, the author would like to thank the journal’s editor and reviewers whose feedback strengthen this paper tremendously; secondly, the research participants and congregations that made this project possible; and finally, the author would also like to thank timothy gibson and gary kreps for their guidance in research. received for publication: 15 august 2017. revision received: 23 february 2018. accepted for publication: 24 february 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright l. ngenye, 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:45-54 doi:10.4081/qrmh.2018.6996 qualitative research in medicine & healthcare 2018; volume 2:45-54 no nco mm er cia l u se on ly in the treatment of depression. there are longitudinal studies that support these cross-sectional findings.9 one multigenerational study of mexican americans found religious attendances reduced depression10 and another 3-year study of african americans found that those who attended religious services more than once a week reported less psychological distress and reduced risk of depressive disorders.11 empirical research suggests three somewhat controversial conclusions: i) non-religious individuals are at a greater risk for depression; ii) religious individuals are at a lower risk for depression; and iii) participation in religious activities reduces the risk of depression.12 blazer’s empirical framework proposes a connection between religious involvement and support for emotional, psychological and social wellbeing.12 that suggests regular church attendees experience less depressive symptoms overall but that doesn’t answer the question of how this phenomenon takes place. a few theories suggest concepts which explicate this phenomenon. the explanatory religion-health meditational model examines the role of specific mediators such as coping, social capital and selfefficacy towards greater mental health outcomes.5,13 the theoretical and empirical studies reviewed above refer to specific individual-level traits such as religious beliefs and religious identification as an explanation. there is, however, a gap in understanding how social interactionism, group-level dynamics such as context, social processes and organizational structures, are the basis of social support in the church. the theory of social integration posits, the size of a community, frequency of interaction, and perceived support from social communities, which affect positive wellbeing.14 the implication of social integration is that regular church attendance, religious services and activities create opportunities for the formulation of friendships between people who share similar values, interests and activities.9 social integration, having friends in church who are available to offer advice and caution, could help individuals avoid negative experiences such as economic or legal problems by providing a sense of predictability and stability in one’s life situation.14 in this article, i expand on previous research to explore how the social and organizational framework of the church is the basis of social support for individual members. however, the widely-used concepts of coping, social capital, self-efficacy and social integration will not be used, instead the theoretical focus of this study is social support. the current conceptualization of social support is broad, for it is defined as the availability of psychological, material, and social resources from close relations such as family and friends.14 research supports the notion that social support is more accessible in religious communities that promote compassion and kindness, especially to the underserved; many churches seek to ameliorate the effects of poverty, needs of youth and families, and provide health services.9 social support in the church comes in various forms such as counseling, tangible aid such as goods and services, and spiritual and socio-emotional support such as prayers, visitations, comforting and companionship.9 the concept of social support has shaped the research goal of this study by focusing my attention on how exactly the church provides social support to its members, especially through the social and organizational framework of the church as the basis of social support. this perspective offers a social, contextual dimension of the supposed relationship between the church and individual members. the first goal of this study is to understand what social support in the church means to individual members, this describes the meanings and context of social support in the church. the second goal seeks to uncover the social and organizational structures that provide social support to members, this involves the social processes in the church. this study will unpack the contextual environment of the church and the social structures of creating social support in the church among individual members (figure 1). the following research questions organize my inquiry: rq1: how is social support in the church defined? rq2: what are the social and organizational structures of social support in the church? rq3: how do the social and organizational structures provide social support in the church? my toolbox in the anthropologic theory in clyde kluckhohn’s mirror for man15 a similar away of thinking, feeling and believing is described as a culture. therefore, faith could [page 46] [qualitative research in medicine & healthcare 2018; 2:6996] article figure 1. conceptual framework. no nco mm er cia l u se on ly be considered a culture and the faith community would be a culture-sharing group. a ethnography is the most appropriate qualitative research approach to describe the issues, beliefs and behaviors of a culture-sharing group.16 the purpose of a ethnography is to describe and interpret a culture-sharing group and draws from research traditions of anthropology and sociology.16 the ethnography of communication offers a system of concepts that can be used to conceptualize the basic phenomena of study such as culture, which represents a group of people who share rules for using and interpreting a communication practice. as communities of people gather in communication they conduct themselves in pattern ways of speaking that identify which community they belong.17 data gathered from an ethnography provides rich descriptions and major themes about a culture-sharing group.16 following an interpretative research paradigm,18 i endeavor to analyze meanings made by individuals about themselves and their social life. these meanings reside in individuals and can be discovered using qualitative interviews, which are structured conversations to explore participants’ experiences and beliefs, with the aim to developing an understanding of how they interpret their lifeworld.19 drawing on these methodologies, i conducted eight interviews from march to may 2017. using purposive sampling, the participants were recruited from a church located in virginia and the participants ranged in age, gender and race. my interviewees were a pastor, a pastor’s wife, one elder, two ministerial leaders, and four church members. the one-on-one, audio-taped interviews took 30 to 60 minutes, and one interview with two participants took two hours. all participants gave their informed context, confidentiality was maintained, and identities concealed to prevent any unforeseeable risks in participating in this study, such as the breaking of social bonds and relationships in the church. this research project received institutional research board approval. as a regular church member, the researcher had established relationships with the participants and was able to gain access and collect extensive data. although the sample size was small, there was sufficient data gathered to identify patterns of discourse. the sample size did not hinder the goals of interpretative qualitative research, as these findings are not to be generalized to the larger population, but rather provide rich detail of a specific context. i will discuss the challenges of recruiting participants below. the interviews covered questions concerning church life and participation. the interview script was divided to four sections: i) how they joined the church; ii) what support they received from church members; iii) experiences in church life; and iv) what church community meant to them. church leaders were asked additional questions related to their leadership role. the interviews provided 76 double-spaced pages of transcripts. these transcripts were analyzed using open coding20 following a constructivist approach to building grounded theory. the open coding process allowed broader sense of the data developing a cohesive interpretation of the findings. the next section is a presentation of the major findings and demonstrates this commitment to robust and saturated data in the verbatim quotes from the interviews. church life 101 before we move on, i will provide some background to understand the basics of the organization in many churches. every community has a leader and in the church this leader is usually the pastor or priest. in order to the execute his or her duties, the pastor delegates many responsibilities to other leaders called elders and deacons; these individuals oversee the community and, in many churches, the community is broken down into smaller groups called ministries lead by them or other appointed leaders. this organizational structure comes from the apostle paul’s detailed description found in 1st timothy 3:1-13. church membership occurs two ways, by birth or by initiation. in many churches, church membership is not permanent but subject to certain terms and conditions such as attendance, paying of tithe, fulfilling sacraments, and maintaining good conduct; these terms are communicated during the initiation process. an interesting story of good church conduct is recorded in acts 5:1-11, whereby a husband and wife died for noncompliance; after lying about their mismanagement of church-dedicated funds the church leaders warned the punishment was their sudden death. church life is formulated and maintained through social gatherings such as weekly worship services, observance of holy days, and mid-week fellowship such as bible study. there are other activities that are tailored to specific demographics such as women and men’s ministries, and children’s programs. the first churches were led by social activities, the record states, they continued steadfastly in the apostles’ doctrine and fellowship, in the breaking of bread, and in prayers (acts 2:42). church life is the center of life for many church members. we are family in my interviews, i wanted to understand the background of my participants; who they are, what their childhoods were like, and most importantly what family meant to them as it related to the church. in this interview with a young female graduate student, she described her childhood as it related to her relationship with the church: my mom had gone to church with her neighbors as a child and not really with her family but her family was kind of, like they would say they were christian but they didn’t really go to church as a family and then my dad went to church with his parents, a methodist [qualitative research in medicine & healthcare 2018; 2:6996] [page 47] article no nco mm er cia l u se on ly church, but they didn’t really go to church with us. so, they would both say that they’re christians, but they didn’t really, going to church wasn’t really an important thing…my parents started dropping me off at the church on sundays and so i would go from the time i was in 5th grade to church alone every sunday, my parents would drop me off and pick me up after, and we did that all the way till high school. and a couple of times i would talk to my parents about like, ‘why don’t you go with me?’ like, ‘this is something you could do too…everybody else’s parents go with them like why don’t you go with me?’ and my parents were, my dad was kind of aversive to it, but my mom would say, ‘i can’t go because of your sister’…and that’s ok. that’s how it was for me. but i’m really glad that i got to go. and then, through growing up in college, i ended up continuing going to church and it’s just been something i’m comfortable with, walking into church alone because i never had an experience really different from that until i started going with a boyfriend. the role of parents in initiating their children to church life is the genesis of social integration. other participants i talked to re-echoed that their parents intentionally made that decision for them, and that parental decision became so influential that they decided to continue attending church today. people come from various families and enter into a larger family in the church: this is what defines belonging to a church family. in this except a woman in her fifties describes what belonging to a church means, specifically how it allows people to offer support during trying times: i lost my mom and i felt like i had the support of the church with their prayers, with their calls, with their cards, with praying and lifting me up and checking on me. part of belonging to a church is having an extended family where you feel like you belong to a community of people who actually care about you and care about what happens to you. so, if something were to happen, especially in the church where i came from before my current church, i felt like that was family where if something happened or were to happen that i really needed someone or something that i could lean on my church family. i felt support, especially when my mom passed. everyone was so caring and so helpful and wanting to do something to help make things better, or make you feel better, you just felt like you had a family to lean on, i felt the church’s support most recently when my mom passed. when individuals join the church, they are adopted by new parents. the pastor is the head of the church family. his role, as accorded by members and scripture, is that of a parent that oversees the wellbeing of the church family. one of my participants talked about her youth pastor and the role he and his wife played in her childhood: so, chris was not the head pastor at our church, he was the youth pastor, so he was in charge of the middle and high school students but because he was in charge of the middle and high school students. he was very specialized in working with our age group, so he knew kind of the problems that we would go through, he also knew that it wasn’t going to be intellectual things that he was going to be talking about every week, it was also going to be keeping our attention, meeting us where we were as kids can change, kids can change in the course of one sermon right? (laughs). and he was the type of person that made you feel like you could ask any question and it wouldn’t be wrong, it wouldn’t be stupid. but, he also made you feel like you wanted to ask the types of questions that he, that only he could give you the answer to and i realize now, that any pastor could give you the answer really, but from that time he was like the authority that i saw. and april, april was supportive of not just chris, but of everyone in the group and so if you felt like you couldn’t ask chris a question because you couldn’t ask in the big group, april was someone you could go to one on one and she was just so just sweet and she made it, this interaction where there was no judgment. you could get the information you needed, or you could tell her the problems in your life and you didn’t have to worry ever. it truly was that she was there to strengthen. and so, you never had to worry with these people about being torn down in anyway, which is really hard to find, there aren’t very many people in the world like that and so to have that was incredible. like i can’t even describe how incredible that is…it’s about i’m here for you whenever you need. and i think that’s what a church should be… another responsibility of the pastor, as a parent, is to protect his members from possible threats that may harm their spiritual, mental and social wellbeing. i spoke to a senior elder who shared a scene when the pastor protected his members from a threat: unfortunately. and the church is a lot like that. you know achans in the church, people who fornicating left and right, and that affects the entire body. and so, what are you going to do? you have brothers in the church who are predators. they just working these young ladies, they’re tall, attractive, handsome and they lie to them, deceive them, get in bed with them, treat them like throw-away. and so that causes other problems. next time she meets a guy, you know what he has got to go through because she’s done with this one…and the next time he meets a girl you know…so it’s a terrible cycle in the church. i remember our pastor knew a guy who had that reputation and he started coming to ###. pastor meet him right out there, he says ‘i don’t want you coming to this church, i know what you do. i do not want you here.’ the guy left. now if he was serious about his life, he would have said, ‘well pastor i’ve changed, i’m not going to do that, i’m not going to prey upon your females in the [page 48] [qualitative research in medicine & healthcare 2018; 2:6996] article no nco mm er cia l u se on ly church,’ and he would stay. he left. so that’s a shepherd who’s concerned about his church, who’s aware of the weaknesses of his sheep and is seeking to protect them. not every pastor does that. not every pastor is interested enough to be aware of the wolves that lurk out there. in this quote, we see the metaphor of shepherding to describe the protective nature of a religious leader and his responsibility to secure his congregation. as a shepherd, a pastor needs to be aware of threats that may undermine the physical, emotional and spiritual wellbeing of his members, but that can only be known if the pastor is aware of his members’ weaknesses. in this instance, the pastor was leading a church of many affluent single women who were looking for life partners, the pastor had to protect their vulnerability by ensuring safe partnerships and keep out those who would deter their ability to discern healthy relationships. it is not possible for the pastor to successfully execute his role as a parent and shepherd if there is a lack of awareness of his children’s needs. although church leaders may be responsive, wanting to take proactive measures to deal with issues, they are inhibited by unawareness. subsequently, this causes many people to leave the church. the church that i investigated was fairly large, almost thousand registered members, and the pastor i spoke to had this to say: researcher: sadly, many people don’t get help, it’s just the nature of the church, maybe they fall through the cracks, we don’t know what they need, they just disappear from the system. have you witnessed someone disappear from our system, you don’t know where they went, what happened to them? pastor: yeah it happens all the times. sometimes people are very secretive of the issues they’re facing, and rather than share it to anyone, open up to anyone, they just quietly leave the scene and then all of a sudden you discover that they are no longer around. because, unless the need is expressed, the desire for counseling for help is expressed, sometimes you can’t just read body language or facial language to determine that this person has such and such needs. so, these individuals who are either very private or very secretive, sometimes they do fall through the cracks because no one really knows the kind of trauma they’re experiencing, so they don’t provide them with help that could be forthcoming. researcher: how does that make you feel as a pastor? pastor: i feel badly because spirituality is not all that people need. we are created as harmonious creatures: mental, physical, social, spiritual and all of the dimensions of the human being must be met, must be satisfied. if one is overly spiritual, and he’s having mental problems or emotional problems or social problems, then that person becomes unbalanced so it makes me feel sad when i recognize that balance is not being created or people are not helped to live a balanced life and the church doesn’t provide for all the dimensions of the human being. similarly, the elder also agreed. he gave an explanation of why it was impractical for one individual to cater to all the needs of a thousand members: one person i can think of who had…became disenchanted for some reason, with the church…or maybe going through something…i can’t remember exactly what was his issue at this point. but he did not, he stopped coming for a while…and finally, i just…a guy who i knew grew up in the church, doing pretty well. i just happened to call him or see him and said, ‘how are you doing?’ he said, ‘well…i’m getting ready to leave the church.’ i said, ‘the organized church? why?’ he said, ‘well i’ve been gone for the past…the pastor hasn’t called me, or come visited me.’ i said ok. and actually, i went to the pastor and said, ‘look there’s this person who has not…’ he (the pastor) said, ‘### look, i got a church of a thousand people. call the brother. i can be going around holding people’s hands. so, if you are committed, then be committed.’ but…you know…so…with that many people… and this is why we have the church structure organized so that we have 22 elders, each elder has a certain portion of the congregation assigned to them, supposed to call and be in contact with, so that if those people are missed, it’s your responsibility to get them. and…you know…so unless…so the pastor is not the one who supposed to contact everybody and know what everybody is doing. the other thing you have is, there are people who have problems who never call the church. so, someone says, my wife says to me, ‘this lady, you know, she was sick, she was off.’ i said ‘did she tell anybody?’ she says, ‘no, she’s very private.’ i said, ‘oh. how are people supposed to know?’ so, there are people like that in the church, who will not share their issues. they may have cancer, they may have loss of job, but they don’t share…and they say nobody called me, nobody comforted me. well nobody knew. or they’ll say pray for me but don’t tell the elders, don’t tell the deacons. well what can we do with that, when you have that? the identification of needs is another challenge to church leaders. many pastors are not trained in mental health counseling as part of pastoral training, the elder i spoke to confirmed this. i asked the elder what process or method they used to identify the needs of their members. the process he described is the discernment of spiritual needs from psychological needs, that closely resembles a type of filtration. in this process, the church leader assesses if the needs are spiritual, if so they offer spiritual counsel; if the issues involve other emotional struggles they attempt offer advice. this elder provided a scenario to illustrate this process: [qualitative research in medicine & healthcare 2018; 2:6996] [page 49] article no nco mm er cia l u se on ly elder: because you may have a pastor who has none of that training. so. the pastors come…they all say they’re been trained in theology. but it’s based on their interest, that they would be involved in mental health…counseling. pastors don’t come with counseling skills automatically. so, unless they are willing to go that route. you know pastor ### was trained in theology and administration. and he also on his own did the counseling, but not all pastors have that training or desire it. it’s not a pre-requisite for pastoring (laughs). researcher: so, what happens then? you just learn on the job or what? elder: you learn on the job because you get to know, they are people you love and they come to you with problems and you really sit and say i really don’t know how to help this person, i need to get some help and so on their own basis, based on the pressure of situations where they’re not helping people with their own problems they go out and get that training. but unless they have that sense of responsibility…they say go to this person, go to that person…they themselves never get trained. so, you have all kinds of pastors, but counseling is not a requisite for getting a pastoral call. researcher: i think you mentioned instances where you’ve had to call professionals, and earlier you said a lot of these mental issues come from spiritual problems. is there a clear distinction between, ok this is a spiritual issue we just need, you know spiritual guidance, versus you know this has gone this direction maybe we need a professional? is there some clarity as to where one starts and where one ends…? elder: when you start with, ‘what’s the problem? where hurts? where are the pain points?’ from there you begin to glean, oh yeah, i can help or i can’t help because this is deeper than i can do. i had one couple came and they both came they wanted counseling and the symptoms that was manifested there was no way to get out of it. he was unemployed and was in a situation where he was almost unemployable because of lack of skills or interest in doing things. and so, i know for a female having a man who you know you need to support and having kids, i mean, ‘you are the man you gotta get a job. you gotta get one quickly! you’re not getting money to support your family.’ that is the issue. so, we can go wherever but until that thing is removed…you know she would appreciate if you could go work at mcdonalds but you’re not doing that… that’s not my thing. so, she came back and she says, ‘look i need to talk to you.’ i said fine and we made an appointment and she said, i’m not interested in a relationship anymore. i said is there anything i can say? she said no. so, i said if we sit here and talk for the next half hour we’re wasting time? she says yes. ok well, i don’t want to waste your time or mine (laughs) and that was the end of that…so, you have, i mean…human beings get untangled in issues. we create so many problems… even if church leaders were aware of needs, the last hurdle they faced was unwillingness or lack of commitment of individuals to their own self-improvement. unwillingness was described as the last barrier preventing the leader’s ability to sufficiently cater to the needs of members in the church. the elder continued: relationships take work and unless you’ve been putting in the time, it’s going to fall apart. and when it falls apart and you realize it, you still have to put in that same time…a lot of people its ignorance but it’s ignorance plus impatience…they just don’t want to do the work. and what other problems people come with mental, physiological, spiritual they do not want to do the work. and often that is the biggest problem. they don’t want to do the work that it takes. and so, somebody telling me, ‘i can only come on sabbath,’ brother…this is not going to work (laughs) it’s not going to work period. ok? another element in church life was food. the role of food is central in many social structures. the church provides food for its members called spiritual nourishment. spiritual nourishment comes from various parts of the church service. when i spoke to one church member, she vividly described how important spiritual nourishment was to her livelihood and times when the spiritual nourishment isn’t received in church: church member: as a christian now and my connection to my particular church, or church in general, i think i live a very stressful day-to-day life with my job, with day-to-day chores and family and juggling and doing everything, and i find such peace and calm and joy when it comes to that time of the week when i drop everything, i drop work, i drop all the stresses, i literally drop them, and i focus on worship. it’s like a rejuvenating thing for me, i really enjoy going to church, from sabbath to sabbath, when i stand up to pray, everything else, all the stresses my joy, family, juggling, and everything else any other pressure that i have, literally just falls to the side, and all i focus on is praising. so, for me it’s more for rejuvenating the feel i get when i go to church on sabbath, on a saturday morning when i go to church, i do it because, it actually makes me feel rejuvenated and that’s the truth. researcher: when you said that when you come to church you feel rejuvenated, fresh, what about church helps you feel that way, what in specific? church member: i love to sing. i love the sermon that is like the meat and potatoes in the service, but before you get to the meat and potatoes, sometimes you come in and you’re tense because of the week that you’ve had and for me, music is a stress-reliever when there’s a song that’s being sung and it reaches my soul, music does it for me like 90% of the time. and like i [page 50] [qualitative research in medicine & healthcare 2018; 2:6996] article no nco mm er cia l u se on ly said the meat and potatoes, if i came to church and found that all they were doing is singing that would just not be enough because the meat and potatoes is the sermon so i want to hear the word, i want something that is going to encourage me, something that is going to take me through the week so i need to hear a sermon, i need to hear a word, i need to hear something that is going to encourage me through the week to face the stress that i know i’m going to face sunday through friday and dealing with the pressures of my job, dealing with family issues, dealing with just life in general. so, when i come to church and a song, special music, praise and worship, an encouraging word from the pastor, something that’s going to make me unwind and distress and encourage me through the week and right off the bat – a song. researcher: has there ever been a time when you came to church and you didn’t feel that way? has that every happened? church member: certainly. not a lot. but there are times in the past and not necessarily at ### church where i’ve been to a church and felt like there wasn’t much that i had to grab onto or hold onto. but what i do when i go to the church i honestly try to find one thing, some people don’t get it from a sermon, or even from a song, some people might get it from a scripture reading, or i don’t know. i try to get it from something…there have been times when i’ve been to church and didn’t feel fulfilled or satisfied that i got enough. and sometimes when there are days or times like that, it was because i didn’t prepare myself and didn’t do anything through the week, i didn’t feel myself through the week so i was spiritually empty so when i got to church, i was looking for someone to fill in the spiritual void that i had not been filling in through the week, so when i went to church looking for someone to fill me, they couldn’t do it because i was too empty. the thing about going to church on sabbath and being filled is you have to continually be feeding and nourishing yourself, you can’t be totally starved and there are times when you’re totally starved and you go and get filled but if you’re totally, totally starved and there’s nothing inside and you’re empty, it’s less likely that you’re going to be filled when you go, so you have to be feeding yourself. and there are times when i felt like i didn’t get much was probably because i wasn’t feeding myself or nourishing myself during the week. discipleship and hospitality are two concepts that describe the social interaction of the church family. in a church, there is an expectation for members not only to receive nourishment but also to nourish the needs of others. discipleship is the activity of learning how to nourish others and nourishing others is referred to as hospitality. both these concepts puts church members in an active role to reciprocate with others what they’ve received from leaders. here is an example of discipleship in a men’s ministry: elder: you would have men cry cause they shared their problems and they were overwhelmed by the emotional impact it was having on their lives and sharing. and so, we have a very strong men’s ministry program. very strong. we have a retreat we go to each year, over a hundred guys they show up, we normally go there to virginia beach and it is very, very helpful. again, we don’t spend time whining, we were just sharing what is the victory because…these meetings can easily turn into a complaint session or grievance session…so, men speak openly, ‘i’m into pornography, i know it’s a problem, i need help’ and so people pray for folk. so, it’s real problems that folk are dealing with…in the church… the place where discipleship and hospitality take place is within smaller groups called ministries. in my interviews, i discovered that different ministries were all similar in the purpose of discipleship and hospitality. the church member whom i spoke to in the interview extract below was very active in several ministries and explained why involvement and the nourishing of others, hospitality, is important: church member: i’ve been involved in church ministry since i was 13 till now, and i’m no longer 13 i’m much, much way past that, i have been involved in every aspect of the church…so, i was an interest coordinator, i was a sabbath school secretary, i was a church clerk, and in every role, i’ve played in church, and i’ve done other roles, the most, the role that really, i’ve been consistent in every church that i’ve ever been to, is singing. i sing on the choir, i sing on the praise team, and i’ve always done that because it’s something that i love to do. researcher: so obviously, this is unpaid, this is completely voluntary, what has motivated you to be so active in church? church member: to me it’s a way of giving back to god just, it’s not giving back to god, it’s a way of giving to the community, a way of serving. i see myself when i’m greeting at the doors on sabbath mornings as doing a service for my church for myself actually, because it makes me feel good, it makes me feel like i’m giving back and doing something and doing a service to god. it feels like i’m thanking him as i’m serving whatever capacity it makes me feel like i’m doing it, not to man, but to god. my motivation is just a way of giving something back, my thanks for everything that god has done for me, so when i sing when i’m in the music ministry or greeting ministry or whatever department that i serve in, it’s just a way of just giving back, a small way of giving back and saying thank you and playing some kind of role, service, to the church and to god. there is a special individual in the church who mastered the art of hospitality and modeled the standard of [qualitative research in medicine & healthcare 2018; 2:6996] [page 51] article no nco mm er cia l u se on ly hospitality for the church family. referred to as the ‘church mother’, this de facto leader used her personality and skills to cater to a variety of needs in the church. the individual is usually an older female who is very influential in the life of the church. i did not have the opportunity to interview a church mother, i assumed that her identity was somewhat concealed; however i talked to an individual who was greatly influenced by her. my church mom she sings on my choir and she’s just the motherly type…i joined the choir because i love to sing and when i joined the choir there was a lady in the choir, my church mom like i said she’s like everyone’s church mom probably, but she was very caring, she would be very concerned, she would pray, she would send me texts in the morning, worship and devotional texts in the morning and she would just pray for me and asking how i was doing and how is my family…she made me feel very welcome, she prayed for me, my family, my children…when she said she was going to pray for you she was really going to pray for you and that’s how it started, she was praying for me. and i realized that when she would call me and she would pray for me, and she continued to pray for me, and it turned to be a relationship where she would send me devotionals, she started praying…i just call her my church mom and i’m sure other people do, she’s just a caring woman. but i don’t want you to think she came and found me, i actually found her in the choir. in the next section, i offer an interpretation of the interviewee accounts through the theoretical lens of social support in the church community. our family portrait the mission statement of the church i attend has the motto we are a family of believers. the first six words shouldn’t be taken at face value. the first two words we are represent identity, the next two words a family describes the peculiarity of the community, and the last two words of believers is what unifies, the beliefs and doctrines held by individuals. who we are and what we believe are crucial to what we think about family and church. to unpack my findings, i discussed the data under the metaphor of a family. the family metaphor describes the hierarchical structure of the church organization, and the church’s role to provide various resources of social support, serving as the individual’s center of life. the use of metaphor plays an integral role in research. for one, most of our conceptual system is metaphorical in nature as we use metaphors to structure how we perceive, how we think, and what we do; human thought processes are largely metaphorically structured and defined.21 secondly, the use of metaphors, specifically ontological metaphors, allows us to comprehend a life variety of experiences with nonhuman entities in terms of human motivations, characteristics, and activities.21 when researchers dialogue about religion, spirituality and church, these conversations can become convoluted. therefore, the use of personification, seeing something nonhuman as human, allows for us to make sense of phenomena in human terms, giving us explanatory power.21 finally, the use of metaphors allows researchers to focus on one aspect of a concept and keep away from other aspects that are inconsistent.21 especially in research, it is easy to lose sight of the scope of a concept and all the related entities that it influences and affects; the use of metaphors prevents this unproductive impasse. it is for these reasons that i chose to use the metaphor of a family as a lens to research the church: to focus, explain concepts and processes, and address specific areas of inquiry. what can we understand about the church by comparing it to a family? one, we are able to conceptualize the social and organizational structures and dynamics involved in church life. two, we can better understand the interpersonal relationships, social and emotional natures, that form the core of church life. three, we can accept both positive and negative findings about the church. because family life is messy, we accept that church life is messy; therefore, we can interpret individual cases in the context of larger outcomes of the social wellbeing of church members. our expectations are better realigned with the social reality experienced in the church community. the theory of social support explains the social interaction of church life. a social group is defined as two or more individuals who share a common social identification of themselves, perceiving themselves to be members of the same social category.22 this definition stresses that members of a social group seem often to share no more than a collective perception of their own social unity and this seems to be sufficient for them to act as a group.22 the group is formed by psychological interdependence; satisfaction of needs, attainment of goals, or consensual validation of attitudes and values. this interdependence leads to cooperative social interaction, communication and mutual influence between individuals.22 the church fits the description of a social group such as a family. the commonplace definition of social support is the availability of psychological, material, and social resources from close relations such as family and friends.14 more specifically, social support is information leading a person to believe that he or she is cared for and loved, esteemed, and valued, and that he or she belongs to a network of communication and mutual obligation.23the extension of these definitions can be placed on the recipient of social support, as the extent to which an individual believes that his or his needs for support, information and feedback are fulfilled.24 another way to understand social support is in terms of social networks by studying the various aspects associated with the support network; the social ties to other individuals, groups, and larger community.25,26 recent research and theoretical perspectives have broadened the use of the term to encompass abstract ideas of anticipation, perceptions, [page 52] [qualitative research in medicine & healthcare 2018; 2:6996] article no nco mm er cia l u se on ly quality of support, quantity of supportive interactions and other abstract characteristics of persons, behaviors, relationships, or social systems.25 the diversity of our understanding of social support can be categorized into: i) kinds: emotional vs instrumental; ii) sources: family vs friends and; iii) other facets, forms or expressions of support.27 this research project encompassed the diverse conceptualizations of social support without losing focus of the stated areas of inquiry. the data emphasized the definition of social support using the metaphor of family. using the metaphor of family, social support was investigated through the established social, organizational networks of the church community, which comprised of social gatherings, small groups and participation in nourishment of others, discipleship and hospitality. these social activities existed in the context of the church to provide social support to large congregations and cater to diverse emotional, psychological and social needs and wellbeing of those in the church community. i argue that the interview accounts reaffirmed how social support is the social exchange of various support resources between church members and leaders, and most importantly the outcome of these exchanges in the expressions of various psychosocial needs and fulfillment of those needs. the church is a family and this is what social support means in the church community. using this metaphor, three conclusions can be made. first, the social, organizational structure of the church most resembles a family where the parent assumes authority and decision-making over the larger whole, taking responsibility of the wellbeing of others. leadership in a family-type of organization ensures accountability and may suggest how power and decision-making can be negotiated to suit the needs of the whole. secondly, the social, organizational structure of a family describes how social support is distributed to members and overseen by church leaders – the processes and networks of social support within the community. this hierarchical structure in a church family enables various resources of social support to be disseminated over a large population, supported by policies that are intergenerational that ensure the survival of core values. lastly, the family unit is the center of life for an individual, a concept that represents a resource-center where individuals receive various types of psychosocial needs. in a church, individuals rely on each other for support such as advice, business-professional referrals, dating and friendships; and other emotional needs such as prayer, comforting and socializing. church life and social support is as diverse as the needs, culture and characteristics of a church community. wolves in sheep’s clothing and other unnoticeable research challenges there were challenges i encountered when conducting this study. first, the recruitment of participants was tedious, partly because of my recruitment strategy. initially i had planned to find participants on worship days and interview them right after the church service, this did not work. all the participants i found at church during worship were eager to return home and spend time with their families; i did not recognize this at the time. so, i reengineered my efforts by setting up appointments and interview calls during weekdays. the second challenge i encountered was interviewing church leaders. those who did not know me as well, one participant, was hesitant and skeptical about my study even though i was clear about the consent form and research goals. it is plausible that i may have appeared to be a threat from higher organizational power or someone who could undermine the status quo: however, i cannot validate these assumptions. what i do know now is the importance of developing relationships to release any tension or anxiety with participants. finally, my research goal changed in the process of conducting this research. initially i was interested in the church as a source of coping with and improving overall mental health as the review of literature suggested. all but one of my participants did not recognize mental health as a critical issue in the church, yet all participants alluded to various types of psychosocial benefits. it may be that the terminology is not widely used in the church community, yet the concept is identified in other terms. the participants were aware of individuals in the church going through mental health issues but couldn’t conclude or connect the church as a coping mechanism. therefore, my study cannot be used to corroborate literature on coping and religious involvement. this study can only broaden our understanding of social support in a religious community. this discussion provided a baseline for future inquiry. conclusions from this study, we get a sense of what social support means in one church. what we need to know is whether this is true for other churches, across denominations, and whether there are any generalizable claims about the christian faith. this study is a call to encourage other researchers to dig deep and wide into the field of spiritual communication. recently, the national communication association created a spiritual communication division and there is need for it to mature into a robust field connecting with other applied fields such as health communication. practically, the findings of this data were reflexive. many of the participants i talked to were curious about my findings to know the state of affairs in their church community. one of the participants suggested that the conclusions of this study should be used to create better ministries and provide trainings for church leaders. these are valuable and positive suggestions. approaching the issues raised in this study require an informed approach to help strengthen the existing social bonds and networks in the faith community. we are a family of believers is what defines the church. in this study, i referred to the core of family life to dis [qualitative research in medicine & healthcare 2018; 2:6996] [page 53] article no nco mm er cia l u se on ly cover a new frontier in the intersection of religious life and social support. i invite you, my academic community, to join me in this quest across the multicolored landscapes of religious communities. religious people are happier and healthier because they’ve got each other, but you’ve got to see it to believe it. references 1. koenig hg. research on religion, spirituality, and mental health: a review. can j psychiatry 2009;54:283-91. 2. salsman jm, pustejovsky je, jim hsl, et al. a meta-analytic approach to examining the correlation between religion/spirituality and mental health in cancer. cancer 2015;121:3769-78. 3. park cl. religion as a meaning-making framework in coping with life stress. j soc issues 2005;61:707-29. 4. holt cl, clark em, wang mq, et al. the religion-health connection among african americans: what is the role of social capital? j commun appl soc psychol 2015;25:1-18. 5. holt c, wang m, caplan l, et al. role of religious involvement and spirituality in functioning among african americans with cancer: testing a mediational model. j behav med 2011;34:437-48. 6. holt cl, wang mq, clark em, et al. religious involvement and physical and emotional functioning among african americans: the mediating role of religious support. psychol health 2013;28:267-83. 7. brown dr, gary le. religious involvement and health status among african-american males. j natl med assoc 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cambridge university press; 2010. 23. cobb s. social support as a moderator of life stress. psychosomatic med 1976;38:300-13. 24. procidano me, heller k. measures of perceived social support from friends and from family: three validation studies. am j commun psychol 1983;11:1-24. 25. hupcey je. clarifying the social support theory-research linkage. j adv nurs 1998;27:1231-41. 26. lin n, simeone rs, ensel wm, kuo w. social support, stressful life events, and illness: a model and an empirical test. j health soc behav 1979;20:108-19. 27. veiel ho, baumann u. the many meanings of social support. in: veiel ho, baumann u, eds. the meaning and measurement of social support. new york, ny: hemisphere; 1992. [page 54] [qualitative research in medicine & healthcare 2018; 2:6996] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2017; 1:6791] [page 93] introduction the amazing you (tay) is a permanent exhibition at the tampa museum of science and industry (mosi) that takes visitors through each stage of life, from conception to death. it contains 400 different health exhibits, each sponsored by florida medical practices, device manufacturers, health insurance companies and government agencies. these sponsors sometimes influenced the content of the exhibits. for example, an ophthalmology practice provided videos of eye surgery, and a prosthetics manufacturer provided artificial limbs and organs. at the beginning of life (bol) area of tay, the topic is women as carriers and caretakers of fetuses. these 7 exhibits, placed at the start of the exhibition have a strong prescriptive, even moralistic underpinning, because they insist on healthy choices made by mothers during gestation. i am interested in the ways that motherhood as a subject position1-4 is constituted by this multimedia health campaign. in the ethnographic descriptions included in this paper i argue that the exhibits encourage women visitors to identify themselves as candidates for a medicalized pregnancy, and visitor responses show how they interpret and resist these mandates. this project is at the intersection of health communication and science center studies. it is derived from a larger, doctoral study of how health instructions are communicated to science museum visitors. the year this study was conducted, 73 million people visited science museums,5 and health exhibits are a common feature of these museums, yet there is not much health communication scholarship about them. while science center studies appear in a major communication journal, public understanding of science,6-9 they are not specifically about health exhibits intended to change behaviors. the key argument of this paper is that health exhibits issue directives in addition to informing visitors, an argument presented through a case study of the pregnancy exhibits at tay. this research contributes to the literature by focusing on a kind of speech act, the directive, encompassing requests, suggestions and commands.10 directives can be contrasted with assertives (or informational, descriptive statements) because rather than just describing, they seek to affect change in the addressee. in order to hide the explicit exercise of medical authority, medical directives can be embedded within statements of fact. for example, the message quitting smoking now reduces serious risks to your health is a factual assertion, syntactically, but functions pragmatically as an indirect directive11 to quit smoking. characterizing messages as directives helps surface power differentials in medical discourse, bemandates of maternity at a science museum, from should to must david haldane lee nyc college of technology, new york, usa abstract a pregnancy exhibit at a science museum is an opportunity to research how medical advice is communicated and interpreted. this paper is about the beginning of life area of an exhibition called the amazing you at the tampa museum of science and industry, where exhibits are prescriptive as well as descriptive. expectant women are urged to deliver full-term, normal birthweight babies, by behaving according to prescribed medical norms. this study provides ethnographic descriptions of the exhibits, as well as insights from museum visitors who were interviewed. the exhibits, which emphasize fetal rights and maternal duties, are interpreted and critiqued by women visitors. as the exhibits climb towards greater realism (from euphemistic computer graphics to actual fetal specimens) visitors encounter assertions of fact that precede sometimes tacit directives to undergo a medicalized pregnancy. exhibits are viewed from the perspective of speech act theory, presenting a new approach to health communication research. i argue that this science center exhibit tells people what to do, in addition to passing on information. correspondence: david h. lee, nyc college of technology, department of humanities, 300 jay street, room a630, brooklyn, ny, 11201. tel.: +1.813.313.6888. e-mail: dlee@citytech.cuny.edu key words: maternal health, science museums, framing, positioning, speech acts. conflict of interest: the author declares no potential conflict of interest. received for publication: 13 may 2017. revision received: 28 july 2017. accepted for publication: 3 august 2017. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright d.h. lee, 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:93-102 doi:10.4081/qrmh.2017.6791 qualitative research in medicine & healthcare 2017; volume 1:93-102 no nco mm er cia l u se on ly cause the issuer of a directive presupposes their own authority and the obedience of the addressee. this is a power dynamic that is not addressed in most health communication research which privileges information-transfer. looking at analogous developments in health education and museum studies provides an entry-point for investigating understudied health exhibits such as tay, as well as the limitations of viewing communication exclusively as the transmission of facts. health education, science centers, and behavior change information-transfer approaches to health education are based on notions of passive individuals acquiring facts.12-14 the limited effectiveness of health campaigns based on information-transfer prompted more focus on changing behaviors in health promotion efforts, beginning in the 1980s.15 the shift from health education to health promotion14,16,17 can be characterized as a rejection of education for education’s sake. instead of simply describing anatomical processes, individuals are instructed to prevent disease by eating better, exercising, losing weight, reducing stress and quitting bad habits like smoking. given its preventative focus, health promotion messages have a wider audience beyond people with medical problems. they also address presymptomatic persons deemed at-risk because of lifestyle factors predicting disease. because health promotion is also multisectorial14 it reaches beyond medical settings and into workplaces, schools and other public spaces such as science museums. in ways analogous to health promotion, hoopergreenhill18 sees museums moving away from the information-transfer model and towards a conception of visitors as active participants. similarly, leinhardt and knutson19 reject the osmotic perspective of museum learning, where people learn simply by being in the presence of important objects. instead, they see museum learning as a participatory and interactive process.19 traditionally, the purpose of health exhibitions is to inform,20 but during our interviews, mosi executives rejected the strictly informative approach, describing tay as a kind of public health intervention. unlike human anatomy exhibitions presented according to a systems framework (i.e. skeletal, circulatory, etc.), tay confronts visitors with action steps at each life stage, urging behavior changes. the exhibition is unique because it straddles these shifts from health education to health promotion, and from passive to active museum audiences. materials and methods this qualitative, exploratory study uses ethnographic observation and description,21 ethnographic interviewing,22,23 and multimodal methods24 suggested for the interpretation of multimedia. upon irb approval in the summer of 2012, data collection began by making reference videos of each exhibit, shot from the visitor perspective. i met 3 mosi executives in the fall for unstructured interviews, and that winter i collected 72 one-page exit surveys from visitors. the survey posed open-ended, undirected questions, including what brought you to mosi today?, what do you think about tay? and anything you liked in particular? that elicited responses other than yes/no. the last field in the survey invited the visitor to be interviewed in exchange for tickets to mosi’s imax theater. 22 visitors were interviewed for about 15 to 40 minutes each. after obtaining informed consent i tried to ask undirected questions similar to those on the survey that allowed informants to steer the topic of conversation. i spoke to volunteers, solo visitors, groups of friends, couples and single or coupled parents. the convenience sample of mostly american visitors provided diverse responses in terms of age, groupings (dyad/triad), occupation, gender and ethnicity. interviews were transcribed using dragon naturally speaking voice recognition software. various descriptive terms and phrases appearing on the transcripts that my informants used to describe bol were color-coded. i wrote descriptions of each video, a transduction25 of televisual data into descriptive text, and these fieldnotes were then coded using the same descriptive language highlighted in the transcripts. the approach was inductive, in that i did not start out with a testable hypothesis or theoretical orientation. it was inspired by grounded theory26-29 in that a theoretical explanation emerged during the process of data collection and analysis, rather than having been decided on beforehand. classic concepts from pragmatics and sociolinguistics helped explain emerging themes. theories of frames and speech acts as noted, mosi executives stated that they set out to create a different kind of human body exhibition that they framed in interventionist terms. this helped me formulate research questions about museum exhibits that, in addition to passing on information, try to get the visitor to do something. i noticed that some exhibit titles contained commands, worded in the imperative mood (for example, “stay active”, “you be the doctor”, “live forever”, “do this, not that” and “use it or lose it”). exhibits presented factual information, but apparently as a warrant for a directive, and there were also directives performing double-duty as assertions of fact. codes from the transcripts and fieldnotes variously identified exhibits in sequences of descriptive and prescriptive messages. the museum communication systems literature helped identify audio, visual and tactile channels;30 components such as the exhibitor, exhibition and visitor31 and the joint meaning-making process of designers and visitors.32 but each of these models failed to address the content of messages as either descriptive or prescriptive. seeking substantive theories to explain this distinction, i began to consider exhibits as [page 94] [qualitative research in medicine & healthcare 2017; 1:6791] article no nco mm er cia l u se on ly made up of speech acts, which presupposes that they need not be vocal and verbal utterances. for example, hailing a cab is a non-verbal directive. the searle taxonomy of speech acts10 provides a distinction between descriptive (assertive) and prescriptive (directive) messages. his concept of indirect directives11 describes commands or suggestions phrased otherwise, as an assertion, for example. illocutionary force33 refers to the intended strength of a speech act, as indicated by the difference between should and must, for example. the notion of “act sequence”34 describes speech acts that are linked together, such as an assertion that precedes a command.35-38 i was especially interested in the ways that assertions of fact were building blocks of a directive, because they provided the evidential warrant.39 concepts of framing,40-43 broadly conceived, helped to characterize the selective presentations of facts, and what gets left out when complex health problems are depicted in multimedia. framing also describes the concealment of illocutionary point and the modification of the illocutionary force of messages. in the results section that follows, i present each exhibit from tay’s bol area, including quotes from informants and theoretical insights to illustrate themes that emerged. i want to draw the reader’s attention to how health issues are framed, and how directives are issued, sometimes tacitly. visitors encounter a mix of assertions and directives about the duties of pregnancy and the rights of the fetus, while representational strategies go from euphemism towards graphic realism. quotes show informants negotiating and resisting these rhetorical appeals, pointing out what is excluded when an exhibit frames an issue. results introducing the amazing you’s beginning of life area at the entrance to the tay exhibition on mosi’s third floor there is a life-size plaster statue of a naked pregnant woman, under spotlights, signaling the start of a human lifespan. her head bowed down, obscuring her face, she clutches her swollen abdomen with both hands, drawing attention to it. a text panel below reads: you begin here. during our journey through life we gradually begin to understand ourselves. in each life phase there are new wonders to behold and new discoveries to make. you are amazing. welcome to the amazing you! the second-person, gender-neutral pronoun, you creates a situation of address.44 at bol you are a pregnant mother learning about how to deliver a healthy baby. elsewhere in tay, you are an adolescent learning how to resist peer pressure. still later in the exhibition, you are an elderly person being told to complete crossword puzzles to postpone neurodegenerative diseases. mosi executives stated that the exhibition is not about the body as some abstract object. instead it is about you, and in addition to imparting information it will enlist the visitor into a lifetime of biomedical interventions. the epicene pronoun you is being used deictically to hail various visitor demographics. some museum exhibitions take place in an open space in no particular order. by contrast, tay is more rigidly sequential, because visitors are guided from one exhibit to the next by wall panels that form comb-like passages. entering the low-lit, noisy exhibition, visitors first encounter bol, which contains the following exhibits: “in my womb”, “welcome to our world”, “infant roulette”, “early arrival”, “pregnancy”, “biocontroversy” and “fetal remains”. in my womb sponsored by the morton plant hospital bay care health system, the “in my womb” video booth has a bench with seating for three. each of these short videos provides narration summarizing a period of gestation between conception and birth, stressing how formative it is to the rest of human development. computer animations represent the fertilization of an ovum, cell division, and organ development. lupton14 notes the use of euphemism in health promotion discourse. these colorful digital images are the first example of euphemism being employed at tay. morgan45 argues that digital representations of embryos indicate ambivalence towards actual fetal specimens. after each video, the screen shows an image of what appears to be a woman’s hand, with a fetus between her thumb and forefinger (figure 1), as if holding the fate of her offspring in her hands.this image suggests the precarity of the fetus and the gravity of a mother’s responsibility. welcometo our world the title of the next exhibit switches from a first-person singular pronoun (my) to a plural possessive (our). “welcome to our world: video footage of actual human births” first shows 3d animations of a cervix dilating, a [qualitative research in medicine & healthcare 2017; 1:6791] [page 95] article figure 1. feminine hand holding a fetus between thumb and forefinger (“in my womb” exhibit). no nco mm er cia l u se on ly uterus contracting, and an in-vitro fetus rotating in the womb. animations euphemistically show the birthing process, the crowning of the baby’s head, and the delivery of the placenta. the videos that follow show graphic documentary footage of solo birth, the birth of twins, and a cesarean. they appear to take place in a hospital, indicated by hospital gowns and gloves worn by obstetrical professionals. one of my informants, a mother pseudonymously named kay (who was visiting mosi with her husband and two children) disliked the exclusive portrayal of hospital birth in these videos: you walk in, and the first you see is the pregnancy and birth part…it assumes “i’m going to go to the hospital”. there aren’t any other alternatives considered. “i’m going to have an ob” and, really, that’s not the way it really is in the world. they assume that everyone has the money to go through this whole hospital birth experience, and some people just choose not to. you know, i had her [daughter] at home, and everything was fine, and she turned out to be 10 pounds 6 oz., so she was really a big baby! based on her own experience, kay notes that birth is being framed selectively in a medical setting. her objections to the biomedical hegemony of obstetrics are shown in the following quote, where kay describes the negative aspects of hospital childbirth: if you go to the hospital, the first thing they do is hook you up to medical monitors, and they draw blood to test you for herpes and strep, and even before they get the results they start pumping you full of antibiotics… as soon as you walk in the door you are automatically put on a time limit, so if the labor isn’t progressing according to their idea of the time limit they start with the medical interventions, which could be iv medication, intra-vaginally, or even caesarian. most women end up on those medications, and then they tell the woman she needs to have an epidural…before you know it, you walk in the door and you are involved in all these medical interventions in processes that will occur naturally. in this passage, kay objects to the contrivance of a time frame and she portrays hospital birth as involving procedures beyond the mother’s control, mandated even when medically unnecessary. kay notes that women who decide on hospital birth are subjected to medical interventions, such as antibiotics and pain meds. the documentary footage of hospital birth is notable because it initiates a ramping up of realism as the exhibits move from away from computer generated abstractions. the staging of birth in a hospital setting appears to kay as a tacit injunction to undergo a medicalized pregnancy. infant roulette at the next exhibit visitors spin a chrome steering wheel that shows post-natal injuries resulting from a mother’s diet, overweight/obesity, or use of tobacco, alcohol and drugs. for example, when the wheel stops on “drugs” there is a photograph of an underweight baby in an incubator. a stanza of text explains that the consumption of illegal drugs during pregnancy can “cause miscarriage, premature labor, placental abruption, fetal death, birth defects and even maternal death”. the text asserts that babies who are born addicted suffer “withdrawal symptoms, such as tremors, sleeplessness, muscle spasms, difficulties feeding, irritability, convulsions, diarrhea, fever, sleep abnormalties, and joint stiffness”. the unsparing listing of symptoms, combined with photorealistic visuals, are an example of an indirect directive.11 it follows from the assertions of negative consequences that women should not use drugs while pregnant, but the directive is not stated. the implication of the roulette wheel is “don’t gamble with your child’s safety”, reiterating the frame of maternal responsibility. paula, a health educator i interviewed (who was visiting mosi with her mom) noted that neonatal abstinence syndrome (nas) was not mentioned, especially in the case of women who already gave birth: …and that’s actually probably the target demographic that you have coming through here: women who have children and may be getting pregnant for a second time. maybe they’re on some sort of opiate from a surgical birth, or a follow-up complication, and now they’re pregnant and their baby will be born addicted. by drawing attention to what was omitted in “infant roulette”, paula suggests the possible health consequences when an exhibit leaves out important information. over 20k u.s. infants a year are born with nas, a fivefold increase since 2000,46 corresponding to a national opiate prescription crisis. paula also said that the representation of fetal alcohol syndrome (fas) at “infant roulette” was missing some details: …when you talk about the fas it is really now like a spectrum of disorders. it also doesn’t really say anything – doesn’t really specify that a glass of wine a day could be considered – [that] there’s no amount of alcohol that’s actually been proven safe. despite the playful frame provided by the roulette wheel, “infant roulette” is a serious informational exhibit describing the consequences of some risk behaviors. implicit, but going without saying, is an injunction to avoid harming your fetus, although paula implies that women need the right kind of information to carry out that injunction. early arrival around the corner is an incubator with a realistic model of a little baby inside (figure 2). preterm babies are defined as being born any time before they reach 37 weeks old, and text explains that one in nine (or half a million) children in the u.s. are born premature each year. they struggle with breathing, digestion, hearing and vision, and may face long term learning and behavioral difficulties. subheadings em[page 96] [qualitative research in medicine & healthcare 2017; 1:6791] article no nco mm er cia l u se on ly phasize the maternal role in preterm birth. “mother’s medical risk factors” lists conditions, including high blood pressure, diabetes, and being over or under weight. “mother’s lifestyle and environmental risk factors” lists smoking, alcohol use, and illegal drug use (abuse of legal drugs is not mentioned). other risk factors on the list suggest social determinants beyond a woman’s control, including the lack of a social support system, working long hours, and stress. another stanza of text, entitled “a growing problem?” notes that premature births increased 30% since 1983, but this may be partly an artifact of more stringent diagnostic criteria. the last line of text reads “statistics clearly show that early and good prenatal care reduces your chances of premature birth”. this sentence is a prototypical indirect directive, phrased in the indicative mood but suggesting an action to take. while social determinants are acknowledged, “early arrival” frames the responsibility for premature birth mostly in terms of the mother’s behaviors. paula, who works as a smoking cessation specialist with expectant mothers, told me that some women prefer to have a smaller baby. in certain populations, i mean, it’s desirable. smoking causes low birth weight babies, so they think of that as a bonus-like, ‘oh, the baby will weigh less. that’s better for me’. they don’t want to have to carry or have to push a heavier baby. she described her clients as not being forthcoming about their tobacco use: everybody thinks they’re different; everybody thinks they’re especially unique and their actions are not going to be the norm. the exception to the rule. nobody’s honest with me, especially when you meet women who are pregnant and smoking; if they tell you they’re smoking four cigarettes, they’re smoking twenty. rather than rushing to the defense of pregnant mothers, paula, above, portrays them as self-interested and duplicitous, as if agreeing with the victim-blaming frame of “early arrival”. while fact-checking the claims made in the exhibit, i found a who fact sheet that framed premature birth more broadly, listing as causal factors “multiple pregnancies, infections and chronic conditions…however, often no cause is identified”.47 other causal factors not mentioned in the either the exhibit or who fact sheet are environmental, such as air pollution,48,49 lead exposure,50 and household chemicals.51 by selectively framing its etiology, “early arrival” makes moms the primary culprits for premature birth, while structural factors such as poverty, environment, and access to prenatal care are downplayed. pregnancy harré2 describes positioning theory as the study of illocutionary force associated with shared assumptions about rights and duties. positions (similar to roles but more fluid) are defined by rules that carry varying degrees of urgency, from the merest suggestion to the compulsory. at bol, motherhood is a subject position with obligations, because women who conceive enter into a medically predefined course of action. a maternal deontology (meaning, duties and obligations) is emphasized where the mother is responsible for post-natal injury. while the eponymic you of tay has so far been addressed to the mother, the next exhibit tries to address a broader swath of subject positions by way of pronoun disagreement. the “pregnancy” exhibit shows a cross section diagram of an expectant woman’s torso, photos of swollen feet, and two taut, distended abdomens of women close to delivery. text describes symptoms of pregnancy, including hormone imbalance, pain, constipation, hemorrhoids, increased frequency of urination and skin pigmentation. the last stanza of text contains an array of addressees, which appear bolded below to highlight typographical errors which arguably have an unintended rhetorical effect. the changes of pregnancy can be uncomfortable. but if she is aware of the potential for pain and take appropriate steps to avoid it or relieve it when it occurs, you’ll go through the nine months in relative comfort. consulting with a health professional is the best way to find out what is best for the mother and baby. this stanza issues a directive to gravid women (and others in her interpersonal orbit) to avoid and relieve pain while consulting with health providers. notice the pronoun shifts from third-person singular (she) to secondperson personal (you’ll), to definite articles (mother and baby), addressing the variety of persons who will view the exhibit. by switching identifiers mid-sentence, the “pregnancy” exhibit may unintentionally be heralding other subject positions, such as the father, children, grandparents or others with a second-person relationship to the pregnant woman. the shifts in addressee invite others to consider pregnancy, helping prepare the visitor for the next exhibit, where they are asked to consider criminalizing neglectful mothers. [qualitative research in medicine & healthcare 2017; 1:6791] [page 97] article figure 2. realistic model of premie (“early arrival” exhibit). no nco mm er cia l u se on ly bio-controversy “bio-controversy” is a video booth located toward the end of bol, tackling controversial issues, including irresponsible mothers. pro and con arguments are made by actors in minute long videos. after each video, both actors ask, in unison, “what do you think?” letting visitors decide who won the debate. however, instead of balancing both sides of an issue, this exhibit contains hints to the viewer as to which is the preferred argument. medical authority, played by a grey-haired male actor in a white coat, usually makes a stronger case. in the video, drugs, smoking and drinking while pregnant, a question appears onscreen: “should a mother who smokes, drinks alcohol, or does illicit drugs while pregnant be liable for criminal charges?” background pictures show a pregnant woman holding a cigarette and a beer bottle, and a woman behind bars. the grey-haired actor who (according to scripts provided to me by mosi design staff) is portraying a “medical expert”, says calmly: the consumption of illicit drugs, alcohol and smoking puts chemicals into the pregnant mother’s blood stream, which cross the placenta and can affect the fetus. babies are more likely to be born prematurely, have complications, be drug addicted themselves, have mental retardation, have heart and face defects, and much more. some states have successfully prosecuted the mother for child abuse. the short argument above can be seen as a series of assertions preceding a directive to criminalize pregnant women, although it is never stated outright. in classical rhetoric, a practical syllogism has as its conclusion the performance of an action, following from a major and minor premise.52 accordingly, the medical expert’s practical syllogism might be restated as follows: abuse is illegal; this is abuse. the action step that follows is to support criminalization. the medical expert could plausibly deny he is endorsing criminalization, but is instead making mention of a possible policy response. with the action step unstated, but reasonably following from the premises, the audience is enlisted to come to the preferred conclusion. the next half of the video shows a young actress portraying a “female rights advocate” who provides a rebuttal: a woman has the right to do what she wants to her body. it is not a crime to be pregnant, and it is not a crime to be an addict. so why should it be a crime to be a pregnant drug/smoking/alcohol addict? making this a legal matter would make substance abuse mothers less likely to get pre-natal care, which puts the baby at far greater risk. she needs help, not punishment. the stanza uttered by the female rights advocate can be also seen as a sequence of speech acts, in this case not all assertions. the first two assert the rights of women and the legality of pregnancy and addiction. these are followed by a rhetorical question, and the last two sentences are directives, because they take a stand and issue a policy recommendation: help pregnant women rather than punishing them. neither interlocutor says that drugs and drinking during pregnancy is a good idea, but the female rights advocate asserts that criminalizing behaviors will result in women not getting needed medical help. viewers of the video are provided with some hints about which side of this controversy is preferable. for one, the woman carries the title of female rights advocate, suggesting that her position is political rather than dispassionately scientific. in fact, the move to criminalize expectant mothers has been characterized as ideologically motivated, and opposed by obstetricians and addiction specialists.53 another clue undermining the credibility of the female rights advocate is the equivalence fallacy “it is not a crime to be pregnant, and it is not a crime to be an addict. so why should it be a crime to be a pregnant drug/smoking/alcohol addict?” for analogy, consider “drinking is legal, driving is legal, so why should drinking and driving be illegal?” the visitor has been tacitly steered towards the medical expert’s indirect directive to criminalize, given the logical fallacy of his opponent. fetal remains exhibit outside the last exhibit there is a large photo of a fetus in vitro. towards the entrance, a plaque announces that visitors are about to see a collection of fetal specimens on loan from the human development branch of the national museum of health and medicine, a part of the armed forces institute of pathology of the walter reed army medical center. around a glass divider in a dimly lit area are 7 clear cylinders, illuminated by floodlights, each containing a fetus suspended in formalin. the collection includes a fetus at 6 weeks, 10 weeks, 11 weeks, 12 weeks, 13 weeks and the largest, a 27 weeks-old specimen. at the bottom of each cylinder there is a plaque explaining what is happening at each developmental stage. for example, “by 13 weeks the sex of the embryo can be identified.” representational technologies at bol have so far included computer graphics, documentary videos, plastic models and finally, the realism provided by human remains. as the climactic exhibit, this was the one that survey respondents and interview participants most wanted to talk about. they were concerned with the authenticity of the fetuses, where they came from, and the exhibit’s appropriateness for children. the plastic premie baby from “early arrival” was perhaps realistic enough for visitors to doubt the authenticity of these fetal specimens. coleen, visiting with her 8-year-old son (who was exploring the nearby exhibits as i spoke with his mom), was surprised: no way! i don’t think it actually registered just now that they were really…real ones! [laughs] you know? that might have flipped him out if he knew. but i didn’t mention it, he didn’t read it, i just kind of glossed over it. he said “oh yeah that’s neat!” i said “all right!” i think in his mind, he is thinking they were [page 98] [qualitative research in medicine & healthcare 2017; 1:6791] article no nco mm er cia l u se on ly models. it’s fine. doesn’t bother me. if he had a question about it, i would just explain. an educated young woman without kids who worked in marketing, elizabeth was concerned about the origins of the fetal specimens. i noted that the plaque said they were on loan from walter reed, but she replied, it just says that they are on loan, but they don’t say if they are real or not. like i know in the bodies exhibit… the bodies were real, and it was very controversial about where the bodies came from. so i assume it was also controversial here, and especially since there are issues about pro-life and pro-choice. and you have people on different sides, obviously, and they may be confused or curious, and then maybe having to explain to their kids. elizabeth is referring to the museum exhibition bodies, which was shown at mosi in 2005, featuring actual human remains, preserved by a process called plastination. the exhibitor, premier exhibitions, maintained that the corpses used in the exhibition were obtained legally in china, but details were scant, leading to a legal settlement with the nys attorney general in 2008.54 the comments of elizabeth, above, situate the fetal remains exhibit in social and political context, which is left out when fetuses are used to represent sui generis developmental stages. another woman named alexis, also wondered about their origins: i think that they should have something clearly written out that says these were babies that were unable to develop any further and they weren’t killed to provide this display. they aren’t like a real live person at all, so that people, especially children, can understand. “how did they get in the jar, mommy?” i assume that they were fetuses who were naturally aborted or miscarried and they were used for this purpose after their lives had ended. according to mosi staff, the walter reed medical center didn’t provide details about the provenance of the specimens, only that they may be over one hundred years old. the initiative to collect and preserve fetal material is associated with the embryologist franklin paine mall, director of the carnegie institution department of embryology, founded at john hopkins medical school in 1913,45 who solicited human embryos from doctors whose patients had miscarried. according to morgan45 the impulse to collect fetuses was in the interests of science, and can be viewed as defensible in historical context. the fetal remains may signify what layne55 argues is a taboo topic for american parents: the memory or mention of pregnancy loss. these relics of early 20th century scientific curiosity have been supplanted by neater, more palatable representation technologies such as computer graphics. discussion apart from some key studies56-58 the directive speech act has not been a primary focus of communication inquiry, let alone the subfield of health communication. a measure of successful public health interventions is the degree to which target audiences submit to and comply with prescribed regimens, and in order to comply they first need to be asked. while directives are abundant in public health messages that instruct and persuade, many health communication studies don’t clearly distinguish reporting and ordering. no doubt, receiving and understanding the right information improves outcomes, but in this paper, i have suggested how assertions of fact can be used to justify a directive that follows. researching the assertive-directive speech act sequence has the potential to enlarge the discussion about health messages, adding to a fuller understanding of what recipients are expected to do with the information they receive. bol doesn’t just pass on information; it is full of shoulds and musts, both overt and implicit, for expectant mothers. because choices made during pregnancy have such formative effects, mothers are framed as vessels for humanity, foregrounding their duties and the rights of the fetus.59 concepts of educational scaffolding60,61 describe how support systems that help introduce new ideas and procedures can gradually be removed as learners progress. arguably, bol eases visitors into difficult topics through a progressive movement towards greater realism and urgency. as such, the exhibits are climax-ordered,62 culminating in a macabre directive for expectant women to walk the straight and narrow and opt for a medicalized pregnancy. this analysis shows a ramping up of illocutionary force, as exhibits become increasingly realistic and focused on prenatal dangers. “in my womb” has computer animations focused on normal gestation, and “welcome to our world” begins with animations, then shows actual birth videos. “early arrival” presents a realistic 3d model of an underweight baby, and finally, actual aborted fetuses are shown. [qualitative research in medicine & healthcare 2017; 1:6791] [page 99] article figure 3. representational staircase going from should to must as the exhibits get more realistic. no nco mm er cia l u se on ly depictions climb a representational staircase (figure 3) from euphemism to realism. the staircase diagram correlates representational mode and illocutionary force. that is, as depictions become more explicit, auxiliary verbs of necessity (must) supplant suggestions (should), heightening urgency for the visitor. this is a hypothesis of bol as a multimodal argument using assertions to predicate moral mandates about maternal responsibilities, as evidenced by the exhibits and informant insights. paula noted what information was lost during a transduction of medical expertise into multimodal exhibits, and kay noted the preferential portrayal of hospital birth, both drawing attention to framing. coleen, elizabeth and alexis voiced a sense of shock about the fetal specimens and wondered about their authenticity and origins – their concerns phrased in vocabularies of “real” and “actual”. the quotes show them seeking “footing”63 as frames become more realistic and subject positions shift. positions are addressed throughout bol using pronouns or definite articles. unnamed, unparented, the fetuses efface subjecthood and establish in its place the grand third-person, singular-neuter pronoun, it. their manifest function is to represent developmental stages, but is their latent function a warning? can the fetal remains be viewed as an indirect directive? are women being told to place the selfhood of their child over their own, lest it be still born? an implicit object lesson about miscarriage, warning women about what can happen if they don’t behave? in posing these questions, i’m speculating less about the intentions of mosi and the exhibit designers, and more about a potential interpretation, although unarticulated by my informants in such terms. what makes the present study unique is the consideration of speech acts other than assertions, which helps surface assumptions about behavior change. the results show how the illocutionary force of a directive can be ambiguated by stating it indirectly, in the form of an assertion. health communication studies note the problem of reactance to controlling language64-66 which helps explain motives behind the strategic attenuation of illocutionary force. questions for further research are related to the attenuation and amplification of risk,67-69 except approached from the perspective of speech acts. namely, how can representational means (from euphemism to realism) alter the illocutionary force of multimodal messages? does explicit realism necessarily correspond with stronger, more forceful health directives? while modalities in language express possibility and necessity to varying degrees, can a defensible analogy be made with multimodal health messages? limitations although presented under traditional subheadings, the reader will note discussion and analysis throughout, intended to show how existing theory was consulted in concert with data analysis. this essay is not typical of visitor studies that measure learning outcomes. informants were not asked directed questions, so they spoke only about exhibits that interested or concerned them. notice men didn’t comment. a follow-up study will employ a more directed survey instrument to investigate the hypothesis that modes of representation correspond to perceived illocutionary force. there is also a reflexive dimension, unexplored here, regarding how my own subject position (male, childless, middle-aged, white, etc.) influenced the research process. despite these limitations, i believe a fresh approach to the under-researched topic of medical directives at science museums is presented here. showing how multimodal messages link together reports and commands helps foreground what the messenger wants the recipient to do with the information they get, clarifying the intent of public health interventions. this offers health communication and museum practitioners an opportunity for clearer communication and more explicit agendas. conclusions this study presents four different findings about bol that can be itemized as follows: i) the selective framing of pregnancy, emphasizing women’s individual behaviors over structural determinants. ii) techniques of subjectifying women as candidates for a medicalized pregnancy, such as euphemism, pronouns, logical flaws and indirect directives. iii) foregrounding the rights and personhood of the fetus, provoking questions about the authenticity and origins of the fetal remains. iv) a ramping up of realism corresponding with increased urgency or illocutionary force. bol hails women into a deontology of medicalized pregnancy, contrasting normal pregnancy with pathological scenarios of premature birth and miscarriage, which serve as warnings. the dominant frame of bol is that women are responsible for post-natal harm resulting from their behaviors, while the structural determinants of health are underexplored. while empowerment is unobjectionable, there is a risk of victim-blaming when the mother’s agency is overstated. women’s responses show strategies for interpreting and resisting biomedical onuses. this paper views science center exhibits as speech acts in sequence, with the directive sometimes unstated, but following assertions as a matter of course. the implication for further research is that speech acts need to be considered multi-modally (not only in their paradigmatic verbal form), and in sequence instead of as stand-alone units of analysis. this approach can help further health communication beyond a narrow focus on information transmission. references 1. davies b, harré r. positioning: the discursive production of selves. j theory soc behav 1990;20:20. 2. harré r. positioning theory. self-care dependent-care nursing 2008;16:28-32. 3. kerr a, cunningham-burley s, tutton r. shifting subject [page 100] [qualitative research in medicine & healthcare 2017; 1:6791] article no nco mm er cia l u se on ly positions: experts and lay people in public dialogue. soc stud sci 2007;37:385-411. 4. braun k, schultz s. “… a certain amount of engineering involved”: constructing the public in participatory governance arrangements. public underst sci 2010;19:403-19. 5. atsc. 2011 science center and museum statistics. 2014: available from: http://www.astc.org/wp-content/uploads/ 2014/10/2011-science-center-statistics.pdf. 6. macdonald s, silverstone r. science on display: the representation of scientific controversy in museum exhibitions. public underst sci 1992;1:68-87. 7. henriksen ekf, frøyland, m. the contribution of museums to scientific literacy: views from audience and museum professionals. public underst sci 2000;9:393-415. 8. bud r. science, meaning and myth in the museum. public underst sci 1995;4:1-16. 9. yaneva ar, rabesandratana tm, greiner b. staging scientific controversies: a gallery test on science museums’ interactivity. public underst sci 2009;18:79-90. 10. searle jr. a classification of illocutionary acts. lang soc 1976;5:1-23. 11. searle jr. indirect speech acts. in: cole p, morgan jl, eds. syntax and semantics, vol. 3: speech acts. new york: academic press; 1975. pp 59-82. 12. beattie a. knowledge and control in health promotion: a test case for social policy and social theory. in: gabe j, calnan m, bury m, eds. the sociology of the health service. london: routledge; 1991. pp 162-202. 13. weare k. the contribution of education to health promotion. in: bunton r, macdonald g, eds. health promotion: disciplines, diversity and developments. 2nd ed. new york: routledge; 1992. pp 102-25. 14. lupton d. the imperative of health: public health and the regulated body. thousand oaks: sage; 1995. 15. nutbeam d. health literacy as a public health goal: a challenge for contemporary health education and communication strategies into the 21st century. health promot int 2000;15:259-67. 16. tulchinsky th, varavikova e, bickford jd. the new public health. 3rd ed. cambridge: academic press; 2014. 17. petersen ar, lupton d. the new public health: health and self in the age of risk. st. leonards, nsw, australia: allen & unwin; 1996. 18. hooper-greenhill e. the educational role of the museum. 2nd ed. new york: routledge; 1999. 19. leinhardt g, knutson k. listening in on museum conversations. walnut creek: altamira press; 2004. 20. danilov vj. science and technology centers. cambridge: mit press; 1982. 21. agar m. the professional stranger: an informal introduction to ethnography. new york: academic press; 1980. 22. spradley jp. the ethnographic interview. new york: holt, rinehart and winston; 1979. 23. atkinson p. handbook of ethnography. london: sage; 2001. 24. bezemer j, jewitt c. multimodal analysis: key issues (preprint version). in: litosseliti l, ed. research methods in linguistics. london: continuum; 2010. pp 180-97. 25. kress g. multimodality: a social semiotic approach to contemporary communication. abringdon, uk: routledge; 2010. 26. glaser bg, strauss al. the discovery of grounded theory: strategies for qualitative research. chicago: aldine publishing company; 1967. 27. charmaz k. constructing grounded theory. thousand oaks: sage; 2006. 28. corbin jm, strauss al. basics of qualitative research: techniques and procedures for developing grounded theory. 3rd ed. los angeles: sage; 2008. 29. lindlof tr, taylor bc. qualitative communication research methods. 3rd ed. thousand oaks: sage; 2011. 30. de borhegyi s. visual communication in the science museum. curator 1963;6:45-57. 31. cameron d. a viewpoint: the museum as a communications system and implications for museum education. curator 1968;11:33-40. 32. hooper-greenhill e. a new communication model for museums. curator 1991;6:45-57. 33. searle jr. speech acts: an essay in the philosophy of language. london: cambridge university press; 1969. 34. hymes dh. foundations in sociolinguistics: an ethnographic approach. philadelphia: university of pennsylvania press; 1974. 35. frentz ts, farrell tb. language-action: a paradigm for communication. q j speech 1976; 62:333-49. 36. van dijk ta. pragmatic connectives. j prag 1979;3:447-56. 37. wunderlich d. methodological remarks on speech act theory. in: searle jr, kiefer f, bierwisch m, eds. speech act theory and pragmatics. amsterdam: springer; 1980. pp 291-312. 38. cooren f. the contribution of speech act theory to the analysis of conversation. in: fitch kl, sanders re, eds. the handbook of language and social interaction. new york: psychology press; 2005. pp 21-40. 39. toulmin s. the uses of argument. cambridge: cambridge university press; 1958. 40. goffman e. frame analysis: an essay on the organization of experience. cambridge, ma: harvard university press; 1974. 41. tannen d. framing in discourse. new york: oxford university press; 1993. 42. hom ag, plaza rm, palmén r. the framing of risk and implications for policy and governance: the case of emf. public underst sci 2011; 20:319-33. 43. steier f, jorgenson j. ethics and aesthetics of observing frames. cybern human knowing 2003;10,124-36. 44. benveniste e. problems in general linguistics. coral gables: university of miami press; 1971. 45. morgan lm. the rise and demise of a collection of human fetuses at mount holyoke college. perspect biol med 2006;49:435-51. 46. nida. dramatic increases in maternal opioid use and neonatal abstinence syndrome. bethesda: national institute of health, national institute on drug abuse; 2015; available from: https://www.drugabuse.gov/related-topics/trends-statistics/infographics/dramatic-increases-in-maternal-opioiduse-neonatal-abstinence-syndrome. 47. who. preterm birth fact sheet: world health organization. regional office for europe. geneva 2013. available from: http://www.who.int/mediacentre/factsheets/fs363/en/ index.html. 48. stieb dm, chen l, eshoul m, et al. ambient air pollution, birth weight and preterm birth: a systematic review and meta-analysis. environ res 2012;117:100-11. 49. darrow la, klein m, flanders wd, et al. ambient air pollution and preterm birth: a time-series analysis. epidemiology 2009;20:689-98. 50. torres-sanchez le, berkowitz g, lopez-carrillo l, et al. [qualitative research in medicine & healthcare 2017; 1:6791] [page 101] article no nco mm er cia l u se on ly intrauterine lead exposure and preterm birth. environ res 1999;81:297-301. 51. fei c, mclaughlin jk, tarone re, et al. fetal growth indicators and perfluorinated chemicals: a study in the danish national birth cohort. am j epidemiol 2008;168: 66-72. 52. gottlieb p. the practical syllogism. in: kraut r, ed. the blackwell guide to aristotle’s nicomachean ethics. oxford, uk: blackwell publishing ltd; 2006. 53. eckholm e. specialists join call for veto of drug bill. new york times. 04/15/14. 54. wilson m. ‘bodies’ exhibitors admit corpse origins are murky. new york times. 05/30/2008. 55. layne ll. motherhood lost: a feminist account of pregnancy loss in america. new york: routledge; 2003. 56. ehninger d. towards a taxonomy of prescriptive discourse. in: white ee, ed. rhetoric in transition: studies in the nature and uses of rhetoric. university park, pa: pennsylvania state university press; 1980. pp 89-100. 57. fitch kl. a cross cultural study of directive sequences and some implications for compliance gaining research. comm 1994;61:185-209. 58. labov w, fanshel d. therapeutic discourse: psychotherapy as conversation. new york, ny: academic press; 1977. 59. oaks l. smoking and pregnancy: the politics of fetal protection. new brunswick: rutgers university press; 2001. 60. pea r. the social and technological dimensions of scaffolding and related theoretical concepts for learning, education, and human activity. j learn sci 2004;13:423-51. 61. puntambekar s, hübscher r. tools for scaffolding students in a complex learning environment: what have we gained and what have we missed? educ psychol 2005;40:1-12. 62. hovland ci. the order of presentation in persuasion. new haven, ct: yale university press; 1957. 63. goffman e. footing. forms of talk. philadelphia: university of pennsylvania press; 1981. pp 124-59. 64. shen l. antecedents to psychological reactance: the impact of threat, message frame, and choice. health commun 2014;30:975-85. 65. richards as, banas ja, magid y. more on inoculating against reactance to persuasive health messages: the paradox of threat. health commun 2016:1-13. 66. xu j. the impact of locus of control and controlling language on psychological reactance and ad effectiveness in health communication. health commun 2016:1-9. 67. kasperson re, kasperson jx. the social amplification and attenuation of risk. ann am acad pol soc sci 1996;545:95-105. 68. schütz h, wiedemann pm. framing effects on risk perception of nanotechnology. public underst sci 2008;17:369-79. 69. goodman jr, goodman bp. beneficial or biohazard? how the media frame biosolids. public underst sci 2006;15:359-75. [page 102] [qualitative research in medicine & healthcare 2017; 1:6791] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2018; 2:7376] [page 121] introduction in january 2012, the academy of nutrition and dietetics – the leading professional association for registered dietitians (rds) – did something it had never done before in its 95-year history: it changed its name. once the american dietetic association, its new name, the academy of nutrition and dietetics, was chosen to better communicate its mission while promoting the strong science background and academic expertise of [its] members.1 a year later, the academy announced that dietitians could now choose their preferred title, registered dietitian or registered dietitian nutritionist (rdns). both the rd and the rdn titles require the same education requirements, certification processes, scope of work, and regulation. the academy reinforced the importance of choosing a title in their 2014 media guide, saying, all registered dietitians are nutritionists, but not all nutritionists are registered dietitians. this is a distinction that can matter a great deal to people’s health.1 rds and rdns are empowered to select the title that best fits their work and perceived audience’s preferences. these title changes are more than simple changes in semantics. they hint at deeper tensions and ongoing conflicts regarding who gets to be the gatekeeper of nutritional knowledge – registered dietitians or nutritionists. the academy’s name change and adoption of the rdn title suggest that, despite being a regulated profession, the academy is actively and purposefully engaging in professionalization, which includes the discursive processes that workers, as individuals and collectives, use to attain and maintain professional legitimacy for their occupation or profession.2 positioning rds as the nutritional experts in the united states gives rds the exclusive right to provide nutritional advice and services. it limits the rights of nutritionists and other health care professionals. this study examines the professionalization practices used by rds and their professional association. specifically, we examine how rds strategically frame and organize their identities to establish themselves as the nutritional professionals. we also seek to understand rds’ perceptions of how their professionalization discourses affect their profession and other professions. we argue that the academy and its members established a discursive turf war between rds and nutritionists as a way to waging a professional turf war: an examination of professionalization as a strategic communication practice used by registered dietitians sarah n. heiss,1 kristin k. smith,2 heather j. carmack3 1department of community development and applied economics, university of vermont; 2department of earth sciences, montana state university; 3department of communication studies, university of alabama, usa abstract in 2012, the american dietetic association changed its name to the academy of nutrition and dietetics. the following year, the association allowed their members to select between two titles: registered dietitian (rd) or registered dietitian nutritionist. based on interviews with dietitians, we argue that these semantic changes added fuel to a pre-existing discursive struggle for professional legitimacy. as of june 2017, there were over 100,000 registered dietetic practitioners, globally. approximately 74% of rds are members of the academy, a notably high percent of representation, suggesting the influence of this professional organization on the occupation. academy members work in a variety of occupational settings and fields, including hospitals, nonprofit organizations, and the food industry, and as such make significant contributions to patient health and public health outcomes. the academy and its members have established a discursive turf war to strategically establish and defend boundaries within the field of nutrition and dietetics. their discursive turf war has implications on the day-to-day work life of registered dietitians and other nutritional professionals as well as perceptions of professionalism made by audiences outside the field. correspondence: sarah n. heiss, department of community development and applied economics, university of vermont, usa. e-mail: sarah.heiss@uvm.edu key words: professionalization; professional boundaries; health communication; organizational communication. funding: grants from vermont agricultural experimentation station competitive hatch, during the conduct of the study. received for publication: 23 february 2018. revision received: 20 august 2018. accepted for publication: 26 august 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright s.n. heiss et al., 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:121-131 doi:10.4081/qrmh.2018.7376 qualitative research in medicine & healthcare 2018; volume 2:121-131 no nco mm er cia l u se on ly increase their profession’s legitimacy and economic security. our analysis of the rd’s turf war examines the boundary dynamics within nutritional healthcare provision and has valuable implications for rds and nutritionists alike. nutritional healthcare providers dietetics grew out of the field of home economics, a history that has enabled and constrained the profession’s identity and legitimacy in healthcare contexts.3,4 while dietitians first organized themselves as part of the american home economics association (ahea), they broke off from this group and formed the american dietetic association (ada) in 1917.5 the ada was exclusively for individuals who were officially trained and educated in home economics and/or dietetics.5 the ada attempted to leverage the exclusivity of its membership to create legitimacy in health care contexts, which dismissed or diminished the value of nutritional health care: “the true dietitian when properly trained and experienced is a specialist and deserves that recognition in the hospital.”3 to bolster the legitimacy of rds further, the academy pointedly used positivist and scientific language to frame its purpose and goals. in 1955 the president of the academy explained its mission was “to improve the nutrition of human beings, to advance the science of dietetics and nutrition, and to advance education in these allied areas.”3 the academy’s continual emphasis on science, research, and expertise aligned it with academia and elevated the profession. the profession also set minimum requirements to be a member to help differentiate dietitians’ medical and scientific expertise. as of june 2017, there were over 100,000 registered dietetic practitioners, globally.1 approximately 74% of rds are members of the academy,6 a notably high percent for professional associations. academy members work in a variety of occupational settings and fields, including hospitals, nonprofit organizations, and the food industry, and as such make significant contributions to patient health and public health outcomes.1 while the profession remains quite diverse, its practitioners are unified through their rd credential and, for many, their academy of nutrition and dietetics membership. to become registered, dietitians must complete a bachelor’s degree from a certified program, finish a six to twelve month internship, and pass a national certification exam. once registered, dietitians are required to pay an annual registration maintenance fee, to complete 75 continuing education credits every five years, and to submit a professional development portfolio to remain certified.1,3 in addition, many states require dietitians to obtain a stateissued license – with its own structure and rules – in order to practice in that location. the national and statewide certification processes are important legitimacy symbols that set dietitians apart from other food and nutrition professionals. recently, the academy made several title changes to address a professional tension within nutritional professions. first, the association changed its name, and second, it now offers two credential designation options: rd or rdn. the academy explained that the inclusion of the word nutritionist in the [rdn] credential communicates a broader concept of wellness (including prevention of health conditions beyond medical nutrition therapy) as well as treatment of conditions1 designed to increase the general public’s and non-experts’ awareness of the field of dietetics. incorporating the word nutrition into the association’s legal name increased its online media impressions from 20 billion prior to the name change to 30 billion.1 the academy argued the name change helped to optimize its presence among the public and non-experts who were searching for nutrition information. while incorporating the term nutrition(ist) was designed to increase the scope of work and awareness of the dietetics profession by drawing on the term’s familiarity, the new labels also served to help distinguish the knowledge and services of dietitians from those provided by nutritionists. the label nutritionist is used to identify someone who provides nutritional advice; however, formal requirements governing the provision of nutritional advice vary from state to state, with a wide range of rules, educational requirements, and certification types.1 furthermore, there are also special requirements for those performing nutritional work related to specific agencies, such as health care providers and government reimbursement programs. in the united states, a nutritionist may be someone who obtained a certification or degree in nutrition and works in research, health, or educational contexts. however, in some states, it is also legal for a person who provides nutritional advice with little to no formal education in nutrition, such as a health food or supplement salesperson, to use the nutritionist label. rds are nutritionists because they are nutritional experts; however, not all nutritionist can claim the rd title. to claim the rd title in the united states, one must meet the specific academic and professional requirements of the academy’s credential process (the data collected for this manuscript was collected after the academy changed its name but before it changed the credential options – rd or rdn – for individual members. as such, we decided to refer to individual registered dietitians as rds – the only label option academy members had at the time of data collection. we use the label rdn in the manuscript to highlight current and future symbolic conditions). the new label helps to address overlapping scopes of practice to enable efficient and effective client-centered services. the recent name and credential changes demonstrate a new chapter in rds’ ongoing struggle with professionalization. a study of canadian dietitians found that many rds reported being felt disappointed that they never obtained the level of professionalism promised to them during their educational training.7 the academy has [page 122] [qualitative research in medicine & healthcare 2018; 2:7376] article no nco mm er cia l u se on ly acknowledged similar struggles. in the organization’s 70th anniversary book published in 1990, the editor noted that another long-standing problem was the profession’s seeming lack of self-confidence.4 the current study seeks to examine contemporary attempts by rds and their professional organization to strategically frame their identities as professionals as well as distinguish their profession’s scope of practice from other related occupations. communicating professionalization professions claim expertise in specialized areas of knowledge and skills. in return, the public and other nonexpert professionals frequently look to them for expert advice or services. attaining professional legitimacy is important because it allows the profession to develop, maintain, and affect organizational and work life, as well as the development and diffusion of expert knowledge. while professions are important, professional legitimacy of any job is not given or pre-determined. an occupation does not have a predefined set of properties or features needed to obtain recognition as a profession.2 rather, professional status reflects a precarious set of ongoing, co-constructed definitions and public performances of competence, scope of work, and occupational identity. professionalization discourses are fundamentally rhetorical process[es].2 professionalization discourses represent workers’ attempts to make sense of who they are and what they do in relation to their jobs.8 workers, as individuals and collectives, have active roles in staking a claim to their sphere of competence, defining their scope of work, and setting expectations regarding intraand inter-professional interactions.2 however, the agency of a given profession to set its boundaries is bound by the larger social structures in which it exists. professionalization discourses are dynamic social negotiations that shape and are shaped by culture, norms, politics, institutions, and history within and outside of a given profession. professionals, as individuals and collectives, are simultaneously a product of and contributor to their historical moment. this approach helps contextualize professions as existing in a larger complex social system of interconnected occupations that strategically exclude and include groups of workers. professionalization boundaries and strategies torstendahl shifted scholarly theorizing about professionalization discourses by adopting a strategic approach.9 this approach accounts for the dynamic nature of professions and situates workers, as individuals and collectives, as having active roles and purposeful goals in professionalization. adopting a strategic approach, esser and tenscher described professionalization discourses as an on-going strategic attempts to present an occupation as the only competent and responsible group to tackle a specific problem.10 professionalization discourses can be understood as a set of strategic boundary setting practices.11,12 professional associations and individual workers distinguish their expertise, skills, and services from those of other occupations. by doing so, professionalization establishes arbitrary professional boundaries that include certain individuals and exclude others. while professions may be able to reach mutually agreed upon boundaries, boundary setting has also been described using combative terms. professional boundary work has been described using a battlefield metaphor,11 wherein different kinds of experts and even non-experts fight for the right to determine who has professional legitimacy and, therefore, occupational jurisdiction or turf. discursive battles for turf and professional legitimacy determine which occupation’s advice and services are accepted as permissible, autonomous, or valuable to social policy, organizational practices, and members of the general public.13 by gaining monopoly over a certain area of expertise, occupations achieve market control, respectability and social status in the community.14 nanacarrow and borthwick argued that the dynamic role of boundaries have the potential to challenge the monopoly of all the healthcare professions.15 indeed, professional boundary setting discourses have been identified as occurring in many healthcare contexts, including but not limited to disputes between traditional, complementary, and alternative medicine16 and nursing and midwifery.17 in addition to inter-professional boundaries, professionalization discourses can also establish intra-professional boundaries.15 by creating co-cultures, specified scopes of practice, and new formal associations, professions can strategically segment parts of a profession from the whole. in addition to differentiating scope of practice, intra-professional boundary setting often establish hierarchy among segments. professionalization within the healthcare context includes a variety of discursive and institutionalized practices. first, specialized expertise, often scientific in nature, is often cited as differentiating between in-group and outgroup healthcare providers.17 second, occupations tend to emphasize holism and patient centeredness to establish that they are able to treat the whole patient within very specific circumstances.18 third, occupations stress their ability to simultaneously provide emotional reassurance to patients and medical care.18 fourth, occupations promote their ability to prevent problems, while others treat the symptoms. fifth, occupations commonly adopt professional licensure and credential programs to set firm boundaries regarding their professional turf and assert their professional accountability.2,18 professional outcomes of boundary setting establishing and maintaining a discursive turf war over professional boundaries has important implications for those included, those excluded, and patients. first, [qualitative research in medicine & healthcare 2018; 2:7376] [page 123] article no nco mm er cia l u se on ly healthcare systems around the world are adopting interprofessional collaborative care models.19 continually evolving external and internal professional boundaries supports a clearer division of labor and reduces the potential for conflict when workspaces of different occupational groups overlap.10 second, professional boundaries maintained with regulations, licenses, or certificates provide a level of professional accountability.18 by expecting certain levels of professional competency, these practices protect the public from incompetent practitioners.20 professional endorsements also help healthcare consumers and potential employers easily identify credible professionals. in addition to helping providers and consumers find qualified advice and services, professional boundaries serve to protect healthcare providers from litigation. for example, regulations, licenses, and certificates in the field of nursing standardized nursing care, protecting the general public by reducing medical mistakes and protecting nurses from litigation due to medical mistakes. on the other hand, the national center for complementary and integrative health argued, regulations, licenses, or certificates do not guarantee safe, effective treatment from any provider – conventional or complementary.21 third, by establishing clear professional boundaries occupations are able to self-regulate work.12 at the macroorganizational level, self-regulation represents the autonomy of an occupation to dictate guidelines for training, development, and practice. autonomy is also represented in micro-organizational practices, where many professionals now work on inter-professional allied health teams. professionalization claims jurisdiction over specialty services and provides autonomy from other medical professionals, which increases the likelihood of being able to bill for care.13 sela-sheffy and shlesinger argued that examining professional boundary work is particularly useful for studying a range of different processes in the construction of professions.14 while boundary work has been identified in some research as a key outcome of professionalization processes, researchers have yet to talk to actual workers about their motivations and strategies related to professionalization and boundary management. in this study, we understand rds as a professional social group, united by the academy, which has and continues to engage in professionalization processes to attain and maintain their professional legitimacy as the nutritional care providers among food and nutritional experts, as well as health care professionals within a larger healthcare contexts. the current project adopts a communicative-based approach to understanding how workers’ in the field of dietetics understand and strategically frame their individuals and collective identities as professionals to achieve professionalization. we also discuss the possible implications of these professionalization discourses on their occupation and related-occupations. specially, we ask, rq1: how do rds discursively frame and organize their identities to establish their profession legitimacy? rq2: how do rds’ discursive choices serve to affect their profession and related-occupations while also seeking the right to provide nutritional care? materials and methods this study was supported with funds from a competitive agricultural experimentation station hatch grant. the grant funded project originally focused on partnerships between the academy and the food industry. data collection began after the researchers received university institutional review board approval. participants and data collection seventeen participants were recruited through an initial group of key academy member informants and snowballing techniques. to participate, interviewees had to be rds or rdns who were past and/or current members of the academy. the first and second authors recruited participants through email from three stratified sample populations: authors of recently published articles in nutrition and food science journals, authors of popular nutrition blogs, and faculty from university nutrition and dietetic programs. to increase the diversity of our sample, we used snowball sampling, in which interviewees recommend other potential interviewees. interviewees represented a diverse subset of academy members. the age of interviewees ranged from 20 years old to 66 years old (m=39). the number of years spent as an academy member varied from less than one year to over 38 years (m=13). fourteen of the interviewees identified as female (82.3%) and three interviewees identified as male (17.6%). approximately 88% of interviewees identified as caucasian (n=15), with one interviewee identifying as hispanic and one interviewee identifying as asian. professionally, the interviewees ranged from having less than one year of experience to more than 30 years as a rd. interviewees worked in a variety of settings, including hospitals, universities, public health settings, and the corporate food industry. three interviewees identified as current students, and one interviewee identified as a doctoral student. the participants hailed from 13 states and the district of columbia. interviews the first and second authors conducted face-to-face, semi-structured interviews during the 2012 food and nutrition conference and expo (fnce). interviews took place in quiet, private locations near the fnce venue. interviews took place over four days. the first and second authors completed follow-up phone interviews after the event with rds who could not attend an interview during fnce or to obtain follow-up information. interviews lasted approximately 45-60 minutes. [page 124] [qualitative research in medicine & healthcare 2018; 2:7376] article no nco mm er cia l u se on ly the first and second authors developed an interview protocol and research plan prior to attending fnce. based on the nature of the grant, questions focused on rd’s experiences and attitudes related to organizational partnerships between the academy and the food industry. questions included broad questions related to the rd occupation and the academy, including the average rd workday, the perceived importance of the academy to rds, and academy-industry partnerships and their impacts on public perceptions of rds. semi-structured interviews follow a preconceived interview script, but also give the interviewer freedom to digress to explore emergent themes.22 at the end of each interview and the end of each day, the first and second authors reflected together on the content of the interviews. the original interview protocol focused on rd’s perceptions of academy partnerships with industry. after several interviews, we noticed a reoccurring defensiveness from participants. interviewees constantly redirected the discussions by highlighting their individual and collective expertise and by telling stories that emphasized their individual and group professionalism and the differences between dietitians and nutritionists. after identifying these patterns within the first five interviews, we added questions about professions and professionalization to the original interview protocol. the new questions included, what does it mean to be a professional in the field of nutrition and dietetics? what is a dietitian? what is a nutritionist? how does the academy help you attain or maintain professional status? data analysis we used constant comparative methods to inductively identify themes in the data. constant comparative analysis is a cyclical and continuous method of processing, reducing, and explaining.22 researchers continually identify codes and themes within and across interviews as well as in comparison to the extant literature. analysis starts during the data collection process and calls for the continual refinement of themes as data is collected and then formally analyzed, through constant comparisons and recoding of the data set.23-25 during data collection, issues related to profession were consistently mentioned across all interviews. as themes emerged during data collection, the first and second author compared themes with other interview cases and previous research to understand how they confirmed, expanded and/or diverged from previous scholarship. the themes were so forceful and reoccurring, that we stopped interviewing when we reached saturation on this theme of professions, rather than the original aims of the project. interviews were transcribed verbatim, resulting in 292 single-spaced pages. in our initial analysis, the first and second authors read and coded the transcripts multiple times independently until forceful and recurring themes began to emerge from the data. the first and second authors discussed their codes and collapsed related codes into each other while dividing other codes to offer more detail as patterns began to emerge. the authors then reread and re-coded the data independently before meeting to discuss the data again. this iterative process continued until no new codes or themes emerged. we used forceful and representative quotes from the interviewes to represent the interviews’ unique voices and to support our claims as researchers. the third author joined the project after the analysis process was complete to help with writing and revising the written manuscript for publication. results based on our analysis of the interview transcripts, rds – as individuals and a collective united by the academy – are actively engaged in on-going professionalization struggles. specifically, rds are employing a discursive turf war as a professionalization tactic to claim jurisdiction over the provision of nutritional counseling and care. this turf war establishes boundaries of expertise between dieticians and nutritionists to establish legitimacy within an already tenuous healthcare landscape for nutritional experts. we argue that this turf war is fueled by unmet professional expectations. after establishing the discursive exigency for a turf war, we highlight the discursive practices that comprise this professional turf war. we discuss the possible implications of these professionalization processes on dietetics and related-occupations. setting the grounds for a turf war during discussions of the academy, rds continually justified their profession and their training. they emphasized how hard they worked, how long they spent in school, and how they were diligently trained in objective, scientific research methods. despite having bachelor’s degrees or more advanced professional degrees, members often voiced complaints of being underpaid. one rd argued, there should be more recognition in terms of pay and things like that for people who have spent some time…and effort into becoming an expert that they might not be recognized for right now in terms of pay or position. their comments underscored frustrations with the misunderstandings related to how people view their field. moreover, the dietitians used these arguments as ways to prove their value – and their status as professionals. one member described the process of becoming an rd as really difficult. much more difficult than people realize. salary is associated with legitimacy and status, and the lack of it was a catalyst for rds’ frustrations. one rd explained, dietitians are not super well paid, especially for half our workforce having a master’s degree or higher education level. she went on to compare dietetics to other health professionals to emphasize this inequity. i think that we make less than half of what the pharmacists at our [qualitative research in medicine & healthcare 2018; 2:7376] [page 125] article no nco mm er cia l u se on ly hospital make, and other – and like the p.t.’s and things like that – and the o.t.’s... and i have a master’s degree and i make less than half of them. in order to counter their perceived unequitable salaries, members reported having multiple jobs. one rd explained that she strings things together by working a clinical job at a long-term care nursing facility, an advising job at a college campus, and a nutritional messaging job with a food service company. the participants who identified money as a reason for frustrations also talked about a perceived wage ceiling within the occupation and greater professional inequalities within the health field. many members of the academy felt that they were paid less than other health professionals, though they had similar or higher levels of educational training and/or experience. members frequently voiced frustration that other healthcare providers and the general public did not understand the dietetics occupation or differentiate it from other nutritional professions. many doubted that the academy was known outside of specific public health circles and wondered if the public understood the occupation’s value. members repeatedly told stories about how rds were often confused with nutritionists, which they perceived as negative. academy members lamented this confusion, suggesting that it dismissed rds’ specialized training, skill set, and expertise. one dietitian began her interview by assuming that this was a common theme in other interviews: and i’m sure you’ve probably heard that before where people – you talk to people, you want to be a dietitian, and they’re like, what is that. so we’re really trying to get that information out there. another member commented that, when he gave public lectures, the audiences rarely understood the difference between nutritionists and dietitians: they all have that kind of confusion. so it’s nothing new…but at least luckily i have the opportunity to tell some people. as rds made sense of who they were in relation to their jobs, they struggled with the perception that their profession lacked status and public recognition. further, they continuously voiced frustration about the confusion between dietitians and nutritionists, emphasizing the need to frame the rd profession as distinct from and more legitimate than other nutrition professions. academy members’ stories and frustrations suggest that their expectations for professionalization are not being met. interviewees reported specifically not feeling respected as professionals by the public and by other healthcare professionals. they also were concerned that they were being underpaid for their professional-level services. to legitimize and elevate their profession, members strategically created a discursive turf war to set professional boundaries between nutritionists and dietitians. constructing a turf war members’ stories about unequal pay and public confusion about their occupation suggest that, despite being members of a regulated profession, rds are still working to achieve professionalization. their comments reflected continuity with earlier identity work that suggested, dietitians have a melancholia... associated with lack of recognition, loss arising from unfulfilled promises of professionalism and spiritual injury.7 their unmet professional expectations included disappointment that they were not seen as having nutritional expertise that is different from nutritionists. all of these frustrations created a space for a professional turf war between dietitians and nutritionists. academy members create a discursive turf war by i) (re)claiming nutritional expertise and ii) crafting monetary legitimacy. (re)claiming expertise academy members feel professionally marginalized. weick et al. argued that individuals use organizational sensemaking to organize unmet expectations.26 sensemaking is a communication process that seeks to answer what’s going on here and what do i do next.26 when faced with perceived marginalization, members of the academy used organizational sensemaking to claim control over formal nutritional knowledge and (re)define themselves as professionals. this process involves categorizing, labeling, and creating hierarchies to bring order to their occupational identity.26 to legitimize and elevate their profession, members used turf war rhetoric to create a hierarchy of nutritional professionals. as one member put it, really there are turf wars happening in the states on who gets to practice as a dietitian or practice the practice of nutrition. and dietitians fight long and hard to have the control of the nutrition field. drawing on this rd’s comment, we describe the material, discursive, and organizational practices that academy members used to bound their profession through a rhetorical turf war. academy members symbolized and communicated their expertise by discussing their education and rd certification to differentiate their profession. one member compared his education to basically [getting] a pre-med degree, while another emphasized that over 50% of dietitians who are practicing and [are academy] members also have a master’s degree, so that’s at least five to six years of education on top of their internship. members described their rd certification as culminating proof of their extensive training and as validation of their expertise. as described by one member, it is a credential that means that you have a certain set of skills that you have…mastered and demonstrated your mastery of. another member used her certification to illustrate her journey to becoming a professional. she emphasized the specific course load of work that you have to do, undergraduate, bachelor’s degree work in sciences –in nutritional sciences and food safety. she then noted the exam that rds must pass to become registered and discussed her profession as a certified practice. this member went into great detail about how she became a professional, noting the specific, bureaucratic symbols and milestones along the way, such as her course load and the [page 126] [qualitative research in medicine & healthcare 2018; 2:7376] article no nco mm er cia l u se on ly exam. other academy members also made claims to professionalism by discussing the milestones – like their education and certification – that best communicated their journey to becoming professional. in this view, the profession is framed as an achievement to be gained after long years of hard work. members’ descriptions of their profession as an achievement starkly contrasted with how members described and defined a nutritionist. while rds self-defined themselves as specialized, scientifically trained professionals, nutritionists were continually described as having an unknown level of expertise and status. one member described a nutritionist as anyone that self-proclaims as an expert – and they don’t even have to say expert, but just someone who gives nutritional advice. another member further explained, the term nutritionist is not defined. it’s undefined. so you could read a book about diets or a book about nutritional science and call yourself a nutritionist. anyone can call themselves a nutritionist because it’s not overseen by an entity. others went even further and described nutritionists as lacking any practical experience in public health and nutrition. while the rd process is highly structured, bureaucratic, and framed as legitimate, members described nutritionists as having varying – often-unknown – degrees of expertise. by contrasting nutritionists’ occupational ambiguity with the highly specific regulations of rds, academy members created a nutritional other. members drew on the nutritional other to communicate what it is that they are not: nutritionists are undefined; rds are certified; nutritionists are amateurs or have ambiguous educational backgrounds; rd are carefully regulated and therefore legitimate. members used nutritionists – as the other – to elevate their own profession. one member noted, as far as job descriptions go…rd is kind of a distinction and level of education whereas…anyone that wants to call themselves a nutritionist, they don’t really have to have anything to verify that. this strategy fits into ashcraft, muhr, rennstam, and sullivan’s review of the literature on how professions are crafted.27 they argued that the construction of professions entails not only aligning occupations with particular people, but also contrasting them with lowly others.27 those that are excluded from the profession are therefore a necessary part of occupational identity. the implication is that, while members often complained about nutritionists, they are actually an important component of how members made sense of their occupational identity and claimed expertise. to make sense of their unmet occupational expectations, members framed themselves as more educated, trained, and/or legitimate than nutritionists, drawing a hierarchy of expertise within the nutritional field to strategically create professionalization. as one member succinctly explained, a dietitian is a higher level than a nutritionist. some members added to the hierarchy by comparing rds’ work to health professions that are already seen as legitimate, such as doctors or physicians: so, what i’d like to see is in the future the dietitian is recognized as important as the doctor. when we talk about nutrition as a preventive medicine, it’s important. the hierarchy creates an us (rds) and a them (nutritionists) dichotomy that rds use to claim expertise for their profession. this hierarchy is thus one way that members labeled, categorized, and ordered their work to make sense of their occupational identity. despite this constructed hierarchy, members often noted that while this hierarchy might be true in their opinion, the public still did not understand this difference. crafting monetary legitimacy given rds’ unmet professional expectations, particularly around salaries and perceptions of legitimacy, members looked to the academy to increase economic benefits for their profession. members discussed the academy as an important resource for helping to differentiate between nutritionists and rds and to elevate the profession of dietetics. for example, one member noted how the academy defined the dietetic profession by describing a page on the academy’s website: there’s actually a link that simply breaks down the difference between a dietitian and a nutritionist…the academy plays a great role in that – in really trying to educate the public about the difference in the qualifications and how to safely choose a practitioner for their nutrition health care. for these rds, the academy plays an active role in creating economic benefits for dietitians by promoting the turf war rhetoric to limit nutritionists’ influence and scope of work. academy members discussed their desire to claim nutritional expertise for themselves so that their services – and only rd services – would be reimbursable by insurance agencies. many members advocated for state licensures that would differentiate the profession and, hopefully, allow exclusive insurance reimbursement opportunities. one member explained, every state has an opportunity to have licensed dietitians, just like every state license. she went on to describe the concept of state licensure and insurance reimbursements, especially given new healthcare laws, by comparing rds to other medical professionals: if you’re a doctor, for example, or a physical therapist, you have a state exam and a state licensure which allows you to bill and collect payments. and in the state of washington, we are not licensed dietitians and the regulations are written for licensed health care professionals which could, depending on which way the political winds blow – could mean that dietitians who are not licensed cannot be reimbursed. similarly, another member explained her participation in an advocacy group by saying that she wanted her profession to be at the front in terms of knowledge of food and nutrition to make sure that we’re getting reimbursed [qualitative research in medicine & healthcare 2018; 2:7376] [page 127] article no nco mm er cia l u se on ly for those services; where they already are being reimbursed for and then where we would like to see them be reimbursed for. rds were very aware that their dismissal of nutritionists had economic implications. these members’ interest in insurance reimbursements highlights how the turf war rhetoric was being used as a professionalization strategy. as members differentiated themselves from other nutritionists, they sought to create greater exclusivity in their field. this reinforces freidson’s view that credentialing was designed to build an occupational cartel that has the exclusive right to offer specific services, a right sustained by the state.13 the question over which nutritional professions are licensed and reimbursable – nutritionists, rds, or both – is contested. by using the turf war to claim rds as the nutritional experts, members hoped to become the only reimbursable nutritional experts. rds also viewed the academy’s professionalization strategies as extending beyond individual monetary benefits and having broader impacts for public health. when discussing the academy’s mission, one member noted, it is about positioning members as nutrition experts and it is about the health of the consuming public. while this member sees the value in establishing rds as the nutritional expert, they also situate the changes as having the potential to positively influence public health outcomes. other members mirrored their concern for public health, but were concerned about their ability to affect positive changes because they did not feel the public fully understood their claims to expertise. commenting on why the academy changed its name, one member said, if you say dietetics, people don’t know what you’re talking about. so, if you put that word “nutrition” in there, it helps them understand better. this member perceived lack of public support as the impetus for the name change and hoped that by changing the name the academy would garner public support for the profession and subsequently improved health outcomes. discussion rds and their professional association, the academy, are actively engaged in strategic communication to attain and maintain professional status. rds have long had to establish and defend their professional legitimacy within the broader healthcare context. however, their contemporary struggle is marked by efforts to distinguish themselves as the nutritional experts while simultaneously excluding other occupations that provide nutritional advice and services, specifically nutritionists. indeed, questions surrounding the differences between nutritionists and dietitians are pervasive and hinder professionalization. as freidson argued, it is hard to justify a certification when another profession can seemingly do the same job using a different occupational title.13 the academy has a page on its website that specifically addresses the reasons behind its name change, noting that the new name better communicates who we are and what we do. we are the nutrition experts.23 the success of the name change, according to the academy, also provided the catalyst to offer the new title, registered dietitian nutritionist. the name was approved by elected members of the academy’s house of delegates, as well as the organizational units that manage the rd credential.24 thus, the changes to incorporate the word nutrition(ist) into the academy and the rdn title suggest an institutional acknowledgement of the struggle between rds and nutritionists as well as the academy’s response – to delineate professional identities by claiming nutritional expertise as its own. we argue the individual rds/rdns as well as the academy itself stand to gain from the incorporation of the word nutrition(ist), though this gain comes at the expense of other nutrition professionals. the title change serves to benefit individual professionals because it distinguishes between rds/rdns and nutritionists. differentiating rd/rdn knowledge and services will help members of the public identify qualified nutritional experts. this boundary setting activity also serves to establish/ maintain the legitimacy of the rd/rdn profession in the grander context of health care, by ensuring training and scientific grounding of rds/rdn. in addition to the organizational discursive practices, we found that individual rds/rdns were interested in and actively engaged professional boundaries setting and spanning. interviewees simultaneously claimed nutritional expertise as their territory and sought to differentiate and defend their profession from nutritionists. in addition to supporting the professional legitimacy of rd/rdns, these discursive choices also establish/reinforce the legitimacy of the professional organization itself. organizational legitimacy enhances organization survival. by securing the recognition of the public and other relevant organizations, the academy stands to increase competitiveness for resources (such as grants, sponsorships, and member dues). additionally, organizational legitimacy makes the academy a necessary and desirable social organization for those wanting to practice dietetics. the academy is able to leverage their legitimacy to recruiting new rd/rdn members. its structured certification and continuing education process also ensures that rd/rdns continue to pay for their membership, conferences, conference materials, and educational credits. theoretical implications our findings contribute to and complicate past scholarship on professionalization. we found that a professional turf war discourse reflected a set of purposeful communication activities aimed at claiming rds right to be the nutritional experts. their turf war discourse strategically excluded the advice and services provided by nutritionists, framing rds as the only competent and [page 128] [qualitative research in medicine & healthcare 2018; 2:7376] article no nco mm er cia l u se on ly responsible group to address nutritional issues, according to academy members. these findings align with theorizing of professionalization as a strategic process,9,10 and support a strategic communication-based approach to studying professionalization. the use of purposeful turf war discourse as a rhetorical strategy is a novel contribution to theorizing professionalization. in addition to claiming jurisdiction over rights to membership and scope of practice, professional discourses of inclusion and exclusion can be used to create and foster conflict among experts as a way of legitimizing one group over the other. the potential ramifications of professional turf war discourses aimed at creating conflict and discord to establish legitimacy are concerning. healthcare systems around the world are adopting inter-professional collaborative care models to better address complex health and wellness issues with the goal of improving patient and community outcomes.19 professional territorialism on collaborative teams are a difficult barrier to effective collaboration and healthcare provision. to effectively engage in inter-professional collaborative care, team members will have to continually co-construct, maintain, and sometimes defend their professional legitimacy with all of these group members, clients, and communities. dieticians and nutritionists have struggled to be seen as legitimate members of healthcare teams.6,28 by using conflict to achieve professionalization, professions exclude and diminish the legitimacy of a potentially close ally they have in their larger fight for legitimacy on collaborative health teams. in addition to contributing to understandings of how a turf war can be used to professionalize, our findings also contribute to strategic communication-based understandings of professionalization by describing the attempted effects of the turf war discourse on professional boundaries. past research has described professionalization as a set of discursive boundary setting practices most often between distinct fields, such as medical doctors and alternative health providers.16 our findings highlight tensions present in the everyday use of a professional identity when it performs as a distinct identity from those of people who also offer similar occupational services, in this case the provision on nutritional care. counter to previous claims that professional identity is fluid, 2 the rhetorical turf war here shows how this fluidity is problematic when trying to stake a professional claim. instead, the rhetorical turf war is about solidifying professional identity. weick and colleagues argued that organizational sensemaking contributes to identity negotiations by using language, talk, and communication to organize chaos.26 by labeling nutritionists as undefined or amateurs, they use nutritionists as foils as a way to reinforce their occupational identities. additionally, members used bureaucratic, objective symbols – such as their education and certification – to create a hierarchy in which rds were shown to be more than nutritionists. by establishing the hierarchy, the turf war’s message is clear: rds are more qualified, more trained, more professional. within the academy, members participate in organizational sensemaking and identity negotiations by labeling, categorizing, and dismissing what they are not – nutritionists. in addition to setting boundaries to distinguish their expertise, skills, and services from other related occupations (nutritionists), we found that rds use a turf war discourse to also take away another occupation that has a scope of expertise and practice. this is a meaningful contribution to theorizing professionalization discourses. turf war discourses can be both defensive and offensive. professions can use the turf war discourse to maintain current boundaries and/or advance a profession’s boundaries, at the exclusion of other occupations. future research should compare and contrast boundary setting and spanning practices between fields that offer similar services as well as distinct services. practical implications our findings have practical implications for rds and nutritionists alike. the turf war discourse currently being waged by dietitians and the academy simultaneously highlights and diminishes rds’ identities as nutritionists. we argue that the fluidity of professional identities has benefits and drawbacks. at the organizational level, the profession attempts to gain control over nutritional knowledge and services by incorporating the term nutrition(ist) into its formal titles. the academy argued that these changes increased public awareness of the field and drove the general public and non-experts to the profession’s formal knowledge.1 indeed, a key to professionalization is that the public and non-experts are aware of the field and its advice or services. however, we found that the interviewees seemed bothered by the potential blurring of rd and nutritionist identities. when asked about the distinctions between rds and nutritionists, interviewees recognized similarities and were able to clearly articulate differences. we also found that the interviewees tended to overcompensate with information that would bolster their performance of professional legitimacy. specifically, interviewees emphasized the rigor of the accreditation process and their reliance on the scientific method. interviewees reported using similar techniques to boost their performance of a competent professional when participating with inter-professional teams comprised of non-experts, such as other health care providers, directors of public health, or policy makers. our findings also highlight the interplay of material and social realities of professionalization. rds were motivated to engage in turf war discourses as a way to establish professional legitimacy and exclusivity. ultimately, their turf war stemmed from unmet professional expectations related to respect and compensation. a turf war discourse was thought to increase their monetary standing as a health profession. by limiting nutritionists’ ability to [qualitative research in medicine & healthcare 2018; 2:7376] [page 129] article no nco mm er cia l u se on ly provide nutritional services and advice, rds hoped to become the only reimbursable nutritional experts, which, in turn, frames them as the only legitimate nutritional experts. theoretically, this furthers meisenbach’s conceptualization of occupational identity.8 as norander, mazer, and bates explained, the material realities of becoming a [professional] shape the ways in which [professionals] discursively construct the potentials and limits of their professions.29 by using credentials and reimbursements to craft their professional identity, rds rhetorically create the structures of their profession. although this helps to create the clear boundaries of the profession, it also constrains future opportunities and growth. what is most interesting about the potential gains and losses of the turf war discourse is that many rd interviewees voiced a long-history of unmet professional expectations, suggesting that, to date, professionalization strategies have not worked. the turf war discourses were reported to be motivated by unmet professionalization, which was ascribed in large part to the lack of clarity between the boundaries that separate nutritionist and rds. however, it is very important for both rds and nutritionists to consider if the lack of professional boundary clarity is the real issue. professional identity is deeply rooted in conflicted, shifting, historical, cultural, gendered discourses.27 past research has situated dietetics and nutritionists as gendered occupations that face a host of cultural challenges.3,28 through this lens, waging an intraprofessional turf war with nutritionist is perhaps an ineffective professionalization strategy. we ask, are academy members working to solve the right problem? by using the turf war discourses, rds may be further marginalizing their profession and another already-marginalized occupation—the nutritionist. perhaps, rds and nutritionists should join efforts to address the larger cultural and historical constraints that bind both groups. conclusions there are several limitations and opportunities for future research. first, our findings only reflect one voice in the turf war: the rd. our focus on rds reflects an indepth examination of one profession’s purposeful attempts to claim and defend a professional turf. while an in-depth analysis is valuable, our findings are limited because they do not take into account the lived experiences or implications of the turf war discourse for other fields. specifically, this analysis does not include the nutritionist’s voice and experiences. however, more generally it also does not take into account how the turf war discourses are actually recognized or experienced by other providers in the health industry. future research should investigate how turf war discourses are experienced by other healthcare professionals, including but not limited to, nutritionists. it would be interesting to examine what, if any, role these workers have in co-creating the turf war and potential impacts engaging or ignoring the turf war has on their work life. in addition to examining the dynamic co-construction of the turf war, research should examine the broader cultural and historical discourses surrounding the professionalization of dietetics. we did not directly analyze historical and/or cultural discourses within and beyond the academy’s borders. additional research is needed to understand how cultural and historic discourses are enabling and constraining the academy of nutrition and dietetics and the occupation of dietetics. for example, research could examine discourses that support or challenge the hierarchical nature of medicine and health occupations in relation to one another. the social construction of power and authority of physicians within allied health care would be interesting to compare to that of dieticians. it would also be valuable to examine how cultural and historical discourses outside the health care arena shape the professionalization of medicine and health occupations. in the context of rds, it would be interesting for future research to examine how media representations of food politics and public 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[qualitative research in medicine & healthcare 2018; 2:7376] [page 131] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2021; 5:9489] [page 23] introduction patient involvement has increasingly become part of the way european healthcare systems seek to organise and produce healthcare services.1-3 in denmark, patient involvement is considered relatively well-developed at the formal level; patients have extensive rights to choose providers and to voice opinions about services.3,4 the literature has seen a rapid increase in studies of involvement and related concepts such as empowerment and patient-centred care. in different constellations, patient involvement is seen as a means to improve healthcare, provide more equal, less hierarchical clinicianpatient relationships, and increase patient influence. the patient is perceived as having progressed from being a passive service recipient. instead, patients are considered resourceful and active individuals who can take responsibility for self-care.3,5,6 patient involvement covers various understandings and practices.2,7,8 scholars have generally pointed out a lack of clarity in the definition and purpose of patient involvement.7,9,10 conceptually, models and frameworks have been developed that define different types of involvement.1,11,12 in the nordic countries, in key health policy documents and reports, various involvement discourses have been identified.13,14 while these analyses contribute important knowledge about involvement at the policy level and provide tools to elucidate the lack of theoretical clarity, they the ruling relations of patient involvement in cardiac rehabilitation programs nynne barchager department of people and technology, roskilde university, roskilde, denmark abstract patient involvement has often been defined and examined on the basis of conceptual theoretical frameworks. this article explores patient involvement contextually and locally, in encounters between patients and healthcare professionals in cardiac rehabilitation in denmark. with inspiration from institutional ethnography, the goal is to unpack what involvement actually implies in rehabilitation activities. the analysis provides micro-sociological insights into how patient involvement is constituted and institutionally conditioned and shows how textually mediated ruling relations regulate activities and interactions, shaping patient involvement in local practices. the analysis reveals how patient involvement primarily relates to healthcare professionals involving patients in health knowledge. it explores how national guidelines and local instructions for healthcare professionals frame understandings of patient needs and problems. the concluding discussion highlights how patients have limited opportunities to influence their own care process. it also points out how it is left to the individual healthcare professional to solve contradictions between institutionally defined tasks and the ambition of patient involvement. nynne barchager, department of people and technology, roskilde university, universitetsvej 1, building 44.1, 4000 roskilde, denmark. e-mail: nyba@ruc.dk key words: patient involvement; institutional ethnography; cardiac rehabilitation; clinical guidelines. acknowledgements: a big thank you to the healthcare professionals who welcomed me, let me listen to their talks with patients, and told me about their practice. an equally big thank you to the cardiac patients who told me about their lives and experiences of contracting heart disease and allowed me to join them along their care pathways. i would also like to thank betina dybbroe for valuable comments on drafts of the article. conflict of interest: the author declares no conflict of interest. funding statement: the article is based on the phd study conducted by the author, which was carried out with joint funding from roskilde university and the danish region mentioned in the article. the danish region in question is anonymized in the article to maintain the anonymity of the hospital ward where the fieldwork was conducted. availability of data and materials: all documents analysed are publicly available. local instructions from the hospital are publicly available as well; i have not provided the link to these, as i wish to maintain the anonymity of the hospital ward. ethics approval and consent to participate: the study was registered and approved by the danish data protection agency. relevant permission to conduct fieldwork was obtained from the hospital management and from involved health professionals and patients. all participants are anonymised. the patients participating in the study have all been informed orally and in writing and gave their consent. received for publication: 12 november 2020. accepted for publication: 1 april 2021. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2021 licensee pagepress, italy qualitative research in medicine & healthcare 2021; 5:9489 doi:10.4081/qrmh.2021.9489 qualitative research in medicine & healthcare 2021; volume 5:9489 no nco mm er cia l u se on ly reveal little about how involvement is manifest in specific practice contexts. this article deals with involvement at a local and contextual level in a hospital ward in denmark. by analysing data from more comprehensive ethnographic fieldwork, the article aims to produce micro-sociological insights into how involvement is constituted in actual activities, and how it is institutionally conditioned and shaped. empirical studies of involvement are often based on specific definitions or models of involvement to which practices are then related; the conclusions then reveal the discrepancies between ideal and practice.15-17 this study employs a different approach. methodologically and analytically, the article draws inspiration from d. e. smith’s institutional ethnography (ie). this implies an inductive approach where discovery is central; the research process does not start from predefined theoretical understandings or concepts. instead, people’s experiences set the problematic of the study.18 my point of departure for studying involvement with this approach is an episode from my initial fieldwork: i was conducting a pilot study, which involved accompanying various clinicians in outpatient rehabilitation of cardiology patients, and i was observing a doctor’s consultation with a 77-year-old woman. the woman had not participated in the physical exercise that was part of the rehabilitation program, and when asked for her reason for this, she explained that it was due to influenza and lack of energy. during their conversation, the doctor repeatedly recommended exercise, emphasised the importance of this and informed her of her options: she could either exercise in the outpatient program at the hospital or enter a municipal exercise program. she expressed her preference for the outpatient program, but maintained that she wanted to wait until she felt better. the conversation could be analysed as an example of shared decision-making, an involvement model that has received particular attention in danish healthcare. the idea is to facilitate a partnership between patient and clinician, where mutual exchange of knowledge and information forms the basis for decision-making. however, when the woman had left the room the doctor turned to me with these words: i make a big point of telling her how important exercise is, but she still doesn’t do it…. how can you involve someone like her?? she says she has no extra energy. how can i persuade her to do what’s good for her?? what struck me about this is that she was not recognised as a patient who made informed decisions, but instead, was articulated as representing a failed attempt at patient involvement. this posed a problem to me: how does he actually understand involvement? what should i consider as involvement if this was not a case of it? in ie, the researcher tries to discover and unpack what specific actions are concealed in the use of abstract and taken-for-granted words (such as involvement). it is not assumed that involvement exists (or should exist) as the same phenomenon across contexts; instead, the researcher makes it an empirical issue to reveal precisely how it exists.19 the focus is on exploring how practices (specific activities, actions, and interactions) are structured by objectified, extra-local forms of social organisation, which ie terms “ruling relations.” ruling relations are constituted externally to the local particularity of people and places and are mainly textually mediated. texts such as policy documents and guidelines are read and taken up in specific practices; they thus regulate chains of action across local contexts and make actors and actions institutionally recognizable. the aim of this article is thus not to conduct a policy analysis, but to analyse how policies and other texts are activated in practice, affecting the ways in which involvement can manifest itself in specific local activities and interactions in cardiac rehabilitation, as well as how involvement is woven into and shaped by certain logics from practice. patient involvement in danish cardiac care in danish healthcare, we see an ever-increasing focus on patient involvement. historically, the right to informed consent became a legal requirement in 1992; patients must be informed of the possibilities and risks of treatment and consent to treatment before it begins. the health act guarantees all inhabitants of denmark the right to treatment, free choice of hospital, guaranteed waiting times, and involvement in treatment decisions. systematic involvement of patients is part of the national quality assurance program, where hospitals are regularly accredited based on various general objectives. danish regional healthcare also includes patient involvement in its quality, patient, and communication policies. an involvement model that has received particular attention in danish healthcare is shared decision-making,8,15 and in 2016, the government allocated dkk 38 million for the development of tools to support shared decision-making with a view to introducing these in many areas of healthcare, including cardiology. in cardiology, patient involvement was placed on the agenda following the danrehab trial,20 while the report cardiac rehabilitation: a medical technology evaluation, evidence from the literature and the danrehab trial21 emphasised that the basis for successful rehabilitation is patient involvement. patient involvement is important in cardiology because heart patients often have difficulty in maintaining long-term lifestyle changes.22 they also have complex, non-linear recovery processes and individually unique ways of dealing with heart disease.23-25 positive effects of patient involvement include perceived greater ownership [page 24] [qualitative research in medicine & healthcare 2021; 5:9489] article no nco mm er cia l u se on ly and responsibility for the care process and higher treatment satisfaction.15,21,26 when cardiac care pathways were introduced in 2010, patient involvement was formally included in official recommendations. patient pathways apply to the entire care process (from suspicion of disease to treatment, rehabilitation, follow-up care, and monitoring) and are used across sectors, units and professional groups. they are part of a more general transformation in nordic healthcare services towards increasing standardisation with the aim of creating uniform services and levels of quality, while also reducing costs. the general move towards standardisation has been criticised for upsetting the balance between humanistic and medical aspects of practice, and the concept of patient pathways has been highlighted as a policy-driven transformation that challenges rather than increases quality of care.27,28 concerning cardiac care, the danish health authority states that pathways aim to create a more uniform, consistent process, shorter waiting times, and a more appropriate prioritisation of resources.29 this suggests an ambition to make pathways more efficient, but also more reliable through increased formal interdisciplinary collaboration and coordination. in the context of the cardiac pathways, patient involvement is included as a means of enhancing consistency and continuity. in the following, i outline the analytical approach and the empirical material that analysis draws on which consists of observations from a hospital ward and some of the key policy documents in cardiac rehabilitation in denmark. i will then proceed to analyse how these texts regulate local practice and discus the implications of this in relation to patient involvement. an institutional ethnographic approach methodologically and analytically, this article is inspired by ie. one such inspiration is to examine “people’s actual doings” (p. 55). 18 instead of assuming that a phenomenon (such as involvement) exists in the same form across different contexts. in ie, the researcher tries to unpack what practices are concealed in the abstract and taken-for-granted use of nominalizations. nominalizations, such as involvement, are terms that convert verb forms into nominal forms thereby rendering invisible the specific subjects and their activities, ignoring that “someone or something does something or is supposed to do something” (p. 111).18 the idea is to invert the procedure and reinstate people and their activities. in my context, this means that i focus on involvement as a process where someone must involve somebody in something, and i concentrate on the specific local events, i.e. the rehabilitation activities, which both patients and healthcare professionals are a part of. although ie focuses on the empirical description of local activities, it is equally important to explore how these activities are linked to objectified extra-local ruling relations. ruling relations denote trans-local forms of social organisation and social relations that are objectified in the sense that they are constituted externally to the local particularity of people and places.18 a key point for smith is that people’s actual doings are coordinated by ruling relations, which are mainly textually mediated. texts can be read and adopted across local contexts and can therefore regulate and standardise people’s activities independently of time, place and person; people’s actions become recognizable as institutional activities.19 according to smith, texts must be considered as something that happens. they enter and are activated in specific situations, where they organise and regulate actions, consciousness, and subjectivity. texts are activated when they are read, watched or heard. the readers engage in “text-reader conversations” (p. 174), described by smith as the consciousness being brought into an active relationship with intentions originating beyond the local.19 “its activation by a reader inserts the text’s message into the local setting and the sequence of action into which it is read” (p.105).18 unlike face-to-face conversations, text-reader conversations are characterized by the one side of the conversation being fixed and unresponsive. the other side of the conversation – the reader – is active in responding to, interpreting and acting from (interpretations of) the text.18 the text, however, remains a constant point of reference against which particular interpretations can be checked, and in this constancy, lies the standardising effect.19 however, it is important to note that they do not determine actions, but rather regulate and shape institutional actions in similar ways across local contexts.19 exactly how specific texts happen must be discovered in the local context.19 the ie perspective thus captures the particular and the extra-local at the same time. while centring on specific subjects and their actual activities, an ie perspective views subjectivity and agency as being constituted in texts through institutionally defined properties and categories: “subjectivity…organised as objectives to be pursued, tasks to be undertaken, [and]others to be connected with…. such organisational/ institutional categories locate subjects in procedures, processes, tasks, and so on that are standardised in authorised texts” (p. 185).19 the subject of analysis is thus not the individual, but rather how subjectivity is organised and how institutional procedures localise subjects as actors. consequently, this article focuses on clinicians and patients as actors and their institutionally orchestrated actions and interactions. empirical material this article is primarily based on empirical material from observations in a cardiology ward. these observations were part of a larger longitudinal ethnographic study, which followed five heart patients from discharge, throughout their rehabilitation and continued subsequent to the termi [qualitative research in medicine & healthcare 2021; 5:9489] [page 25] article no nco mm er cia l u se on ly nation of the outpatient program up until one year after their heart incident. (see the appendix for a more detailed description of the full research design.) the empirical material consists of field notes and transcribed recordings of clinician-patient dialogues both from a preliminary pilot study and the main study in which i attended various outpatient rehabilitation activities including patient education sessions, individual consultations with doctors, nurses, dietitians, psychologists and physiotherapists, and an eight-week physical training program. the ward was selected as an example of a hospital ward in a danish region with patient involvement as an objective. relevant permission was obtained from the hospital management. the names of patients in this article have been replaced by pseudonyms. all were informed about the study orally and in writing, gave their consent. the referred dialogues with healthcare professionals were informal and are all anonymised. the study was registered and approved by the danish data protection agency. during the fieldwork period, preliminary observations were presented and commented on by a reference group consisting of clinicians from the cardiology ward. excerpts from the data and draft analyses were also presented and discussed with other phd students at interpretation and analysis workshops at roskilde university. analyses also draw on data from key policy documents and local instructions, as i will now proceed to elaborate further on below. selection and description of active texts in a complex institution like a hospital, many texts will naturally be activated in daily practice, and they could not all be examined in this study. in my analysis of rehabilitation activities, i include certain texts as particularly important and active. the texts were selected after the process of conducting fieldwork was terminated and during the process of analysis. the first is the descriptioni of patient care pathway for unstable angina pectoris (uap) and acute myocardial infarction without st elevation (nstemi),29 which has a coordinating function in pathways that cross sectors, units, and professional groups. each step in the pathway from suspicion of heart disease to treatment and rehabilitation is described, including procedures, timings, clinical actions and decisions, logistical actions, administrative procedure codes, information for patients, and which actors are involved and responsible for the various steps. this is the only text discussed with an explicit focus on patient involvement, and i therefore devote some space to how involvement emerges here. as mentioned, patient pathways aim to create more consistency and continuity in patient care. consistency and continuity refer to the coordination of activities between different sectors, units and healthcare professionals involved in the patient pathway in order to minimise unnecessary waiting time.29 it is also emphasised that no patient should feel left alone without involvement, clear information, and scheduled appointments.29 in the pathway description, patient involvement implies ensuring that the patient has an overview of the pathway, which appears to mean informing the patient about the treatment and pathway: “as part of the communication, patients and their relatives must be continuously involved and informed about results of examinations and the next stage of the pathway” (p. 10).29 the document does not actually define involvement, but links it to the legal requirement for informed consent. it states: “the legal requirement for informed consent must ensure that the patient is involved in all treatment decisions. the patient and the healthcare professional must jointly decide on the pathway, to which the patient must consent, after receiving complete information” (p. 10).29 this does not appear to suggest an understanding of involvement that goes beyond the requirement of informed consent. further, all the specific decisions described for each stage of the pathway are defined as clinical and to be taken by the professionals. elsewhere, the wording suggests that involvement not only relates to information for patients, but also to their resources and needs, e.g.: “in addition to knowledge and understanding of the patient’s individual communicative ability, patient involvement requires professionals to actively involve the resources and accommodate the needs of the patient and the patient’s relatives” (p. 11).29 the document states that rehabilitation must be organised individually in consultation with the patient, but it must also be based on the pathway standard, “where the separate stages are organised as well-defined events in terms of timing and content and follow a pre-determined path” (p. 3).29 the patient is thus supposed to participate in planning the pathway, but there seems to be limited scope for this in a pathway that is pre-determined and standardised in terms of timing and content. moreover, responsibility for assessing patient needs lies with the professionals. what must be assessed is whether the patient should be offered all or only parts of the pathway. there is thus no provision for the patient to be active as an actual decision-maker, and what the patient may accept or reject are activities in a standardised offer. apart from the above, there is no indication of the patient’s role in the process. the only patient contribution [page 26] [qualitative research in medicine & healthcare 2021; 5:9489] article i in 2017, the danish health authority decided to phase out the cardiac care pathways described in their form at the time. the reasons were that the procedures were too inflexible and difficult to use in everyday clinical practice and particularly, that the stipulated periods for various actions made little sense to patients and professionals. the pathways were replaced by a series of recommendations based on their content. the professional basis thus remains unchanged, while the fixed periods and requirements for additional registration in the pathway description are no longer valid. no nco mm er cia l u se on ly mentioned is informed consent, and there is no further explanation of actively involving the patient’s resources or of the patient needs to be met. the second text is the national clinical guideline for cardiac rehabilitation30 which describes recommendations and best practice for rehabilitation and its elements. the document provides evidence for these elements, which include both specific activities and the content of the program, such as physical exercise, patient education, psychosocial care, detection of anxiety and depression, dietary interventions, and smoking cessation. further, it provides instructions for how to systematically refer to the pathway, handle barriers to adherence, and examine patients’ employment situation. the document is targeted at healthcare professionals and “can be used by professionals in decision-making about appropriate and sound clinical care in specific situations” (p. 8).30 the guidelines are not legally binding, but the danish health authority recommends following them, and decisions that deviate from the recommendations must be justified. in addition, the regular accreditations involve an assessment of whether the recommendations have been followed.30 the final type of text is regional or hospital-based instructions for healthcare professionals. i was referred to these documents by healthcare professionals during the fieldwork. these are specific guidelines for each rehabilitation activity, describing the purpose, procedure, responsibility and documentation of the activity. these instructions can be seen as an intertextual complex: each instruction refers to other instructions that elaborate on various topics and areas of rehabilitation. for example, instructions for talks with individual patients describing topics to be reviewed can refer to other instructions in relation to the specific procedure for obtaining and providing information within the defined topics. all the instructions point out that the staff in the cardiology ward is responsible for knowing and following them. the selected texts have been included for various reasons: i) they all contain declarations on clinicians’ responsibility to know and follow the instructions, which means that clinicians are actually obliged to engage in text-reader conversations with these documents; ii) they all provide instructions on the content and procedures of the process that can be recognized in the organization of the actual rehabilitation activities and interactions, as the analysis will show. however, it should be noted that these documents do not actually contain anything about patient involvement, except for the pathway description, as described above. i will now proceed to analyse how the selected texts happen and are active in the interactions and activities of the local rehabilitation program. the first two sections focus primarily, but not exclusively, on how notions from the national documents (the pathway description and the national clinical guideline) unfold in practice. the last section will dedicate more attention to the regional and local instructions. this, however, is an analytical distinction. as analysis will show, several texts can be said to be at work simultaneously in specific interactions. rehabilitation as a bridge the description of the pathway divides it into three phases, where phase i is treatment, and phase ii is outpatient rehabilitation (the subject of this article); this includes optimisation of medical treatment, patient education, physical exercise, support for dietary change, smoking cessation, psychosocial support, clinical monitoring, and follow-up care. phase iii concerns the maintenance of preventative treatment and of achieved lifestyle changes. rehabilitation is thus a process that extends beyond outpatient care and into patients’ everyday lives. the division into phases has organising capacities in the sense that it creates a general narrative of linear progress (treatment → changing lifestyle → maintaining achieved lifestyle changes) that can be rediscovered in the actual interactions between patients and healthcare professionals. in specific pathways, it is taken up by the professionals, e.g., when rehabilitation is described as a bridge or a transition and patients must continue themselves: “this programme is time-limited. afterwards, you should continue yourself. you continue with this lifestyle change” (patient-physiotherapist dialogue, september 2015). “you exercise with us as a bridge to making progress yourself “(doctor-patient dialogue, june 2015). in this way, phase ii is interpreted as an intermediate station, before patients become capable of making progress themselves and assume responsibility for the preventative measures. this locates the patient, as an institutional category, in a transformative process of becoming responsible and capable of certain actions. it also carries the assumption that patients are not responsible or capable of making progress themselves when they initiate the program. the means of achieving this transformed patient becomes visible when we look closer at the actual activities and interactions in relation to the national clinical guideline. this text is important because it names, describes, and recommends the activities that a rehabilitation program should consist of e.g., physical exercise, dietary interventions, etc. the recommendation of patient education is particularly interesting because it enters practice in ways that are not confined to formal group teaching sessions. it seems to be at work in several other activities as well such as individual consultations and physical exercise. for example, physiotherapists teach patients about the different effects of interval exercise and strength training and of how to measure their level of physical exertion by the borg-scale. the national clinical guideline states that the aim of patient education is to “strengthen patients’ self-care, capacity for action and autonomy and give them an understanding of the disease and its treatment” (p. 21).30 [qualitative research in medicine & healthcare 2021; 5:9489] [page 27] article no nco mm er cia l u se on ly it recommends a combination of group teaching and individual counselling and lists the relevant general topics. in practice, group teaching focuses on general knowledge about the heart, heart disease and related topics (such as symptom recognition, medication, side effects, diet, mental reactions, exercise, legislation), which is in line with the recommendation. individual consultations cover the same topics as group teaching, but are more individualised, e.g., participants are told what was wrong with their heart in particular, and individual lifestyle adjustments are discussed based on diet, smoking, alcohol, and exercise (four key factors in denmark) and on the participant’s blood test results. the focus on knowledge to enhance patients’ own capacity for action from the national clinical guideline, is taken up by healthcare professionals in the group teaching sessions where patients are told: “this teaches you to take care of your condition yourself.” (doctor teaching about medication and side effects, july 2015) and “if you can understand what’s wrong, you can also understand what to do” (doctor giving introductory lesson, june 2015). in individual consultations, the educational aim is seen in the way patients are often asked to repeat what they remember from the teaching, e.g. about diet: “what are the good fats?” “what types of meat are heart-friendly?” “how many hours of exercise per week does the danish health authority recommend?” the focus is on patients’ (missing) knowledge, on making them understand, and on promoting compliant behaviour. one doctor told me that he tried to form an impression of whether they “had got the message,” whether they “would comply in the future,” whether he “could send them home with a clear conscience,” and whether “they take responsibility for their lives” (conversation with a doctor, june 2015). as mentioned previously, the national clinical guideline lists the general teaching topics. it also states that “the content must be based on topics that are important to patients and relatives to know more about. the general topics will be: the normal and the sick heart – symptoms, medication, diet and intake of fluids [etc.]” (p. 25).30 one could ask how it can be predefined in a policy document what will be important to patients if they are understood as actual and specific individuals. instead, here they are an institutional category characterised by a lack of certain knowledge. what is important to them is defined externally, from a place (the text) outside their own experience. in the local context of the rehabilitation program, the healthcare professionals solve this schism by trying to adapt information to patients based on their diagnosis and treatment and on an impression of what they already know. for example, during group teaching, the dietitian starts the lesson by asking them, in turn, what they consider heart-healthy food. they then mention low-fat food, vegetables, fish, etc. the dietitian then says, “you’ve grasped the essentials, but i didn’t hear you mention bread that much.” she talks about wholemeal bread and shows a power point slide with a diagram of foods divided into categories: green (food you basically cannot have enough of), yellow (food you can replace with something else) and red (food you really should cut down on) (lesson by a dietician, june 2015). it is thus a question of sorting and prioritising information and topics already determined: what patients must know to perform self-care in accordance with the evidence in the national clinical guideline. regarding individual consultations, a nurse told me that she uses the patient’s narrative as a basis for choosing relevant topics from among those defined in the local instruction. she explained that she uses the instruction as a checklist during conversations. in this way, the text enters the actual interactions. the nurse engages in a text-reader conversation interpreting the local instructions and the patient’s narrative in relation to each other thereby assessing what are the most important themes from the instruction in the case of this particular patient. further, the nurse told me that patients often “need knowledge about their particular illness and its development.” she explained to me that she often starts the conversation by getting them to talk about their illness experience and pathway and that this gives her an insight into how they have experienced their disease and what is important to them: “what they have understood out of everything they have been told. you cannot remember it all. they often need to know what exactly was wrong in their particular case, and what has been done” (conversation with nurse, august 2015). this suggests that the aim of the dialogue is not just to discover what is important to the patient in his or her own experience, but also to find out what the patient has understood. in other words, she is performing the task of identifying knowledge gaps, which can be seen as the activation of the educational scope in the national clinical guideline. so far, i have pointed out how different texts play a structuring part in the actual activities and interactions in the local context of the rehabilitation program. the pathway description organizes patient pathways in a general narrative of progress that places patients in a transformative process of becoming capable of taking responsibility for preventive measures themselves. this is to be achieved by educating the patient (based on the recommendations in the national clinical guideline), providing them with health knowledge that is deemed important independently of the individual patient. in these documents, the patient as an institutional category is characterized by a lack of knowledge. the notion of educating the patient can be seen as a ruling relation as it originates beyond the local context of the rehabilitation program, but structures the actual interactions between healthcare professionals and patients. it organises consciousness and actions as it orients healthcare professionals to the task of identifying [page 28] [qualitative research in medicine & healthcare 2021; 5:9489] article no nco mm er cia l u se on ly knowledge gaps in order to select information relevant to the actual patients in individual consultations as well as group teaching sessions. imperative and assumed decisions in cardiac rehabilitation in this section, i will address some of the implications of the previously mentioned narrative of progress in relation to actual dialogues drawn from two consultations. the narrative of progress was identified in the way the pathway description divides the pathway into phases and in healthcare professionals’ conceptualisation of the rehabilitation program as a bridge. the narrative implies the assumption that patients in rehabilitation make lifestyle changes in the areas mentioned, that in phase iii there are some achieved lifestyle changes that can be maintained. this presupposes patients who actually decide to change their life and succeed in this. the opposite scenario (that a patient does not make lifestyle changes or tries but fails) is not addressed in the text and thus does not seem to be an alternative that healthcare professionals can operate with. one professional told me during the fieldwork that patient involvement in decisions only seems relevant to a limited extent, as patients have already completed their treatment (i.e., specific interventions such as balloon dilation or bypass surgery). rehabilitation is thus understood as a kind of follow-up process when the decisions have already been made. in consultations with patients, healthcare professionals regularly assume that they have decided to make lifestyle changes. dialogues focus on which types of exercise the patient prefers and which dietary adjustments can be made. thus, the relevant decision is a question of which ones, while the decision to actually make lifestyle changes is a given. in christine’s case, for example, the nurse advises her to find a type of exercise that she feels like doing, since she does not like exercising in the gym. after talking about diet and blood tests, the nurse returns to the subject of exercise, telling christine that in, addition to improving her glucose levels, exercise does her a lot of good: nurse: you avoid lots of diseases. it’s healthy in many ways, she adds. christine: yes, i know that. nurse: i can explain it on a lower level. [she takes a model of an artery and begins to explain.] if the blood clot has been in any of the small arteries around the heart, they can’t always find it. this is likely in christine’s case, she explains, because they can see that there has been a blood clot, but have not found it. she explains how fatty deposits can occur, causing inflammation which can make the artery rupture more easily. exercise, the nurse continues, stabilises and prevents the arteries from rupturing so easily. exercise and a heart-friendly diet including vegetables and fibre, slow down the inflammatory process: nurse: what do you think about that? christine: well, yes, i must try that. the nurse says that sitting still and smoking is almost as risky. christine: yes, i do that. there’s no reason to lie about it. the nurse continues by saying that it will be great if christine can integrate exercise: nurse: you don’t want to come back here in five years. i’m sure you want to keep going for many more years. christine: you’re very nice, but i think i can find a better way to spend five days than coming here. nurse: alcohol? do you drink alcohol?” (dialogue between christine and a nurse, march 2016) integration of exercise in christine’s life appears here to be a matter of life and death; if she refuses to exercise, she is choosing death within five years. the fact that the choice to make lifestyle changes is not understood as a real choice can be seen as an extension of the close relationship between heart disease and lifestyle, implying that an unchanged lifestyle almost equates with the choice of a new blood clot. in this way, the decision to integrate exercise in her everyday life appears imperative. it is interesting to note how multiple texts seem to be at work in this interaction: i) the imperative to change lifestyle from the pathway description, ii) the nurse’s explanation of “what happens inside the artery” in line with the educational aim from the national clinical guideline, and iii) the sudden jump from one subject (exercise) of conversation to another (alcohol). this change of subject is not prompted by anything in the actual exchange but derives from somewhere outside the conversation, more specifically from the local instruction of nurse consultations that specifies the topics to be touched upon in this type of conversation. as a result, the instruction regulates the interaction in a way that makes the conversation resemble an interview more than an actual dialogue. returning to the subject of imperative decisions in the rehabilitation program, the following dialogue between ejner and a nurse, is an example of a consultation in which the decision to make lifestyle changes is challenged: nurse: so if you make a mental note of it, that everything from the animal kingdom is bad, except fish, and everything from plants is good. [qualitative research in medicine & healthcare 2021; 5:9489] [page 29] article no nco mm er cia l u se on ly ejner: that’s funny. all that healthy stuff. it’s usually more expensive. let’s say fish, for example. if i buy salmon for myself, that’s a hundred kroner, but you can buy mincemeat that costs twenty. then hell, i’d rather buy the mince. nurse: yes, well that’s— ejner: because you don’t get so much on a state pension. nurse: no, but once again— ejner: just occasionally, of course. nurse: it’s up to you. i can only inform you about what we recommend from here. of course, we know from many years of research that this is how we recommend you to live if you want to avoid getting ill again or your atherosclerosis getting worse. but, of course, i can’t, i can’t tell you to do it, you know. you choose yourself when you’re out shopping, what you want.” (dialogue between ejner and nurse, june 2016) ejner’s objection is that, as a state pensioner, he also has to think of his finances, and he cannot afford to buy fish twice per week. however, the nurse does not seem to recognise his small state pension as a real problem, but instead speaks of it as a choice. moreover, there is clearly a right choice, supported by many years of research. she cannot force him, but if he makes the wrong choice he risks getting ill again or getting a narrowing of the arteries in his heart, and he chooses himself when he’s out shopping. in this way, ejner’s decision seems illegitimate, as it challenges the recommendations for a heart-healthy diet. this episode demonstrates what can happen when healthcare professionals encounter patients who do not fit in with the pathway description’s notion of a patient that during phase ii makes the appropriate lifestyle changes. ejner basically just ends up being held accountable for his “choice.” the exchange does not lead to any real help or solution for him, nor any real recognition of his situation. this section has pointed out how the general narrative of progress in the pathway description assumes the decision to make lifestyle changes. this assumption organizes the actual interactions in the way that it directs focus to the question of which ones, while the decision to change lifestyle in the designated areas appears imperative. when the assumption is challenged, the patient is assigned with the responsibility for the recurrence of the disease. the ruling relations of individual consultations with healthcare professionals in the following, i will use the two examples of consultations above to discuss what makes the dialogues develop in this particular way. how can it be that the nurse responds to ejner’s objections by holding him accountable for his choices? why are patients faced with the recurrence of their disease, followed by death, if they do not follow the recommendations? these actions do not appear to originate from interpretations of the pathway description. as indicated, it does not operate with the concept of a non-compliant patient. during the fieldwork, one nurse called it a “dilemma” for clinicians when patients’ wishes run contrary to professional recommendations because it looks bad if we don’t get the patient to achieve our goals…. it’s difficult, because you’re trained so much in guidelines that you have to follow, and you’re kind of a bad nurse if you can’t get a patient to stop smoking (conversation with nurse, june 2016). on the one hand, healthcare professionals are asked by management to involve patients, but on the other hand, they must follow guidelines and instructions that give them tasks that do not necessarily harmonise with the ambition of patient involvement. previously, we saw how instructions constrained the dialogues between nurses and individual patients. in addition, the goals the nurse mentions above are institutional goals, which must be given priority in consultations with patients because the hospital’s performance is measured by these. the nurses i talked to said that these goals are satisfactory blood pressure and cholesterol levels, the correct amount of exercise according to the recommendations, and smoking cessation. in addition, part of the ward budget is withheld and only paid out if the set goals for blood-thinning treatment and screening for diabetes have been achieved. there are thus several “layers” of ruling relations, such as the limiting of topics in the instructions and the financial sanctions linked to certain mandatory elements in every dialogue. according to the nurses, this means more focus on what can be measured than on other things. as one of them stated, there are “many things to do, so it’s a bit easier to make sure the blood pressure is ok than ‘how can i actually involve this patient?’” (conversation with a nurse, june 2016). in ejner’s case, the subject of the interaction is diet. the instructions describe this as a risk factor, i.e. one of the subjects to be discussed with the patient (local instructions on cardiac rehabilitation individual, and cardiac rehabilitation nursing). the general instructions for patient interviews specify that i) patients must be “screened for health risks” by asking about their current lifestyle, and ii) the “health risks must be assessed” by comparing the screening result with the recommendations of the danish health authority and the patient’s illness, and iii) “if the patient has an unhealthy lifestyle, there must be an intervention” in the form of information about present and future health risks (local instruction on health risks identification and intervention). these instructions combined indicate an institutional [page 30] [qualitative research in medicine & healthcare 2021; 5:9489] article no nco mm er cia l u se on ly procedure in which certain actions (screen, assess, inform) must be performed by the institutional actor (here the nurse). it is also specified how these actions are to be performed: patients must be questioned, results must be compared with the recommendations, patients must be informed about risks, all of which is essentially what the nurses do in the dialogues above. the instructions thus clearly define and structure the nurse’s focus and actions as an institutional actor, and the standard of the recommendations becomes the framework for defining the patient’s problems. the instructions contain nothing that could support advice based on the patient’s actual situation; furthermore, the responsibility for assessing patient needs lies with the professional. this assessment takes the form of a standard procedure, which is also described in the instructions. for example, regarding diet, instructions state: “patients who, based on the health authority screening form for eating habits, have four negative responses, have very unhealthy eating habits and therefore need advice/an intervention.” regarding exercise: “patients who, based on the health authority screening form for physical activity in leisure time, place themselves in category 1, are at risk of developing illness due to lack of physical activity, and therefore need advice/an intervention.” (local instruction on health risks identification and intervention, emphasis added). the patient’s needs are thus defined externally to the patient and can be clarified and assessed by the clinician through the established institutional procedures. agency is textually constituted by means of the nominalizations advice and intervention. in the local actualities, these are actions: someone must advice and intervene. the text allocates agency to the healthcare professionals. patients, on the other hand, are assigned with needs, but not with the agency of making their own assessments of these needs. patients are thus textually constituted as passive entities, as objects of interventions in an institutional procedure that overrides their subjective experiences and perspectives. discussion and conclusions analysis presented above has provided insight into how patient involvement is shaped in local rehabilitation practices. here, patients are predominantly seen as recipients of knowledge, at a more general level in the group teaching and at an individual level in consultations. roughly speaking, one could say that the professionals’ task is to involve the patient in health knowledge. the requirement for healthcare professionals to be able to send patients on to phase iii with a clear conscience, as expressed by the doctor above, is that patients gain understanding and act in compliant ways. in this light, the doctor’s questions from the beginning of this article start to make sense. the 77-year-old woman has not understood the importance of exercise, despite the doctor’s attempts to explain it. she refuses to participate and can therefore not be involved in the knowledge that will give her a heart-healthy lifestyle. in line with other studies, the analysis has also shown that decisions on lifestyle changes are assumed and that patient preferences become illegitimate and conflictual when they deviate from health recommendations.15,17,31 part of the explanation is that the documents that structure the pathway (the textually mediated ruling relations) presuppose patients who are willing to make, and succeed in making, the recommended lifestyle changes. they presuppose that there are some lifestyle changes that the patient can maintain in phase iii of rehabilitation. furthermore, the dialogues are structured by the healthcare professionals’ instructions in ways that guide the professionals’ focus towards identifying knowledge gaps and risk factors which frame the definition of the patient’s problems. this focus shifts attention away from the patient’s perspectives and life situation, just as the instructions constrain the dialogue. the textually mediated ruling relations structure the agenda, actions and interactions, and consequently, patient involvement is shaped in ways that do not suggest more influence for the patient— such as influence on the agenda, topics to be discussed, and the patient’s own definitions of needs, problems or solutions. however, the clinicians’ statements also seem to contain other understandings of patient involvement than providing the patient with health knowledge. different professionals probably have diverse approaches to patient involvement; studies show a wide range of understandings of patient involvement within and across professional groups.26,32 the point, however, is that there is little in the institutional documents to support other approaches to patient involvement. the pathway description is the only document that explicitly mentions it, but this is done in nonspecific terms, without any clarification of the patient’s actual role or contribution. involvement of patients (if we understand involvement as not merely introducing patients to health knowledge) thus becomes a task for healthcare professionals to perform in addition to—perhaps even in spite of –guidelines, instructions and mandatory goals and based on their individual interpretations of what “involvement” means. furthermore, it will be up to the individual healthcare professional to find ways to eliminate contradictions in this situation, which the nurse called a “dilemma.” it is therefore by no means obvious how the involvement of specific patients in cardiac rehabilitation could take place. time, culture, and healthcare professionals’ attitudes to patient involvement, along with (un)willingness to relinquish control, power, and authority, are often highlighted as facilitators or barriers to patient involvement.26,31-35 the findings of the present article add institutional texts, in their structuring and authorisation of institutional procedures and tasks, as a significant factor in local practice. as the analysis shows, institutional texts structure healthcare professionals’ focus and actions as in[qualitative research in medicine & healthcare 2021; 5:9489] [page 31] article no nco mm er cia l u se on ly stitutional actors. for example, the professionals are to assess patient needs, and both what and how are described in the documents. it is thus not merely a question of willingness or unwillingness. asymmetry and authority are inscribed in the documents that guide practice, and healthcare professionals are held responsible for knowing and complying with these institutional texts. references 1. tritter jq. revolution or evolution: the challenges of conceptualizing patient and public involvement in a consumerist world. health expect 2009;12:275-87. 2. barnes m, cotterell p. from margin to mainstream. in: barnes m, cotterell p, eds. critical perspectives on user involvement. bristol: policy press; 2012: pp. xv-xxvi. 3. dent m, pahor m. patient involvement in europe: a comparative framework. j health organ manag 2015;29:546-55. 4. olejaz m, juul nielsen a, rudkjøbing a, et al. denmark: health system review. health syst transit 2012;14:1-192. 5. mead n, bower p. patient-centredness: a conceptual framework and review of the empirical literature. soc sci med 2000;51:1087-110. 6. fotaki m. towards developing new partnerships in public services: users as consumers, citizens, and/or co-producers in health and social care in england and sweden, pub admin 2011;89:933-55. 7. mockford c, staniszewska s, griffiths f, herron-marx s. the impact of patient and public involvement on uk nhs health care: a systematic review. int j qual health c 2012;24:28-38. 8. vrangbæk k. patient involvement in danish health care. j health organ manag 2015;29:611-24. 9. bochel c, bochel h, somerville p, worley c. marginalized or enabled voices? ‘user participation’ in policy and practice. soc policy society 2008;7:201-10. 10. pluut b. differences that matter: developing critical insights into discourses of patient-centeredness. med health care phil 2016;19:501-15. 11. barnes m, cotterell p. user involvement in services. in: barnes m, cotterell p, eds. critical perspectives on user involvement. bristol: policy press; 2012: pp. 73-77. 12. ortiz halabi i, scholtes b, voz b, et al. “patient participation” and related concepts: a scoping review on their dimensional composition. patient edu couns 2020;103:5-14. 13. askheim op, christensen k, fluge s, guldvik i. user participation in norwegian welfare context: an analysis of policy discourses. j soc policy 2017;46:583-601. 14. christensen k, pilling d. user participation policies in norway and england: the case of older people and social care. j soc policy 2019;48:43-61. 15. jacobsen cb, pedersen vh, albeck k. patientinddragelse mellem ideal og virkelighed: en empirisk undersøgelse af fælles beslutningstagning og dagligdagens møder mellem patient og behandler [patient involvement between ideal and reality: an empirical study of joint decision-making and everyday meetings between patient and therapist]. sundhedsstyrelsen, monitorering & medicinsk teknologivurdering and dansk sundhedsinstitut. medicinsk teknologivurdering – puljeprojekter 2008;8. 16. knudsen m, højlund h. grænser for inddragelse: en analyse af inddragelsesidealer og beslutningsprogrammer på genoptræningsområdet [limits of involvement: an analysis of involvement ideals and decision-making programmes in rehabilitation]. in: kjær p, reff a, eds. ledelse gennem patienten: nye styringsformer i sundhedsvæsenet [management via the patient: new forms of leadership in health care]. copenhagen: handelshøjskolens forlag; 2010: pp. 75-99. 17. hsieh e, bruscella j, zanin a, kramer e. ‘it’s not like you need to live 10 or 20 years’: challenges to patient-centered care in gynecologic oncologist-patient interactions. qual health res 2016;26:1191-202. 18. smith de. institutional ethnography: a sociology for people. lanham: altamira press. 2005. 19. smith de. texts and the ontology of organizations and institutions. studies cults orgs socs 2001;7:159-98. 20. zwisler ad, shou l, sørensen lv, eds. hjerterehabilitering: rationale, arbejdsmetode og erfaringer fra bispebjerg hospital [cardiac rehabilitation: rationale, working methods and experiences from bispebjerg hospital]. københavn: hjerterehabiliteringen, kardiologisk klinik y, h:s bispebjerg hospital; 2003. 21. danish health authority. hjerterehabilitering: en medicinsk teknologivurdering, evidens fra litteraturen og danrehabforsøget [cardiac rehabilitation: a medical technology evaluation, evidence from the literature and the danrehab trial]. medicinsk teknologivurdering – puljeprojekter 2006;6. available from: https://www.sst.dk/~/media/97bec54e347 646c6bafeb31426261575.ashx 22. janssen v, de gutht v, van exel h, maes s. a self-regulation lifestyle program for post-cardiac rehabilitation patients has long term effect on exercise adherence, j behav med 2014;37:308-21. 23. tolmie ep, lindsay gm, belcher pr. coronary artery bypass graft operation: patients’ experience of health and wellbeing over time, eur j cardiovasc nur 2006; 5: 228-36 24. rolley jx, thompson dr. cardiovascular disease: is it time to finally recognize it as a complex, chronic life-span illness? eur j cardiovasc nur 2012;11:135-37. 25. hansen tb. organisational, economic and patient perspectives on exercise-based cardiac rehabilitation following heart valve surgery. phd dissertation. sdu university of southern denmark. 2016. 26. knowledge centre for patient involvement (vibis): sundhedsprofessionelles forståelser af patientinddragelse – en kvalitativ undersøgelse [healthcare professionals’ understandings of patient involvement: a qualitative study]. 2013. https://danskepatienter.dk/files/media/publikationer%20-%20egne/b_vibis/a_rapporter%20og%20 unders%c3%b8gelser/sundhedsproffesionelles_forstaaels e_kvalitativ.pdf 27. kamp a, dybbroe b. struggles of professionalism and emotional labour in standardized mental health care. njwls 2016;6:67-86. 28. gripsrud bh, ramvi e, ribers b. couldn’t care less? a psychosocial analysis of contemporary cancer care policy as a case of borderline welfare, j psychosoc stud 2020;13:247–62. 29. danish health authority. pakkeforløb for ustabil angina pectoris (uap) og akut myokardieinfarkt uden st-elevation (nstemi) [patient care pathway for unstable angina pectoris (uap) and acute myocardial infarction without st elevation (nstemi)]. 2013. https://docplayer.dk/7268127-pakkeforloeb-for-ustabil-angina-pectoris-uap-og-akut-myokardieinfarkt.html [page 32] [qualitative research in medicine & healthcare 2021; 5:9489] article no nco mm er cia l u se on ly 30. danish health authority. national klinisk retningslinje for hjerterehabilitering 2013 [national clinical guideline for cardiac rehabilitation 2013]. 2015. https://www.sst.dk/da/sundhed/kvalitet-og-retningslinjer/nationale-kliniske-retningslinjer /udgivelser/~/media/401919781c684ee9aae544eb5e7684 7b.ashx 31. arnetz je, winblad u, arnetz bb, höglund at. physicians’ and nurses’ perceptions of patient involvement in myocardial infarction care. eur j cardiovasc nur 2008;7:113-20. 32. knowledge centre for patient involvement (vibis): læger og sygeplejerskers forståelse af patientinddragelse – en spørgeskemaundersøgelse blandt ansatte på hospitaler [doctors’ and nurses’ understandings of patient involvement: a questionnaire for hospital staff]. 2014. https://www.regioner. dk/media/10285/laeger-og-sygeplejerskers-forstaaelse-afpatientinddragelse.pdf 33. légaré f, ratté s, gravel k, graham id. barriers and facilitators to implementing shared decision-making in clinical practice: update of a systematic review of health professionals’ perceptions. patient educ couns 2008;73:526-35. 34. angel s, frederiksen kn. challenges in achieving patient participation: a review of how patient participation is addressed in empirical studies. int j nurs stud 2015;52: 1525-38. 35. jønsson ar, baker vh, jacobsen cb, pedersen lh. brugerinddragelse: forhandlinger af autoritet, relation og viden [user involvement: negotiating authority, relations and knowledge]. tidsskr forsk sygdom samf 2015;22:5-17. [qualitative research in medicine & healthcare 2021; 5:9489] [page 33] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2022; 6:10287] [page 19] introduction covid-19 was declared a global pandemic in march 2020 by the world health organization.1 in preparation for the first expected peak of the pandemic, the national health service (nhs) in the united kingdom mobilized emergency protocols to engage the surge in admissions. this resulted in many staff being redeployed to combat the developing pandemic and restrictions being placed on movement throughout hospitals. among these restrictions was a strict limitation for visiting patients admitted to hospital wards. this limitation was put in place to reduce the spread of the virus to both healthcare workers (hcws), inpatients, and the general public and to protect the available stock of personal protective equipment (ppe) and covid-19 diagnostic tests.2 pragmatic decisions were needed to ensure policies of social distancing and control of the virus. because transmission of covid-19 can tranevaluation of the family liaison officer role during the covid-19 pandemic luke hughes,1 lisa anderton,2 rachel m. taylor3 1cancer clinical trials unit, university college london hospitals nhs foundation trust; 2patient experience team, university college london hospitals nhs foundation trust; 3centre for nurse, midwife and allied health profession led research (cnmar), university college london hospitals nhs foundation trust, united kingdom abstract communication within healthcare settings is often a subject of contention for patients’ families at the best of times; however, contention was greatly magnified in the united kingdom by restrictions on hospital visitations during the early stage of the covid-19 pandemic. to support communication between families and patients, a central london hospital introduced the role of the family liaison officer (flo). this study was designed to evaluate the rapid implementation of the flo and to explore potential for it to become a standard role. semi-structured interviews were conducted with five flos and seven colleagues who had worked alongside them between april and june, 2020. two versions of the role emerged based on flos’ previous background: clinical (primarily nurses) and pastoral (primarily play specialists). the flo became a key role during the pandemic in facilitating communication between patients, clinical teams, and families. challenges associated with the role reflect the speed in which it was implemented. it was evident to those in the role, and clinicians who the role was supporting, that it had potential to help improve hospital communication and the work of healthcare staff beyond the pandemic. correspondence: rachel taylor, university college london hospitals nhs foundation trust, 1st floor east, 250 euston rd, london nw1 2pg united kingdom. tel.: +44.0.7967012909. e-mail: rtaylor13@nhs.net key words: covid-19; patient; family; communication; support; improvement. acknowledgements: we would like to thank our staff who took the time to participate in the study. contributions: all authors were involved in developing the protocol. lh and la co-ordinated the running of the study. lh was responsible for data acquisition. lh and rmt contributed to the analysis and drafted the manuscript. all authors critically revised and approved the final manuscript. funding: no funding was given for this evaluation. the hospital supported lh to conduct the study. rmt is funded through uclh charity and is a national institute for health research (nihr) senior nurse research leader. the views expressed in this article are those of the author and not necessarily those of uclh charity, nihr, or the department of health and social care. conflict of interest: the authors declare no conflict of interest. availability of data and materials: all data generated or analyzed during this study are included in this published article. ethics approval and consent to participate: this project was assessed as being service evaluation according to the toolkit published by the english health research authority (hra). as such, no formal research ethics approval was required. informed consent: written informed consent was obtained from a legally authorized representative(s) for anonymized patient information to be published in this article. preprint: an earlier version of this paper was made available as preprint before peer review as: hughes l, anderton l, taylor rm. evaluation of the family liaison officer (flo) role during the covid-19 pandemic. medrxiv 2021.05.18.21256801; doi: https://doi.org/10.1101/2021.05.18.21256801 conference presentation: this study was presented at the royal college of nursing (rcn) international nursing research conference 2021 on 9th september 2021 [virtual conference] received for publication: 16 november 2021. revision received: 13 may 2022. accepted for publication: 18 may 2022. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2022 licensee pagepress, italy qualitative research in medicine & healthcare 2022; 6:10287 doi:10.4081/qrmh.2022.10287 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. qualitative research in medicine & healthcare 2022; volume 6:10287 no nco mm er cia l u se on ly spire among asymptomatic patients, screening tools to moderate visitation often added to already stressful circumstances. while it was recognised that limiting visitors would add to anxiety already felt among patients and their families during this period, the global risk framework ultimately accepted the inherent uncontrollability of the situation as taking precedence.2-4 despite the pragmatism of visitation policies, restricting support from family or caregivers has serious implications—not just for the emotional and mental wellbeing of patients, but also their physical health.5 the incorporation of family members into a patient’s care has always been a complex issue in healthcare, as it requires a balance between the family’s need for information and access to their loved ones, on one hand, and medical teams’ often time-sensitive management of respective cases, on the other.6 indeed, family members often play key roles in supporting patients in areas where healthcare staff are less available, such as at mealtimes or during times of anxiety and distress.7,8 in particular, communication between the healthcare team and their patients’ families is a significant factor influencing patient experience and one which is frequently a source of contention and complaint.9 families frequently enter a space of liminality and powerlessness when a loved one is admitted to hospital and can feel further marginalized by the communicative approaches (or lack thereof) taken by healthcare staff.10,11 however, in recent years, a shift has been made towards both patientand family-centred care, focusing on communication and collaboration between patients, families, and the multidisciplinary team (mdt).12 emphasis is placed on the family as a crucial component for developing short-term and long-term care plans, with an emphasis on clear communication.5 adding further complexity to the difficult balance, covid-19 has deeply impacted communication between healthcare workers (hwcs) and patients’ families. in the early stages of the pandemic, with so much uncertainty abounding, hospital communication necessarily became focused primarily on the physical needs of patients, leaving families without knowledge of their loved ones’ emotional wellbeing in a time of great distress.13 due to the overwhelming nature of the first wave of the pandemic, family-centred care was not seen by some critics as a priority, despite it being an essential cornerstone of healthcare.13 at the same time, research (e.g., rose et al.) demonstrated that making a conscious effort to maintain communication with families during the pandemic was a necessary, protective factor for both patient and staff wellbeing.14 in particular, it was found that having tailored support for families from a designated staff member was of enormous benefit.15 an example of such tailored support is the family liaison officer (flo)—a role traditionally seen in police departments and school systems. the aim of the flo is to improve and mediate communication for service users and their families, building a bridge between families and professionals to create more fulfilling relationships.16 an adaption of this role was introduced at a central london hospital in the early stages of the first wave of the pandemic in march, 2020 to facilitate family and patient communication while restrictions were in place. it was created by the patient experience team within the hospital who sought to counterbalance the impact of visitor restrictions for inpatient care during a time of heightened stress. flos were assigned to in-patient wards caring for patients presenting with acute covid-19 infections to help maintain contact between patients and their families, while also supporting families with updates in a variety of forms. the aim of this study was to evaluate this new flo role in light of emerging studies suggesting potential for a role like the flo to become embedded in standard practice outside of pandemic protocols;13-15 therefore, we asked the following questions: how well was the flo role functioning? should the flo role be incorporated into the workforce on a routine basis, and if so, how? because the flo was a new role established rapidly during the early months of the pandemic, it was important to understand what worked well, what did not work well, and how the role was experienced by individuals performing it and those who worked with them. materials and methods participants our initial goal was to recruit all nine staff members who had been redeployed to the flo role during first wave of the pandemic, along with a convenience sample of 10 hcws who had worked with them in the clinical area. one member of the research team emailed the flos and the hcws who had worked with the flos to invite them to take part in the study. of the original nine flos, five agreed to participate; three were nurses, and two were play specialist/youth workers. seven hcw colleagues agreed to take part: two medical consultants, three ward sisters, and a two-person, volunteer service/patient experience team. the age range for the flos who were interviewed was 20 to 40 years, while the age range for their colleagues was 30 to 45 years. the flos had mixed levels of experience working in healthcare, with some as little as a one year and others with over five years of experience in a healthcare setting. their colleagues tended to have over five years of experience working in the field. all of the flos who were interviewed were female as were the majority of staff ultimately redeployed to this role who were not interviewed. among the colleagues we spoke to, one of the consultants was male while the other was female, the ward sisters were all female, and the volunteer team members were also both female. the health research authority (hra) has the re[page 20] [qualitative research in medicine & healthcare 2022; 6:10287] article no nco mm er cia l u se on ly search ethics service as one of its core functions, and it determined the project was exempt from the need to obtain approval from an nhs research ethics committee.17 approval for the evaluation was nevertheless given by the hospital’s research governance manager. the purpose of the evaluation was explained to the participants through a video call, and then they were given the opportunity to ask questions. if they agreed to continue, they were asked to give a recorded consent. all participants were able to stop the interview at any time and were assured of anonymity and confidentiality. data collection semi-structured interviews were conducted through online video software. to avoid bias, data were collected by an evaluation team consisting of redeployed researchers from the cancer clinical trials department. the interview guide was developed by the evaluation team through open discussion with the patient experience team who managed the flo role during its inception and deployment. interviews were conducted by a member of the evaluation team with experience of qualitative interviews with hcws and a background in mental health to ensure that participant wellbeing was a priority during the interview. consent for the interviews to be recorded, for the use of quotations, and the use of an artificial intelligence (ai) transcription service (otter.ai) were all provided at the beginning of the interview. interviews were between 40 and 60 minutes. both flo interviews and their colleagues’ interviews encompassed seven key topics: the day-to-day running of the role, positive elements of the role, negative elements of the role, effects on wellbeing, efficacy of technology, the relevance and future of the role, and general reflections on the role. data analysis completed transcripts were anonymised by removing any identifiable information such as names, job titles, and ward locations. data were analysed using framework analysis developed by the national centre for social research (natcen) as a method for facilitating analysis by multiple researchers and to ensure rigour throughout the analytical process.18 the five-stage process began with familiarisation wherein the lead researcher gained a thorough knowledge of the contents of the transcripts by repeatedly reading the transcripts and listening to the recordings. the second and third stages consisted of identifying a thematic framework and indexing, i.e., deductively specifying codes and applying the codes to the transcripts. the initial framework was developed from the interview schedule to provide the main themes, followed by examination of the transcripts line-byline so that all relevant sub-themes were identified and tagged. other sub-themes emerged from subsequent transcripts so that the framework evolved until there were no new emerging themes or sub-themes. in the fourth analytic stage, we developed a grid chart for each main theme, entering key words, phrases, and/or quotes that related to the sub-themes along with respective reference line numbers from the transcripts. in the final stage, we mapped the range and nature of the experience, looking for associations and explanations (i.e., concordance and divergence in experience based on data recorded on the grid). flo and colleague interviews were analysed separately using the same framework, and their perspectives were synthesised at the point of interpretation. this enabled divergences in their perspectives to emerge. the framework was created by two researchers, with one performing the analysis of the matrix which was independently reviewed by a third for consistency. we established methodological rigour in our analysis by using a semi-structured guide for the interviews and by empowering participants to expand on their responses according to their personal experiences (applying beck’s concept of “credibility”).19 to ensure fittingness of the findings, the secondary analysis included a purposive sample of flos and colleagues who delivered the service or worked alongside them. to ensure the auditability of the findings, framework analysis was used, which enabled multiple researchers to review the coding to check for accuracy of the interpretation. results three key themes emerged from the interviews of both the flos and their colleagues: the role, the impact, and the future. the role the role theme had five subthemes: role interpretation, professional background, personal skills, role boundaries, and preparation. role interpretation two distinct perceptions of the flo emerged through the interview process, hinging on how the individual interpreted the role of the flo and usually based on the respective flo’s previous professional background. for the purpose of identification, we will refer to these groups as the “clinical flo” and the “pastoral flo.” clinical flos were redeployed from healthcare roles (i.e., clinical nurse specialists and research nurses) and put emphasis on liaising with patients’ families, providing medical updates, and acting as a conduit between the medical team and the family unit. clinical flos tended to be based on the higher needs wards such as the high dependency or intensive care step down units. these flos took a medical team approach to the role, attending ward rounds and liaising with the ward team. they helped to support patients communicating with their families, be it helping set up video/tele [qualitative research in medicine & healthcare 2022; 6:10287] [page 21] article no nco mm er cia l u se on ly phone calls or through more interactive support based on patients’ needs. as one clinical flo described her role: i’m going on the ward round with them, knowing exactly what was going on with the patient and then sort of dividing up the work for who needs to be contacted by a doctor and who could be contacted by the family liaison officer. whereas i know some of the other flos did it differently on different wards. of the five flo participants in this study, three were clinical flos. clinical flos helped with supplying provisions and comforts to patients—e.g., specific food items—though some did report that they were unsure if this was a part of their role. the clinical flo role, in general, was performed differently on each ward, so there was a degree of variance in their approaches; some clinical flos were more involved in the medical updating of families and dealing with the communication for end of life (eol) patients or discharge, with others being more focused on patient support. clinical flos and their colleagues noted that having the time to talk through detailed patient care plans in more accessible ways led to patients feeling more involved and aware of their own treatment. it was felt that this level of detail and time spent with patients was not easily afforded to ward teams in normal practice, as a flo colleague explained: i think if that role had been given to […] a lower banded role that had less nursing or medical knowledge […] i’m not sure it would have been as effective. i think the fact that it was a senior nurse that knew what she was talking about […] had that kind of background knowledge. in contrast, the two pastoral flos among the participants came from a non-clinical background (play specialism and youth work) and tended to focus more on holistic and pastoral patient care (e.g., decorating a patient’s room). they tended to liaise with families, but did not provide medical updates—not feeling confident or best placed to do so. however, they did provide daily social updates in terms of patients’ wellbeing and comfort and updated families on how they were spending their time. the pastoral flos put emphasis on keeping patients engaged, comfortable, and stimulated during their admission. these flos spoke mostly of spending time with patients by the bedside to help mitigate loneliness and boredom and providing elements of pastoral care, for example: we would […] do newspaper round, then we’d do a little tea round and […] see who wanted to speak to their families […] sitting with them, helping them if they needed help eating their lunch, because a lot of them did need help with that. and then in the afternoon, we tried […] to do at least one, like, focused activity a day. so whether that was […] bingo […] a ward quiz […] painting […] making stuff for their grandkids […] we tried to sort of do one activity a day, so they had something to focus on in the afternoon. in some ways it appeared that the clinical flo may have been more focused on the families and communication element of the role, while the pastoral flos were more concerned with the patient’s experience. this may have been influenced by their previous roles. regardless of background, all of the flos played key roles in building relationships with patients and families—roles that were viewed as crucial and useful by the ward staff. likewise, flos of either background took on important roles in supporting communication with families—including eol patients—and advocating for the needs of their patients. the colleagues of the flos all found the role very useful and complementary to their ward teams. in particular, colleagues of clinical flos found that having a consistent touch point for family communication was time efficient for both the families and the ward team alike, for example: it was very good for time efficiency […] to actually spend time phoning each family member […] was really quite time consuming, big time efficiency saver for us as doctors. so on a practical level that was really important for us. another flo colleague concurred: having that insight from the flos was really valuable. they would pick up on all sorts of things that, you know, we just wouldn’t either get from the patients because they don’t feel it’s relevant to tell the medical team about a certain kind of social situation or something […][w]e found out a lot more about their home situations. similarly, having a member of staff with insight into patients’ individual home lives was useful for care planning and discharge; this advantage was reported by colleagues of the pastoral flos as well. although flos did not handle medical updates, their colleagues found social updates for families very helpful in easing anxieties and that engagement of patients throughout the day had a positive effect on patient morale and, subsequently, on the morale of the ward staff. professional background backgrounds of clinical flos were viewed as essential for understanding patient care, helping patients understand their own treatment plans, and being able to give [page 22] [qualitative research in medicine & healthcare 2022; 6:10287] article no nco mm er cia l u se on ly meaningful updates to families. clinical flos felt not having this background would make the role difficult. flos who were originally senior nurses felt that even nurses who did not have as much medical experience were likely to struggle. in particular, it seemed having a background in the ward speciality was key; a flo placed in a surgical ward with a surgical background, for example, felt it would be difficult to work there without insight into the minutia of the ward’s functions. as one clinical flo explained, “i felt like if i hadn’t had those experiences, it would have been very difficult to explain to patients what was happening.” another clinical flo agreed: a flo who did not have any medical background […] expressed it was difficult for her [pastoral flo] to get into the medical side of things, so she didn’t have that understanding. so she was asking us, you know, so what does that mean [...] she was […] struggling a little bit. this difference reflected the clinical flos’ interpretation of the role being based on providing medical updates to families, in contrast to the pastoral flos who approached the role from a different perspective. further evidence of this interpretation could be seen in one clinical flo’s experience when their ward reverted from a covid-19 ward to its original medical department, which she had little experience with. without much knowledge in this area, the flo struggled with how to support families—a contrast to the pastoral flos who focused solely on more personal, day-to-day updates. it was also noted by the clinical flos that having some level of seniority within the hospital was useful. key professional skills that clinical flos felt were useful included risk assessment and accountability and awareness of how to communicate appropriately with families, e.g., knowledge about how to communicate concerns of patients and families within the correct channels: “it was quite difficult to have the conversations because i didn’t really know what the tests were, things i hadn’t heard of before,” as one clinical flo put it. another explained: from my experience, and i think as a nurse, you know, everything you do, you’re accountable for. you would risk assess it. if someone asked for something and you think “oh, actually, this wouldn’t be right to do this to this patient.” […] [y]ou’d have to know how to escalate them properly. i suppose as a nurse, you know all of these things. on the other hand, pastoral flos did not feel confident about giving medical updates to families. instead, these flos brought their skills of engaging patients to the role, providing holistic and pastoral care, helping with meals, sitting with patients to give them company and emotional support, and trying to keep patients engaged by having daily activities to prevent boredom and loneliness. these flos seemed best-placed for care of the elderly as opposed to be being placed on the more intense medical wards such as the high dependency unit or surgical wards. their background in play and youth engagement, for example, was shown to have a high level of transferability to working with patients experiencing dementia or delirium. colleagues of clinical flos agreed that a medical background was an essential element of the role and that a level of seniority within the hospital was desirable. it was noted that similar roles had been unsuccessfully attempted before using less qualified and less experienced staff. most agreed that while a nursing background was not always necessary, having some clinical knowledge would be important if the role was to be implemented as standard. this was felt to be a critical skill enabling the flo to understand patients’ circumstances and health status, to give meaningful updates to families, to help patients better understand their treatment plans, and to have an awareness of what level of detail was appropriate to communicate to the family. on the other hand, colleagues also valued expertise brought to the role by pastoral flos. for example, some colleagues said that it was important for flos to have some experience with emotional support. colleagues of pastoral flos also felt that the role highlighted a missing element of geriatric care; specifically, they did not feel that giving medical updates to families was as essential as providing social updates for this client base who tend to be in hospital more long-term, with less immediate risks. personal skills important personal skills for a flo were unanimously agreed upon by clinical flos, pastoral flos, and their colleagues. it was agreed that being a good communicator was essential, particularly knowing when to speak and when to listen. being a caring, compassionate, empathetic, flexible, and a dynamic person were also attributes that were noted to be important. as one colleague put it, the role needed: “innate kindness, some patience […] understanding and kind of just being empathetic.” another colleague spoke about skills required in tense situations: “good negotiating skills, because we do get relatives who are very angry about not being allowed in to visit. and we have had situations particularly out of hours, where it’s been really uncomfortable.” similarly, some flos (both clinical and pastoral) as well as their colleagues, noted that having skills in conflict resolution and de-escalation were very important, as they were often dealing with very distressed family members, particularly regarding adherence to visitor policies. resilience was also noted as a key skill, given the emotional nature of working with critically ill patients who were frequently distressed, isolated, and anxious. [qualitative research in medicine & healthcare 2022; 6:10287] [page 23] article no nco mm er cia l u se on ly role boundaries flos appeared to struggle initially with their role, as there were no clear boundaries, duties, or line management for them on the wards. many felt they had been given little preparation before being thrust into the role. a clinical flo noted that “there wasn’t a lot of organization; it was just sort of […] thrown into it to see what we could do,” and another said: they don’t know actually what your role is. they think you’re looking after the patients. so instead of the nurses looking after the patient and us being present, we had to explain that over and over. i felt like every time i had to explain what my role was, what i was doing here. many of the wards were made of teams comprised of newly deployed staff who were unfamiliar with their coworkers or the clinical setting, and with no induction, introduction, or clarity of responsibilities, flos found it difficult to establish themselves. some noted that other staff would frequently ask them to carry out tasks that were not outside their professional remit, but were outside the parameters of the flo role (e.g., those with nursing backgrounds being asked to check control drugs). setting professional boundaries seemed to be an individual task—meaning that some flos carried out some activities that others did not—which could potentially have resulted in inconsistent care. many described feeling distant from the rest of the ward team and not knowing where exactly they fit. the lack of a clear line of duty for the role also meant that some flos were unsure if their duty of care was primarily with the families or with the patients; although they all eventually began to focus on both the patients and their families, this expectation was unclear in the initial stages of their deployment. this ambiguity could be stressful for the flos in a time that was already generally difficult for many staff “[e]specially at the beginning to see how each other were doing it because none of us really knew what we were doing. and there was no job, no real job plan,” as one clinical flo explained. some flos mentioned conflict with management who they felt were taking a hard line on visitation policies, recounting how they advocated for their patients. a clear benefit for these flos was meeting with other flos to discuss their roles, allowing them to develop their skills and methods as a group. flo colleagues noted boundaries were not always clear for them either. in particular, they did not know to what extent a flo should be expected to communicate medical information to families, such as breaking bad news. the majority of ward-based colleagues felt this was something that was the responsibility of the doctors. overall, most medical staff believed that the more serious medical updates should come from the medical team and not the flo, but that a certain level of routine medical updates on patients’ status was much appreciated by families and could be effectively provided by the flo. one colleague described the ambiguity inherent in the, as yet, unclear communication protocol: “it is good for efficiency for the doctors, but at the same time, i’m not sure it can completely replace the primary medical team communicating with the family, especially around the more difficult and complex decisions.” ethical boundaries for communication were also discussed by both flos and their colleagues. for example, there were no guidelines on how to react in some situations regarding privacy for eol patients who were communicating with family members online who, in turn, were bringing other family members to join the call without the patients’ consent. likewise, clarity was needed on what the safeguarding for both staff and patients would be in scenarios where families wanted to speak with a patient, but the patient did not want to speak with the family. to protect the rights of all parties involved, some guidelines on this would need to be introduced. preparation no training or preparation was provided prior to being redeployed into the flo role. some of the flos felt that there would have been no time, while others wished they could have been prepared more. two of the three clinical flos felt that in the future non-clinical staff could be given enough training to help them understand the basic clinical knowledge to provide similar support; however all three agreed they would not be able to be trained to the degree of knowledge clinical staff would have. in general, flos felt very unprepared for their redeployment and were given little to no time to prepare for the role before it began, as a clinical flo explained: it was very chaotic at the start, so it was very quick to happen. so it was sort of […] i got a phone call, i think on the, it was like monday or tuesday, and then the role started two days later. so it was very quick. overall, redeployment was a stressful and chaotic time for everyone. flos struggled with not having a timeframe to know how long they would be redeployed for, and when the role ended, there was no clear transition back into their previous roles which was equally difficult. a clinical flo, for example, said: i think the uncertainty of being redeployed like that, that was a really strange feeling and not knowing when i’d go back to my other job and how long redeployment would last so it’s quite, there was quite a lot of feelings. for their part, ward colleagues agreed that they had little preparation to receive the flos on the ward without a spe[page 24] [qualitative research in medicine & healthcare 2022; 6:10287] article no nco mm er cia l u se on ly cific brief or formal induction of the role. this caused some initial confusion, and it was felt that more structure for the role was needed for them to know how best to lean upon the flos and utilize them to their capacity. for example, one colleague noted that they were unsure how much they needed to communicate with the flo throughout the day, and this caused some miscommunication of tasks. while all the interviewed colleagues felt the role had been a success, they also agreed that for the sake of both the ward team and the flos, a formal induction to the role would be necessary next time. as one colleague put it: when they arrived on the ward, we couldn’t really tell them exactly what we wanted because we weren’t sure ourselves. but they managed to work out and do some trial and error and work out the best way to do things. the impact the theme of impact had two subthemes: staff wellbeing and patient and family experiences. staff wellbeing the onset of covid-19 was a stressful time for everyone: a wave of adrenaline proceeded widespread emotional exhaustion. flos struggled with the liminal space of their redeployment and not having any clear plan about when they would return to their old roles. some flos felt isolated and would have preferred more clinical supervision. the work with covid-19 patients was described as being particularly draining as the unknown nature of the virus and the critical level of sickness that affected some patients meant that many patients experienced a turbulent medical journey. the nature of the flo role meant that staff became quite close to patients and their families so that they inevitably were taken along patients’ journeys as well. flos from both clinical and nonclinical backgrounds were no strangers to complex medical journeys or eol patients; however, the mercurial nature of covid-19 saw patients vacillating between extremes of health, which had a notable impact on the staff, as a clinical flo reported: when they were discharged, i felt really emotional, which i was quite confused about how that felt. i thought i should feel really happy. but i think it was just, you know, you’ve seen people really sick, and then they bounce back, and you do have that really close contact with the family. so you feel for them, you feel empathy. elements of burnout were noted among interviews with flos, particularly with regard to patients and families experiencing extremes of undulating health during their admission. some flos found support more useful in their own teams, while others did not feel comfortable in group psychology sessions with their team or attending sessions from home due to their family being present. clinical flos often found support among other flos. pastoral flos, on the other hand, were largely contained within their own team, which had pre-existing support sessions, and they frequently engaged in these on the ward. fears over transmitting the virus to family members were also a cause for concern. some flos noted that during the initial stages of the pandemic when it was “all hands-on deck,” there was no room for seeking psychological support, but when numbers of patients reduced considerably, staff felt stranded in an uncertain space waiting to be deployed back to their original roles. this was the time when they experienced more complicated emotions, as described by a clinical flo: the thing that caused me the most stress was not knowing how long i’d be redeployed for […] and like knowing at any stage, because i remember being really anxious before i was redeployed, and then i was for about two weeks i felt ok […] then i thought, oh, gosh, this is gonna happen again, because i need to get back to my old job […] that’s more about redeployment than the flo role to be honest. flos’ colleagues also agreed that the pandemic had been an arduous and exhausting period and that flos had the added emotional burden of dealing with distressed family members. they also felt most support had been internal within their teams. some colleagues felt that the role of the flo took on some of the extra burden of emotionally supporting patients, which facilitated time for the ward team to be more engaged in time-sensitive care. other colleagues maintained that even with the presence of the flo, it was inevitable that they, too, would take on the emotional burdens of patients. patient and family experiences all flos discussed supporting their patients in a variety of ways. as discussed, the clinical flos tended to focus first on the medical communication aspect for families and then on patient support, while the pastoral flos focused primarily on direct patient support (i.e., sitting and speaking with patients, providing them with entertainment) and providing day to day updates to family on their wellbeing. all the flos noted the number of fatalities were difficult for them to deal with, as they were more emotionally involved with their patients in this role. family visitation was a particularly troubling issue for flos and patients alike. while visitors were not allowed in the hospital, changes were made to the rules for patients who were receiving eol care. this was something some of the flos were instrumental in advocating, as they were acutely aware of patients’ and families’ enhanced psychological and emotional needs at the time. speaking of the [qualitative research in medicine & healthcare 2022; 6:10287] [page 25] article no nco mm er cia l u se on ly pastoral flos, a colleague working in elderly medicine noted: i suppose it was applying what they normally do in paediatrics to geriatric care for the purposes really, and keeping people cognitively stimulated. patients were happier, and staff were happier as a result. all flos noted the difference even small comforts could bring to patients’ experience of hospital care and felt that the role generated many experiences of meaningful work. flos’ colleagues found this facet of the role invaluable for patient-centric care, and having a role specifically mandated for giving patients the time and care that the ward staff simply did not have time for was seen as hugely beneficial for patients, families, and staff. furthermore, colleagues reported that flos built up good rapport with patients and that they were an essential point of insight into patient’s individual circumstances, nuances, and needs, for example: dealing with difficult […] distressed patients dealing with distressed relatives, and you know, some relatives’ expectations are one call a day, one call a week. some relatives […] we have them queuing outside the hospital waiting […] their level of anxiety was, you know, off the scale. in terms of family support, flos perceived that the onset of covid-19 was an extremely distressing time for families of patients due to both the risk of death from the virus and strict rules about visitation. flos felt that anxiety was particularly high if they were not stationed on the ward over the weekends, causing families to wait for extended periods without substantial updates. flos were instrumental in helping families communicate with patients throughout this period, particularly so for eol patients. flos reflected that staff often promised to return to speak to them, but often became busy. as a result, the patient and family were left with unresolved anxiety and stress. flos were important for bridging this gap in care. the role gave families structure for when and how they would be contacted and a person they could contact when needed, as a flo’s colleague reported: the biggest frustration of relatives certainly at the moment is the nurses change each day, because they’re all doing shifts, so they don’t get to speak to the same nurse twice. and the nurse in-charge phone, which is currently their only contact with the ward, is used as kind of as a clinical liaison phone, so has multiple people trying to get through at all times, and relatives can’t get through. whereas there was a dedicated phone that the flos had. the relatives knew […] they would get to speak to someone who knew their patient. families differed in how much contact and updates they wanted, and flos were able to identify and cater to these needs. in particular, pastoral flos provided social updates to families that were also useful for easing anxieties, helping families to see patients were comfortable and even in some cases, enjoying their experiences on the ward. the future all of the staff redeployed to the flo role felt it was an important role and should be continued where possible. consistency of care was identified as a clear benefit by having the same staff based on the same ward to help build rapport and trust with patients, family, and clinical staff. many experienced deeply meaningful moments in their role, including making significant connections with families and patients. for example, a pastoral flo described the powerful experience of working with an elderly patient who thrived in the care of the paediatric team: [t]hey had a patient that they said was palliative […] they took him off end of life […] once we started spending time with him daily, like we’d spent a good couple of hours, keeping him busy, like doing his hair in the morning, like getting him back into a routine. he left the ward six weeks after […][h]e said that they should rename the ward a holiday camp […][h]e thought it was really great. similarly, flo colleagues felt the role was valuable, agreeing that having a consistent member of staff was useful for families to contact and build a relationship, especially among the most at-risk populations. as one colleague put it, “if you’ve got a patient population that’s very vulnerable and very complex, and fairly elderly […] those kind of wards is where they’ll be very valuable.” typical routines of ward staff within a hospital can conflict with interests of families, such as repeatedly changing the roster of nurses, which can be frustrating for families. again, consistency is crucial. indeed, when flos returned to their original roles, ward staff struggled to keep up with the demand of the communication needs of families. as one colleague said, “we’re finding increasingly that the communication with families is really difficult at the moment when visiting isn’t back up [permitted]. i think actually the role itself was so good.” clinical staff who work primarily in adult medicine were particularly impressed with the system of care provided in paediatrics and how this could be transferrable to other areas of the hospital—particularly elderly care, given the depth of research about how keeping patients stimulated via music or art or other activities can be beneficial. one colleague, for instance, praised flos by saying, “i feel like it was like revolutionary geriatric care.” all flos agreed that the role had a definite place in [page 26] [qualitative research in medicine & healthcare 2022; 6:10287] article no nco mm er cia l u se on ly the future of hospital care, but it needed proper formalisation and induction for the ward staff and consultants. training was recommended for flos without a clinical background to support them in engaging with low tier clinical updates. alternatively, the role could be separated into different roles: one that focused on medical updates and another that could focus on patient support. discussion interviews with flos and their colleagues indicated that the role of the flo was valued by healthcare professionals working in frontline covid-19 areas where there were restrictions to visitors. early in the covid-19 pandemic, healthcare teams were unable to provide the level of communication required by affected families, so the flo role was implemented to ensure channels of communication were in place to prevent family distress and dissatisfaction. the new role was also to support clinical staff in reducing the moral distress of delivering patient care when direct links to families was necessarily limited. the role was implemented rapidly, with no policy in place so that nurses and youth worker/play specialists who acted as flos were initially unclear of their role; similarly, healthcare teams were unsure of what the flos’ responsibilities were. however, over time, as flos became embedded within the team, the benefit for acting as a conduit for information between the healthcare team and the family, on one hand, and a link between patient and family, on the other, became evident. an unexpected finding was the added benefits that those without a medical background brought to the role, providing stimulation to patients who would have otherwise been left to provide their own divertissement. it is particularly worth noting that flos relied heavily on each other as a support network to manage the uncertainty of their new role. this reflects aspects of brasher’s uncertainty management theory,20 in which individuals develop strategies for emotional responses to ambivalent situations. this is a positive sign, as staff members were able to come together for social support in the face of difficult and trying circumstances, mostly of their own accord. a less positive outcome was that both clinical flos and pastoral flos were not integrated well by their management; moving forward, it would be necessary to make sure all staff working as flos are connected to the whole team in order to avoid flos feeling isolated or marginalized. this would have diminished responsibility of the flos developing and establishing the role themselves while simultaneously performing it and dealing with the difficulties inherent to redeployment. besides becoming smoothly assimilated into the healthcare team, flos should be prepared to deal with extreme stress associated with the role. folkman and greer’s framework for coping with illness21 provides useful suggestions for maintaining psychological wellbeing in roles such as the flo, especially during healthcare crises. this framework posits that feelings of distress and upset are common human experiences in the face of adversity, and rather than seek to remove them, it allows the individual to accept that these emotions are not signs of weakness. the framework focuses on maintenance of positive attitudes towards difficult tasks and finding a sense of purpose. we can see this reflected already in how flos approached their work—work that was emotionally distressing, but ultimately meaningful and rewarding—thus functioning as a protective and motivating factor. this form of resilience could be further developed in formal flo training. overall, the flo role was shown to be valuable during the early stage of the covid-19 pandemic. much evidence has shown that effective communication is an essential element of family-centred care and that families’ involvement in care is essential for ensuring care meets patients’ needs.13 this was recognised as a challenge during the pandemic as most healthcare organisations or government policies required visitation reduction or suspension.22-25 limitations the current study has a number of limitations. first, we were only able to engage five of the nine members of staff who had been in the flo role in a single setting. the four flos who were not represented may have not agreed to participate because they had a different perspective of the role that they were not willing to share, so we could potentially have a biased view of the role. similarly, we were only able to interview seven colleagues who worked alongside the flos, so there could be other viewpoints not captured in these data. second, this evaluation focused on the flos who were based on wards impacted by covid-19, not in the critical care or emergency departments. these other departments had their own internal systems akin to the flo, and they conducted their own evaluation specific to their own services. a comparison between these services and the flos found in this evaluation and in other settings would therefore be of interest for future work. finally, the benefit to patients and families is from the professional perspective, which does not necessarily reflect the experiences of patients or families. in order to fully understand the value of the flo role, exploration from the perspective of patients and families is therefore something recommended for future research. despite these limitations, this evaluation illustrates significant benefits in providing a dedicated role to maintain and improve communication between healthcare teams and families during a healthcare crisis. while this is a single centre evaluation, other organisations may recognise similar experiences and so will be able to apply knowledge gained to their practices if they see the dayto-day value in the role. [qualitative research in medicine & healthcare 2022; 6:10287] [page 27] article no nco mm er cia l u se on ly conclusions the flo role was introduced into clinical practice out of necessity. results of this study strongly suggest that the role should be a staple of pandemic protocols. furthermore, there is compelling evidence for the flo to be a standard role within the nhs and not just during an emergency. similar studies have found similar outcomes, particularly in reference to having fixed staff members to carry out the flo role.14-16 similar studies also endorse the use of more widespread communication training for hcws, as previous findings have shown that many nurses find it more difficult to integrate psychosocial care into their interactions with patients and often default to communication styles which are more centred on physical health rather than a more holistic perspective of patient wellbeing. this is an area hcw often feel more prepared, knowledgeable, and comfortable speaking about.26 this was replicated to some degree by the experiences of the clinical flos compared to the pastoral flos in terms of how they both interpreted and approached the role. this research shows that there is potential for both roles to inform one another moving forward. epilogue this report was written based on the early development of the flo role at the beginning of the covid-19 pandemic in march 2020. the role of the flo has evolved throughout the pandemic in relation to the data provided in this initial report and the changing needs of services. in its initial inception, the flo role was carried out by redeployed staff; this is no longer the case. with redeployed staff recalled to their original positions, the role was taken on by volunteers. in line with our evaluation, the role was revised to make sure that all new flos had clear responsibilities, an induction to ward teams, competent and frequent training sessions, and a clear emphasis on a network of peer support between the volunteers and their central coordinators. the flo was again requested by many of the wards who had a flo assigned to them in the early stages of the pandemic, including elderly care and higher dependency units. the role of the flo has become a hybrid of the clinical and pastoral flo roles described in this evaluation, with an emphasis on maintaining family contact during inpatient care and with most inpatient wards covered for a seven-day period. however, as the flos are now primarily volunteers with no background in clinical or medical care, they are no longer able to provide the medical updates to families that the clinical flos were able to provide, nor are they able to take the time to discuss patient care pathways in much detail. equally, the role is a considerable time commitment for volunteers, and given its sensitive nature, recruitment to the role has had to be quite selective. as time has progressed, rules around visitation have also changed in reaction to covid-19, and flos are now required to take on administrative tasks that were not initially a part of their role. there are some preliminary conclusions we can make from this trajectory. it is clear that the role is desired by the ward teams. many of the factors that made the role difficult and uncertain have been addressed, and it is also clear that the flo is recognized as a member of the wider multidisciplinary team. however, continuing the role as a purely voluntary position is likely to lead to its underutilization. the ability of the clinical flo to provide medical updates and to spend time explaining patient care pathways was a vital element of its success in its first incarnation. the structure and network of the flo has been established, but considering the patterns noted in this study, for the role to have longevity, it would merit consideration as a full-time occupation, rather than depending on volunteer altruism. there is evidence that the flo is desirable in healthcare13-15 and adapting this role outside of the pandemic could be a critical step toward improving communication with patients and families, increasing the opportunity for them to be involved in decisions about their care moving forward. it should no longer be a question of whether the flo role is useful, but rather how we can ensure the flo role remains useful. references 1. world health organisation. coronavirus disease (covid19) events as they happen. accessed on 8th march 2021. available from: https://www.who.int/emergencies/diseases/novel-coronavirus-2019/events-as-they-happen 2. hermann a, deligiannidis k, bergink v, et al. response to sars-covid-19-related visitor restrictions on labor and delivery wards in new york city. arch women’s mental health 2020;23:793-4. 3. virani a, puls h, mitsos r, et al. benefits and risks of visitor restrictions for hospitalized children during the covid pandemic. pediatrics 2020;146:e2020000786. 4. klompas m. coronavirus disease 2019 (covid-19): protecting hospitals from the invisible. ann internal med 2020;172:619-620. 5. boyle b. the critical role of family in patient experience. patient experience j 2015;2:4-6. 6. farrell m, joseph d, schwartz-barcott d. visiting hours in the icu: finding the balance among patient, visitor and staff needs. nursing forum 2005;40:18-28. 7. ottrey e, palermo c, huggins c, porter j. exploring staff perceptions and experiences of volunteers and visitors on the hospital ward at mealtimes using an ethnographic approach. j clinical nurs 2018;27:e1571-9. 8. mckenzie j, joy a. family intervention improves outcomes for patients with delirium: systematic review and metaanalysis. australas j ageing 2020;39:21-30. 9. newell s, jordan z. the patient experience of patient-centered communication with nurses in the hospital setting: a qualitative systematic review protocol. jbi database system rev implement rep 2015;13:76-87. [page 28] [qualitative research in medicine & healthcare 2022; 6:10287] article no nco mm er cia l u se on ly 10. desai ad, popalisky j, simon td. the effectiveness of family-centred transition processes from hospital settings to home: a review of the literature. hosp pediatr 2015;5:219–31. 11. underwood j. hospital visitors’ experiences at the nurses’ station. nursing standard 2017;31:44-53. 12. clay a, parsh b. patientand family-centered care: it’s not just for pediatrics anymore. ama j ethics 2016;18:40-4. 13. maaskant jm, jongerden ip, bik j, et al. strict isolation requires a different approach to the family of hospitalised patients with covid-19: a rapid qualitative study. int j nurs stud 2021;117:103858. 14. rose l, yu l, casey j, et al. communication and virtual visiting for families of patients in intensive care during the covid-19 pandemic: a uk national survey. ann am thorac soc 2021;18:1685-92. 15. klop ht, nasori m, klinge tw, et al. family support on intensive care units during the covid-19 pandemic: a qualitative evaluation study into experiences of relatives. bmc health serv res 2021;21:1060. 16. college of policing. 2022. family liaison officer (flo) college of policing. accessed 22 february 2022. available from: https://profdev.college.police.uk/professional-profile/ family-liaison-officer-flo/ 17. health research authority. is my study research? accessed on 8th march 2021. available from: http://www.hra-decisiontools.org.uk/research/ 18. ritchie j, spencer l. qualitative data analysis for applied policy research. in bryman a and burgess rg [eds.] analyzing qualitative data. 1994, pp.173-94. 19. beck ct. qualitative research: the evaluation of its credibility, fittingness and auditability. western j nursing res 1993;15:263-6 20. brashers de, neidig jl, haas sm, et al. communication in the management of uncertainty: the case of persons living with hiv or aids. commun monogr 2000;67:63-84. 21. folkman s, greer s. promoting psychological well-being in the face of serious illness: when theory, research and practice inform each other. psychooncology 2000;9:11-9. 22. heyland dk, barwich d, pichora d, et al. failure to engage hospitalized elderly patients and their families in advance care planning. jama intern med 2013;173:778–87. 23. gabbi s, man k, morgan g, maity s. the development of the family liaison team to improve communication between intensive care unit patients and their families during the covid-19 pandemic. arch dis child educ pract ed 2021;106:367-9. 24. negro a, mucci m, beccaria p. introducing the video call to facilitate the communication between health care providers and families of patients in the intensive care unit during covid-19 pandemia. intensive crit care nurs 2020;60:102893. 25. lipworth ad, collins ej, keitz sa, et al. development of a novel communication liaison program to support covid19 patients and their families. j pain symptom manag 2021;61:e1-0 26. van belle, e, giesen, j, conroy, t, et al. exploring personcentred fundamental nursing care in hospital wards: a multisite ethnography. j clin nurs 2020;29:1933– 44. [qualitative research in medicine & healthcare 2022; 6:10287] [page 29] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2017; 1:6925] [page 103] introduction in this paper, dr. castelloe meditates on long-standing frustrations originating from her personal experiences in clinical medicine.1 her exit from clinical medicine can most succinctly be attributed to burnout.2 act at your own pace, with decisiveness.3 time is a slippery, fickle thing: now fleeting, now interminable. sometimes, it washes over you in waves that defy notice or quantification. other times, a mere moment can be held up to the light and minutely examined before it finally flits away. this ever-changing nature of time is inextricable from my memories of clinical medicine: expansive fortyfour-hour shifts that seemed as though they would never end, contrasting with an endless stream of brief appointments, each over-and-done before i properly felt it begin. as a primary care physician in a large, multispecialty, group practice, i had no power – despite numerous attempts to wrest it from the administration – to change my patient appointment schedule or visit length. fifteenor thirty-minute appointments – with mandatory doublebooking – came with the job. i could not act at my natural pace. to do so, i needed more time to listen to each of my patients; think deeply about their questions and concerns; formulate a collaborative and cohesive plan of action; document that plan, perhaps honing it as i went; and pause briefly – to reflect, breathe, recharge – before repeating the process with another patient. instead, i worked at an unnatural, externally imposed pace, racing through and from visit to visit, day after day, week after week, month after month, year after year…until i could race no more. i left clinical medicine exhausted and overwhelmed by feelings of inadequacy; inadequacy that devolved into slow-burning shame; shame that whispered nagging questions; questions that continue to haunt me. why couldn’t i hack it? was i less resilient than other physicians? did i belong in clinical medicine in the first place? if so, what more could i have done to stay? over the years, as recognition of and concern about the prevalence of professional burnout increased, my questions evolved. was my burnout the product of a poor fit between me – all my innate and acquired strengths and challenges – and my career choice, or simply a poor fit between me and the healthcare system in which i worked? should i have changed practice settings before i turned away from clinical medicine? with these questions tincture of time erin nissen castelloe pharmaceutical medicine consultant, san diego, ca, usa abstract in this article (part two of a two-article piece), i, erin nissen castelloe, meditate on long-standing frustrations originating from my personal experiences in clinical medicine. my exit from clinical medicine can most succinctly be attributed to burnout, burnout triggered by inadequate time to address my patients’ needs and complete the tasks mandated by the healthcare delivery system in which i worked. selfand system-imposed pressures to meet my professional obligations led to chronic overwork, reduced personal time, sleep deprivation, exhaustion, and ultimately, recognition that my work situation was unsustainable. for more than ten years, i have questioned my decision to leave clinical medicine, hashing and rehashing the circumstances leading up to it. i am ready to let go of the questions that have haunted me, but i want to do so deliberately, considering them carefully before i release them. therefore, with high hopes – to understand my past, accept it, and move boldly into my future in medicine – i searched the literature, focusing on burnout in physicians and physicians-in-training; the role of time pressures in burnout; and the value of physicians spending adequate and high-quality time with patients. correspondence: erin nissen castelloe, 12594 kestrel street, san diego, ca 92129, us tel.: +1.858.354.6441. e-mail: erin@castelloe.org key words: burnout, therapeutic presence, visit length, time, patient-physician relations. conflict of interest: erin nissen castelloe works as a paid pharmaceutical medicine consultant to several drug-development companies; she does not own or accept stock (or stock options) from any drug-development company for which she works. acknowledgements: with humble thanks to the family, friends, and colleagues who reviewed drafts of this manuscript and the ideas therein. received for publication: 8 july 2017. accepted for publication: 8 july 2017. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright e.n. castelloe, 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:103-108 doi:10.4081/qrmh.2017.6925 qualitative research in medicine & healthcare 2017; volume 1:103-108 no nco mm er cia l time is a no nco mm er cia l time is a slippery, fickle thing: now fleeting, now interminable. no nco mm er cia l slippery, fickle thing: now fleeting, now interminable. sometimes, it washes over you in waves that defy notice no nco mm er cia l sometimes, it washes over you in waves that defy notice or quantification. other times, a mere moment can be held no nco mm er cia l or quantification. other times, a mere moment can be held four-hour shifts that seemed as though they would never no nco mm er cia l four-hour shifts that seemed as though they would neverend, contrasting with an endless stream of brief appointno nco mm er cia l end, contrasting with an endless stream of brief appointments, each over-and-done before i properly felt it begin. no nco mm er cia l ments, each over-and-done before i properly felt it begin. as a primary care physician in a large, multispecialty, no nco mm er cia l as a primary care physician in a large, multispecialty, no nco mm er cia l correspondence: erin nissen castelloe, 12594 kestrel street, san no nco mm er cia l correspondence: erin nissen castelloe, 12594 kestrel street, san no nco mm er cia l key words: burnout, therapeutic presence, visit length, time, pa-no nco mm er cia l key words: burnout, therapeutic presence, visit length, time, patient-physician relations. no nco mm er cia l tient-physician relations. us e up to the light and minutely examined before it finally flits us e up to the light and minutely examined before it finally flitsaway. this ever-changing nature of time is inextricable us e away. this ever-changing nature of time is inextricable from my memories of clinical medicine: expansive forty-us e from my memories of clinical medicine: expansive fortyfour-hour shifts that seemed as though they would neverus e four-hour shifts that seemed as though they would never on ly up to the light and minutely examined before it finally flitson ly up to the light and minutely examined before it finally flits to understand my past, accept it, and move boldly into my future in medicine – i searched the literature, focusing on burnout in physicians on ly to understand my past, accept it, and move boldly into my future in medicine – i searched the literature, focusing on burnout in physicians and physicians-in-training; the role of time pressures in burnout; and the value of physicians spending adequate and high-quality time on ly and physicians-in-training; the role of time pressures in burnout; and the value of physicians spending adequate and high-quality time on ly in mind and high hopes – to understand my past, accept it, and move decisively into my future in medicine – i reviewed the literature. i began with broad questions. why do physicians burn out? do physicians recover from burnout? what aids burnout recovery? then, i narrowed my focus toward topics relevant to my professional experiences. what is the role of time pressure in physician burnout? would lifting time pressure prevent burnout and/or aid in burnout recovery? what are the benefits of lifting time pressure for physicians? for patients? from january to july 2017, i formally searched multiple repositories of lay and academic literature (e.g., online newspapers, news magazines, physician blog posts and/or web sites, newsletters from physician organizations, books, medline4/ pubmed,5 google scholar,6 a special collection published by nejm catalyst,7-10 medscape11) for content related to burnout (in physicians or physicians-in-training); the therapeutic nature of a physician’s presence (independent of other treatment modalities); and the relationship between visit length (i.e., the amount of time that a physician spends with a patient during a discreet visit) and burnout, and/or the physician-patient relationship. my search of the burgeoning burnout literature was extensive (table 1), and i identified publications that generally mention the issue of time pressures in clinical medicine, listing long duty hours, chaotic work environments, lack of physician control over their schedules, and extensive administrative tasks that deprive physicians of necessary time with patients as factors impacting burnout.12 yet, i was unable to identify a single publication that focused primarily on the role of time pressures in burnout. initially, it seemed that my search had been fruitless; this detailed process had not revealed clear or simple answers to the questions that haunted me when i began. however, by interweaving resonant passages with my reflections on burnout, i have achieved new insights and refined my goals. on may 6th, 2017, i conducted a pubmed13 search for the medical subject heading (mesh) of “burnout, professional” and identified 5,407 english-language articles, 1,445 of which had been published in the last five years. i reviewed more than 500 of these 1,445 article titles and/or abstracts to distinguish studies which investigated physicians or physicians-in-training from those which investigated other professionals. next, i created a list of more than fifty study factors – hypothesized to be correlated (positively or negatively) with, impacted by, causes of, and/or interventions for burnout in physicians or physicians-intraining – and sorted the list into four broad categories; the categorized study factors are presented in table 1. whatever inspiration is, it’s born from a continuous i don’t know. (wislawa szymborska)13,14 time is of the essence in healthcare; but what is the essence of time in healthcare? in a medical emergency, rapid-fire assessments and treatments by front-line providers save countless lives and limbs. to those who regard medicine as big business,15,16 both the time it takes a physician to provide a service and the complexity of that service have a relative value unit (rvu);17 meaning, the more quickly a physician can perform a procedure and the more complicated each procedure, the more valuable that physician is to the organization. others assert that time has ethical significance, with specific implications for the patient-physician relationship, for respect of patient autonomy, for promotion of well-being...18 for me, the most precious part of my job as a family physician was the time i spent with each patient; that is where it all came together, where i found myself in flow,19,20 in harmony with the machinations of my mind and my patient. dr. danielle ofri21 states: a substantial portion of healing comes from the communication and connection with the patient…the simple conversation between doctor and patient can be as potent an analgesic as many treatments we prescribe…yet the conversation between doctors and patients is one of the least valued aspects of medical care. insurance reimbursements for tests and medical procedures dwarf reimbursements for talking to patients or spending time thinking about what ails them.22 [page 104] [qualitative research in medicine & healthcare 2017; 1:6925] article table 1. recent research topics in physician burnout. physician characteristics a sense of calling, altruism, work passion, professionalism and/or professional commitment, perfectionism, gender, resilience, wellness or well-being, emotional intelligence, genetic factors, temperament and character, achievement goal motivation orientations, self-esteem, self-efficacy. sources of physician stress and/or burnout medical culture, stigma associated with help-seeking, administrative burdens, electronic health records, environmental influences, perceived quality of care, patient safety, the physical and psychological demands of medical practice, inadequate sleep, inadequate exercise, interprofessional relations, job dissatisfaction, duty hours, workload, chronic overwork, trauma, patient characteristics, stereotypes. sequelae of physician stress and/or burnout alcohol use, emotional pain, loneliness, depression and/or depression treatments, altered brain activity on neuroimaging, suicide, medical errors, shame, blame. protections against and/or interventions for burnout mentoring, mindfulness and/or mindfulness-based stress reduction, meditation, social support, coping strategies. reflective professional supervision, computeror phone-based applications (apps), work-life balance. no nco mm er cia l necessary time with patients as factors impacting burnout. no nco mm er cia l necessary time with patients as factors impacting burnout.12 no nco mm er cia l 12 yet, i was unable to identify a single publication that fono nco mm er cia l yet, i was unable to identify a single publication that focused primarily on the role of time pressures in burnout. no nco mm er cia l cused primarily on the role of time pressures in burnout. initially, it seemed that my search had been fruitless; this no nco mm er cia l initially, it seemed that my search had been fruitless; this detailed process had not revealed clear or simple answers no nco mm er cia l detailed process had not revealed clear or simple answers to the questions that haunted me when i began. however, no nco mm er cia l to the questions that haunted me when i began. however, by interweaving resonant passages with my reflections on no nco mm er cia l by interweaving resonant passages with my reflections on burnout, i have achieved new insights and refined my goals. no nco mm er cia l burnout, i have achieved new insights and refined my goals. , 2017, i conducted a pubmed no nco mm er cia l , 2017, i conducted a pubmed the medical subject heading (mesh) of “burnout, profes-no nco mm er cia l the medical subject heading (mesh) of “burnout, profesrelationship, for respect of patient autonomy, for promono nco mm er cia l relationship, for respect of patient autonomy, for promo-tion of well-being... no nco mm er cia l tion of well-being... my job as a family physician was the time i spent with no nco mm er cia l my job as a family physician was the time i spent with each patient; that is where it all came together, where i no nco mm er cia l each patient; that is where it all came together, where i found myself in flow, no nco mm er cia l found myself in flow, tions of my mind and my patient. no nco mm er cia l tions of my mind and my patient. us e cian can perform a procedure and the more complicated us e cian can perform a procedure and the more complicated us e each procedure, the more valuable that physician is to the us e each procedure, the more valuable that physician is to theorganization. others us e organization. others assert that time has ethical signifius e assert that time has ethical significance, with specific implications for the patient-physicianus e cance, with specific implications for the patient-physician relationship, for respect of patient autonomy, for promo-us e relationship, for respect of patient autonomy, for promoon ly less lives and limbs. to those who regard medicine as big on ly less lives and limbs. to those who regard medicine as big both the time it takes a physician to provide on lyboth the time it takes a physician to providea service and the complexity of that service have a relative on lya service and the complexity of that service have a relative meaning, the more quickly a physi-on ly meaning, the more quickly a physician can perform a procedure and the more complicatedon ly cian can perform a procedure and the more complicated each procedure, the more valuable that physician is to theon ly each procedure, the more valuable that physician is to the stanford oncologist lidia schapira23 expands on these ideas, writing: …patients want to be known and respected by their professional caregivers…relationships matter… and have a healing quality, even in the face of therapeutic failure.24 the quality of communication and connection between doctor and patient are nebulous, difficult – if not impossible – to grasp, let alone measure. yet, the institute for healthcare’s triple aim initiative – the best care for the whole population at the lowest cost25 – recognizes the importance of the patient’s experience of healthcare, a key component of which is their interactions with physicians. drs. thomas bodenheimer and christine sinsky assert that care of the patient requires care of the provider…[and] recommend that the triple aim be expanded to a quadruple aim, adding the goal of improving the work life of health care providers…26 i hope that my relationships with patients were positive parts of their experience of healthcare, brought them some sense of sustenance, if not healing. i know those relationships buoyed me. they carried me through the sea of paperwork and the long hours. so, when my administration turned the screws, clamping down on the time i could spend with each patient, i began to sink. how might this have impacted my patients? antony broyard, in an ethereal reflection on his experiences as a patient with prostate cancer, wished for something more in his relationship with his doctor. he wrote, i would like a doctor who is not only a talented physician but a bit of a metaphysician too, someone who can treat body and soul…i wouldn’t demand a lot of my doctor’s time; i just wish he would brood on my situation for perhaps five minutes, that he would give me his whole mind just once…i have a wistful desire for my relation to my doctor to be beautiful but i don’t know how this can be brought about.27 what if we not only acknowledged but embraced the therapeutic and ethical essences of time in healthcare? what if we encouraged physicians to spend the time necessary to meet the needs of each patient? what if we honored patients by giving them the time they want, need, and deserve with their doctors? might we foster beautiful physician-patient relationships, enhance healing, and combat burnout? neither my burnout nor its source (i.e., inadequate time to address patient needs) are unique. a ground-breaking national survey of physicians in the united states (us) in 2011 revealed: …the prevalence of burnout among us physicians is at an alarming level…physicians in specialties at the front line of care access (emergency medicine, general internal medicine, and family medicine) are at greatest risk…the fact that almost 1 in 2 us physicians has symptoms of burnout implies that the origins of this problem are rooted in the environment and care delivery system rather than in the personal characteristics of a few susceptible individuals. policy makers and health care organizations must address the problem of physician burnout for the sake of physicians and their patients.28 the same team published a follow-up national survey of us physicians in 2014 – conducted in a manner comparable to that of 2011 – and concluded: burnout and satisfaction with wlb [work-life balance] among us physicians are getting worse. american medicine appears to be at a tipping point with more than half of us physicians experiencing professional burnout…there is an urgent need for…addressing the drivers of burnout among physicians. these interventions must address contributing factors in the practice environment rather than focusing exclusively on helping physicians care for themselves and training them to be more resilient.29 per my pubmed search (table 1), most physician burnout research published in the last five years focused on physician factors or physician-mediated interventions, with much less research proposing modification of practice environments and/or healthcare systems to address burnout. yes, doctors, like everyone else, are supposed to eat right, exercise regularly, and get adequate sleep. in addition, some – including the american medical association – assert that doctors should participate in resiliency trainings,30 mindfulness-based stress reduction (mbsr) courses, and wellness programs. yet, if their personal and professional obligations remain unchanged, just when are they supposed to find the time to participate in these timeconsuming, healthand wellness-promoting activities? the healthcare system status quo remains the same: physicians remain under tremendous pressure to deliver (and document) more complex care for more patients in less time, and we are indoctrinating new generations of physicians to the status quo. the 80-hour work week is here to stay for physicians-in-training. (beyond residency, the 80-hour work week may be exceeded.) on march 17th, 2017, the accreditation council for graduate medical education (acgme)31 released a memo in which it announced that it had preserved the 80-hour work week and the maximum frequency of in-house call (every third night), while increasing the number of consecutive hours that first-year residents (i.e., interns) can work from 16 hours to 28 hours (24 hours, plus up to four hours to manage necessary transitions) so that first-year residents will have the same maximum shift-length as residents beyond their first year. they acknowledge that the question of work hour standards appropriately provokes great emotion in both the graduate medical education community and among segments of the general public…recognize the significant risk of burnout and depression for physicians…[and are obligated to] help physicians find meaning and joy in their work, while also providing them with the resources necessary to care for themselves and their patients. yet, they are assured that their decision is right because [r]esearch conducted over the past five years confirms that the cap of 80 hours worked per week (adopted by the acgme in 2003)... provides the best balance between simulating real word experiences [for] residents…with their ability to be properly rested.32-34 [qualitative research in medicine & healthcare 2017; 1:6925] [page 105] article no nco mm er cia l thing more in his relationship with his doctor. he wrote, no nco mm er cia l thing more in his relationship with his doctor. he wrote, i would like a doctor who is not only a talented physician no nco mm er cia l i would like a doctor who is not only a talented physician but a bit of a metaphysician too, someone who can treat no nco mm er cia l but a bit of a metaphysician too, someone who can treat body and soul…i wouldn’t demand a lot of my doctor’s no nco mm er cia l body and soul…i wouldn’t demand a lot of my doctor’s time; i just wish he would brood on my situation for perno nco mm er cia l time; i just wish he would brood on my situation for perhaps five minutes, that he would give me his whole mind no nco mm er cia l haps five minutes, that he would give me his whole mind just once…i have a wistful desire for my relation to my no nco mm er cia l just once…i have a wistful desire for my relation to my doctor to be beautiful but i don’t know how this can be no nco mm er cia l doctor to be beautiful but i don’t know how this can be what if we not only acknowledged but no nco mm er cia l what if we not only acknowledged but embraced the therapeutic and ethical essences of time in no nco mm er cia l embraced the therapeutic and ethical essences of time in healthcare? what if we encouraged physicians to spend no nco mm er cia l healthcare? what if we encouraged physicians to spend the time necessary to meet the needs of each patient? no nco mm er cia l the time necessary to meet the needs of each patient? what if we honored patients by giving them the time theyno nco mm er cia l what if we honored patients by giving them the time they want, need, and deserve with their doctors? might we fos-no nco mm er cia l want, need, and deserve with their doctors? might we fosthey supposed to find the time to participate in these timeno nco mm er cia l they supposed to find the time to participate in these time-consuming, healthand wellness-promoting activities? no nco mm er cia l consuming, healthand wellness-promoting activities?u se tion – assert that doctors should participate in resiliency us e tion – assert that doctors should participate in resiliency 30 us e 30 mindfulness-based stress reduction (mbsr) us e mindfulness-based stress reduction (mbsr)courses, and wellness programs. yet, if their personal and us e courses, and wellness programs. yet, if their personal and professional obligations remain unchanged, us e professional obligations remain unchanged, they supposed to find the time to participate in these time-us e they supposed to find the time to participate in these timeon ly tice environments and/or healthcare systems to address on ly tice environments and/or healthcare systems to address burnout. yes, doctors, like everyone else, are supposed to on lyburnout. yes, doctors, like everyone else, are supposed to on lyeat right, exercise regularly, and get adequate sleep. in adon lyeat right, exercise regularly, and get adequate sleep. in addition, some – including the american medical associa-on ly dition, some – including the american medical association – assert that doctors should participate in resiliencyon ly tion – assert that doctors should participate in resiliency mindfulness-based stress reduction (mbsr) on ly mindfulness-based stress reduction (mbsr) in the real world, physicians are burning out at an alarming rate. they are not getting what they want and need to sustain and promote their long-term professional and/or personal health and wellbeing. heightened awareness of this crisis, and its potential impact on patient care,35 has triggered numerous well-intended reactions, each designed to address hypothesized drivers of burnout. the american college of physicians (acp)36 has linked increasing administrative tasks to greater stress and burnout in physicians and developed the patients before paperwork initiative in 2015.37,38 the same year, the nejm group8 launched nejm catalyst,9,10 a think-tank engaged in the burnout conversation which recently released a publication entitled physician burnout: the root of the problem and the path to solutions7. most medical schools and residency programs have launched wellness programs.39-45 shouldn’t i feel encouraged by these efforts? in one sense, i am deeply encouraged. the acp and nejm catalyst initiatives especially inspire hope because they recognize the importance of preserving a physician’s time for patient care18,46 and rekindling joy in medicine.7 yet, the more i read about resiliency trainings or wellness program proposals for physician burnout, the less convinced i am that they will be significantly effective without matching reforms to the healthcare system that protect the time that doctors need to work with and for their patients, that precious time which kindled and rekindled my joy in medicine. like me, dr. pamela wible47 is skeptical that wellness programs alone will save our burned-out doctors, writing:…medical organizations are racing to create wellness programs as the big new innovative solution. well that kinda seems like forward momentum. but can a wellness committee really save our doctors? misery in medicine is at an all-time high. i get…messages…every day from miserable doctors like this one: today i realized that if i become a dog walker and charge 25 us dollars ($)/hour and walk 5 dogs per day i would make my equivalent salary with a lot less hassles…i could be the most over-qualified dog walker out there with a bachelors, masters, doctorate and specialty certification…maybe that would be more helpful to society than the assembly-line medicine i currently participate in and i would likely be happier and healthier. what do you think? here’s what i think. this doctor is well. she’s got normal vital signs. she exercises and eats well…[she is doing] what well-adjusted rational doctors want to do these days. wellness is not the antidote for misery. happiness is.48 can the importance of happiness – to physicians and patients alike – be overestimated? does happiness spring forth from health, from wellness? what is the role of a physician in supporting the happiness of her patients? dr. peter aird49 eloquently jettisons the idea that physicians, by rote, champion health and wellness without any understanding of what is, to their patients, most meaningful: what makes life worth living, the proverbial wellspring from which their happiness bubbles up. he writes: i went to the woods because i wanted to live deliberately, i wanted to live deep and suck out all the marrow of life; to put to rout all that was not life and not, when i had come to die discover that i had not lived...[henry david thoreau] with apologies to henry thoreau: i went to the woods because i wanted to lower my bmi, i wanted to live a bit longer than i might otherwise have done and reduce my hba1c; to reduce my serum cholesterol below 5.0 and not, when i had come to die, discover that i really should have switched to a low fat spread…it doesn’t have the same ring to it somehow…if we are to be healthier… we…have to want to be healthier because life is worth living…[to] encourage patients to look away from health as the source of their happiness to something bigger and better – something really worth living for…50 it is the same for physicians. we will not become more resilient, mindful, well, and resistant to burnout – no matter how many resiliency trainings, mbsr courses, or wellness programs we participate in – if we cannot build and work within a system that recognizes, respects, and protects the aspects of medicine that kindle and rekindle our joy, lift us up, and renew our commitment to medicine day after day, week after week, month after month, and year after year. conclusions this is your assignment. feel all the things. feel the hard things. the inexplicable things, the things that make you disavow humanity’s capacity for redemption. feel all the maddening paradoxes. feel overwhelmed, crazy. feel uncertain. feel angry. feel afraid. feel powerless. feel frozen. and then focus. pick up your pen…pick up your damn chin…reveal the fierce urgency of now. reveal how shattered we are, how capable of being repaired. but don’t lament the break. nothing new would be built if things were never broken. a wise man51 once said: there's a crack in everything. that’s how the light gets in. get after that light. this is your assignment. (wendy macnaughton and courtney e. martin)52 i think taking the time to care for patients – with empathy, deep consideration, and mutual respect – was my light. indeed, it was the principal reason that i pursued medicine as a career; it was the assignment i gave myself. those of us who have burned out have invaluable insights to share. we must not rely on policy makers and health care organizations to address burnout; we must contribute what we have learned and work to prevent and heal burnout – and its dire consequences53-55 – in ourselves and our colleagues. but how do we begin? in a blog post, an anonymous physician shares: i burned out, big and bad. i can see that now. my practice environment had become gradually untenable and every attempt i made to change it was blocked…risk management shudders at burned-out doctors and strongly recommends avoidance. but we’re still here, we’re still trained [page 106] [qualitative research in medicine & healthcare 2017; 1:6925] article no nco mm er cia l programs alone will save our burned-out doctors, writno nco mm er cia l programs alone will save our burned-out doctors, writ…medical organizations are racing to create wellness no nco mm er cia l …medical organizations are racing to create wellness programs as the big new innovative solution. well that no nco mm er cia l programs as the big new innovative solution. well that kinda seems like forward momentum. but can a wellness no nco mm er cia l kinda seems like forward momentum. but can a wellness committee really save our doctors? misery in medicine is no nco mm er cia l committee really save our doctors? misery in medicine is at an all-time high. i get…messages…every day from misno nco mm er cia l at an all-time high. i get…messages…every day from miserable doctors like this one: today i realized that if i beno nco mm er cia l erable doctors like this one: today i realized that if i become a dog walker and charge 25 us dollars ($)/hour and no nco mm er cia l come a dog walker and charge 25 us dollars ($)/hour and walk 5 dogs per day i would make my equivalent salary no nco mm er cia l walk 5 dogs per day i would make my equivalent salary with a lot less hassles…i could be the most over-qualifiedno nco mm er cia l with a lot less hassles…i could be the most over-qualified dog walker out there with a bachelors, masters, doctorateno nco mm er cia l dog walker out there with a bachelors, masters, doctorateno nco mm er cia l conclusions no nco mm er cia l conclusions this is your assignment. feel all the things. feel the no nco mm er cia l this is your assignment. feel all the things. feel the hard things. the inexplicable things, the things that make no nco mm er cia l hard things. the inexplicable things, the things that make you disavow humanity’s capacity for redemption. feel all no nco mm er cia l you disavow humanity’s capacity for redemption. feel all us e of medicine that kindle and rekindle our joy, lift us up, us e of medicine that kindle and rekindle our joy, lift us up,and renew our commitment to medicine day after day, us e and renew our commitment to medicine day after day, week after week, month after month, and year after year.us e week after week, month after month, and year after year. on ly for physicians. we will not become more resilient, mindon ly for physicians. we will not become more resilient, mindful, well, and resistant to burnout – no matter how many on lyful, well, and resistant to burnout – no matter how manyresiliency trainings, mbsr courses, or wellness programs on lyresiliency trainings, mbsr courses, or wellness programs we participate in – if we cannot build and work within a on ly we participate in – if we cannot build and work within a on ly system that recognizes, respects, and protects the aspectson ly system that recognizes, respects, and protects the aspects of medicine that kindle and rekindle our joy, lift us up,on ly of medicine that kindle and rekindle our joy, lift us up, physicians, and we’d like to get back on our feet. it’s taken me a long time to get to a point where i can share this. it’s not pretty, it’s not pleasant, but it is happening more and more. those of us who make it through burnout would like a way to rebuild. we need to start talking about what comes after physician burnout. please.56 what will become of this anonymous doctor who wants to talk about what comes after burnout? she may not see a way forward because the path has not yet been trodden. or, it has been traveled by so few that it is hard to find. in her words, i read loneliness, desperation, and an emphatic plea for a companionable hand to reach out and help her up and along the path. though she may not realize it yet, she has, by sharing her story, taken her first step toward rebuilding her life. what comes next? this hashing and rehashing of my decision to leave clinical medicine tethers me to my past and, in some ways, hinders my forward progress. yet, i do not consider it a waste of time to examine my unlived life, the parallel life i might have led.57 rather, i consider it a natural stage in my grieving process. i grieve the loss of this dream i nurtured for decades and the relationships i might have cultivated and maintained with my patients. i had to experience some combination of denial, isolation, anger, bargaining, and depression58 before i could reach any type of acceptance, inner peace, and resolution to act, at my own pace, with decisiveness.3 had i been able to press a pause button on my life, i might have progressed more quickly through my stages of grief. however, i chose to mend the machine while it was in motion59, working hard to maintain a relevant presence – albeit a nonclinical presence – in medicine. according to a recent article in harvard business review,60 the busier we are, the more critical it is to step away from the noise and cultivate silence. when we’re constantly fixated on the…agenda…it’s tough to make room for truly different perspectives or radically new ideas. it’s hard to drop into deeper modes of…attention. and it’s in those deeper modes of attention that truly novel ideas are found.61 recently, i have been moved to heightened self-awareness by a number of circumstances and have cleared ground in my schedule.1 i have allowed myself the time, space, and silence to consider my past, truly different perspectives, and radically new ideas, holding them up to the light to determine their suitability for me, with all my strengths and challenges. like me, medicine has its strengths and challenges. burnout is a challenge that we both face. therefore, both of us will need to gaze unflinchingly at our cracks – precious cracks through which the light gleams51 – to become truly selfaware, evolve, reform our best practices, become excellent, and achieve our full potential. this process is daunting; it will require strength, dedication, collaboration, truly novel ideas, and time, tincture of time. yet, the journey of a thousand miles begins with one step.62 let’s begin. references 1. castelloe e. finding myself in medicine. qual res med health 2017;1:1-5. 2. maslach c, schaufeli w, leiter m. job burnout. ann rev psychol 2001;52:397-422. 3. mindfulness. newsweek special edition. 2017:18. 4. medline fact sheet nlm.nih.gov. 2017 [cited 23 may 2017]. available from: https://www.nlm.nih.gov/pubs/factsheets/medline.html 5. pubmed ncbi ncbi.nlm.nih.gov. 2017 [cited 8 may 2017]. available from: https://www.ncbi.nlm.nih.gov/pubmed/ 6. google scholar. 2017 [cited 18 may 2017]. available from: https://scholar.google.com/ 7. shanafelt t, swensen s, mohta n, et al. physician burnout: the root of the problem and the path to solutions. boston: nejm catalyst; 2017 pp 1-52. 8. nejm group. 2017 [cited 7 june 2017]. available from: http://nejmgroup.org/ 9. nejm catalyst home practical innov health care deliv nejm catalyst. 2017 [cited 7 june 2017]. available from: http://catalyst.nejm.org/ 10. lee t, campion e, morrissey s, 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[qualitative research in medicine & healthcare 2017; 1:6925] [page 107] article no nco mm er cia l had i been able to press a pause button on my life, i no nco mm er cia l had i been able to press a pause button on my life, i might have progressed more quickly through my stages no nco mm er cia l might have progressed more quickly through my stages mend the machine while it no nco mm er cia l mend the machine while it , working hard to maintain a relevant no nco mm er cia l , working hard to maintain a relevant presence – albeit a nonclinical presence – in medicine. no nco mm er cia l presence – albeit a nonclinical presence – in medicine. according to a recent article in harvard business reno nco mm er cia l according to a recent article in harvard business rethe busier we are, the more critical it is to step no nco mm er cia l the busier we are, the more critical it is to step away from the noise and cultivate silence. no nco mm er cia l away from the noise and cultivate silence. constantly fixated on the…agenda…it’s tough to make no nco mm er cia l constantly fixated on the…agenda…it’s tough to make room for truly different perspectives or radically new no nco mm er cia l room for truly different perspectives or radically new ideas. it’s hard to drop into deeper modes of…attention. no nco mm er cia l ideas. it’s hard to drop into deeper modes of…attention. and it’s in those deeper modes of attention that trulyno nco mm er cia l and it’s in those deeper modes of attention that truly 61 no nco mm er cia l 61 recently, i have been moved tono nco mm er cia l recently, i have been moved to 12. linzer m, poplau s, babbott s, et al. worklife and wellness no nco mm er cia l 12. linzer m, poplau s, babbott s, et al. worklife and wellnessin academic general internal medicine: results from a nano nco mm er cia l in academic general internal medicine: results from a na-u se formation of health care delivery: the launch of nejm catus e formation of health care delivery: 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2011 and 2014. mayo clin proc 2015;90:1600-13. 30. improving physician resiliency. stepsforward.org. 2017 [cited 18 may 2017]. available from: https://www.stepsforward.org/modules/improving-physician-resilience 31. acgme. acgme.org. 2017 [cited 17 july 2017]. available from: http://www.acgme.org/ 32. acgme common program requirements. acgmecommon.org. 2017 [cited 17 july 2017]. available from: https:// acgmecommon.org/announcement 33. dwyer c. rookie doctors will soon be allowed to work up to 28 hours straight. npr.org. 2017 [cited 7 may 2017]. available from: http://www.npr.org/sections/thetwoway/2017/03/10/519662434/rookie-doctors-will-soon-be-allowed-to-work-up-to-28-hours-straight 34. asch d, bilimoria k, desai s. resident duty hours and medical education policy — raising the evidence bar. n engl j med 2017;376:1704-6. 35. allen m, pierce o. medical errors are no. 3 cause of u.s deaths, researchers say. npr.org. 2016 [cited 18 april 2017]. available from: 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missing out. new york: farrar, staus and giroux; 2012. 58. kub̈ler-ross e, byock i. on death & dying. 59. tolstoy l. anna karenina, 1877. 60. ideas and advice for leaders. hbr.org. 2017 [cited 17 july 2017]. harvard business rev. available from: https://hbr.org/ 61. the busier you are, the more you need quiet time. harvard business rev 2017 [cited 16 july 2017]. available from: https://hbr.org/2017/03/the-busier-you-are-the-more-youneed-quiet-time 62. bbc world service. learning english. moving words. bbc.co.uk. 2017 [cited 17 july 2017]. available from: http://www.bbc.co.uk/worldservice/learningenglish/movingwords/shortlist/laotzu.shtml [page 108] [qualitative research in medicine & healthcare 2017; 1:6925] article no nco mm er cia l 35. allen m, pierce o. medical errors are no. 3 cause of u.s no nco mm er cia l 35. allen m, pierce o. medical errors are no. 3 cause of u.s deaths, researchers say. npr.org. 2016 [cited 18 april no nco mm er cia l deaths, researchers say. npr.org. 2016 [cited 18 april 2017]. available from: http://www.npr.org/sections/healthno nco mm er cia l 2017]. available from: http://www.npr.org/sections/healthshots/2016/05/03/476636183/death-certificates-undercountno nco mm er cia l shots/2016/05/03/476636183/death-certificates-undercount36. american college of physicians, internal medicine, acp. no nco mm er cia l 36. american college of physicians, internal medicine, acp. american college of physicians. 2017 [cited 7 june 2017]. no nco mm er cia l american college of physicians. 2017 [cited 7 june 2017]. available from: https://www.acponline.org/ no nco mm er cia l available from: https://www.acponline.org/ 37. erickson s, rockwern b, koltov m, mclean r. putting pano nco mm er cia l 37. erickson s, rockwern b, koltov m, mclean r. putting patients first by reducing administrative tasks in health care: ano nco mm er cia l tients first by reducing administrative tasks in health care: a position paper of the american college of physicians. annno nco mm er cia l position paper of the american college of physicians. ann blog/weird-reason-wellness-programs-wont-work/ no nco mm er cia l blog/weird-reason-wellness-programs-wont-work/49. aird p, the bjgp blog. bjgpblog.com. 2017 [cited 17 july no nco mm er cia l 49. aird p, the bjgp blog. bjgpblog.com. 2017 [cited 17 july2017]. available from: https://bjgpblog.com/tag/peter-aird/ no nco mm er cia l 2017]. available from: https://bjgpblog.com/tag/peter-aird/ 50. aird p. health: it’ll be the death of us: institutional arrogance no nco mm er cia l 50. aird p. health: it’ll be the death of us: institutional arrogance in the health service? br j gen pract 2012;62:317-8. no nco mm er cia l in the health service? br j gen pract 2012;62:317-8. 51. the official leonard cohen site. leonardcohen.com 2017 no nco mm er cia l 51. the official leonard cohen site. leonardcohen.com 2017 us e [cited 17 july 2017]. available from: http://www.idealmedus e [cited 17 july 2017]. available from: http://www.idealmedus e 48. wible p. the weird reason why wellness programs won’t us e 48. wible p. the weird reason why wellness programs won’t work. available from: http://www.idealmedicalcare.org/us e work. available from: http://www.idealmedicalcare.org/ blog/weird-reason-wellness-programs-wont-work/us e blog/weird-reason-wellness-programs-wont-work/ 49. aird p, the bjgp blog. bjgpblog.com. 2017 [cited 17 julyus e 49. aird p, the bjgp blog. bjgpblog.com. 2017 [cited 17 july on ly www.stfm.org/newsjournals/educationcolumns/septemon ly www.stfm.org/newsjournals/educationcolumns/septem46. tai-seale m, mcguire t, zhang w. time allocation in prion ly46. tai-seale m, mcguire t, zhang w. time allocation in pri-mary care office visits. health serv res 2007;42:1871-94. on lymary care office visits. health serv res 2007;42:1871-94. 47. wible p. ideal medical care. idealmedicalcare.org 2017on ly 47. wible p. ideal medical care. idealmedicalcare.org 2017 [cited 17 july 2017]. available from: http://www.idealmed-on ly [cited 17 july 2017]. available from: http://www.idealmedlayout 1 [qualitative research in medicine & healthcare 2017; 1:6367] [page 51] introduction a narrative of anorexia nervosa i don’t know why i feel so down. i shouldn’t, considering how lucky i am. there are so many opportunities available to me and i’m very privileged. i feel like i don’t have any friends and that something is wrong with me. how do bullied people survive? words that come to mind: gone, spirit, die, heart, love, selfish, why, light, dark, wrong, alone, problems, escape, psycho, worth what’s wrong? do i not have friends? is there something very wrong with me….. am i wrong? did i do something very ‘wrong’ because i feel like i did. i’m not sure that i’m worthy. am i living for others? that’s kind of conceited to think… but i can’t think for myself? i can never make decisions. i’m genuinely worried about losing my mind and myself. i’m scared… what if i become psycho? i don’t know what’s wrong and i don’t know how to fix it. my own thoughts are scaring me. my nightmares scare me. am i scared of myself? maybe because i put so much emphasis on being good. i put so much of myself, all of myself, into being good. now, it seems that the world might not value goodness. what is goodness worth? (figure 1). living with anorexia nervosa i was deteriorating; throughout my freshman year at college, i dropped from 125 to 93 lbs. i unwillingly agreed to participate in an outpatient therapy program at water’s edge counseling and healing center in burnsville, mn. a family friend later confided in me – your mother thought she was watching you die; the mortality rate of an is from between five to twenty percent.1 the program ran from monday to thursday, 8:30 am to 2:30 pm. the length of weekly duration depended on my speed of recovery; which meant a healthy weight and mentality approved by a team of counselors. i stayed for about three months. the adult intensive program for eating disorders used cognitive behavioral therapy-expanded (cbt-e), acceptance and commitment therapy (act) and life skills (similar to those of dbt); the program also provided education, skills teaching, meal support, nutrition education, somatic resourcing, spiritual guidance, and movement therapies.3 before anorexia nervosa before moving away for college, my way of being in the world did not seem as problematic or out of control. changing the narrative: a social reconstruction of anorexia nervosa emily ciabattoni university of new hampshire, durham, nh, usa abstract the following article works to externalize anorexia nervosa and reconstruct our understanding of what psychiatry classifies as a mental illness towards a visiting presence. i recognize personal experience as a means to knowing. by analyzing particular artifacts created during the prevalence, distance, and coordination of anorexia nervosa (an) – i deconstruct societal discourses. this perspective calls us to reconsider other cultural concepts such as control, freedom, etc. in the end, i propose that recovery requires the coordination of multiplicities in which an is kept in conversation and balanced with other discourses – rather than severing an’s voice completely. correspondence: emily ciabattoni, 43 harmony crossing, east bridgewater, 02333 ma, usa. tel: +1.612-388-8476. email: emmyciabattoni@gmail.com conflict of interest: there were no relevant financial associations with this article. however, it might appear that the heavy, historical blame cast on the mother-daughter relationship in regards to eating disorders influenced the portrayal of my mother – as not overly involved and therefore innocent. i have entertained this possibility but adhere to what is written – and as written, my experience remains true. in comparison with my friends’ moms, my aunts as mothers, and my grandmother as a mother, my mother exists as relatively less involved. key words: anorexia nervosa; social construction; narrative. dedication: this is dedicated to dr. sheila mcnamee for her inspiration and guidance; to maz for always believing in me; and to both of my parents – for their greatest efforts in raising me to be the best i can be. note: presented at university of new hampshire’s undergraduate research conference 2016. received for publication: 2 november 2016. revision received: 7 february 2017. accepted for publication: 8 february 2017. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright e. ciabattoni, 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:51-62 doi:10.4081/qrmh.2017.6367 qualitative research in medicine & healthcare 2017; volume 1:51-62 no nco mm er cia l u se on ly although dangerous discourses circulated, i was involved in multiple communities and exposed to various discourses. i had developed a network of people, places, and things that checked and balanced each other; surrounded by people i loved and things i loved to do, i had access to multiple generative discourses and vitality. i could almost always find a level of security and affirmation in someone’s voice or relationship. my environment felt dynamic yet balanced; and constructed an overall fulfilling way of being. of course, my childhood was not perfect; my parents fought and divorced in high school, my father exercised authoritarian control, etc. sometimes i struggled with the heavy-weighted discourses of health, athletic excellence, restriction, small, silent, and perfect; but these discourses seemed to exist on more micro levels. when these discourses amplified power and stole the show—they demanded a most submissive way of being. moving away when my environment changed, everything changed. an visited me harshly when i felt most isolated and alone; or i felt most isolated and alone when an visited harshly (i’m not sure). i moved away from home in prior lake, mn to attend college in the city. uprooted from my life and without a supportive network in place for coping, i struggled to shift my way of being. i scavenged for any kind of guidance; as the daughter of a patriarchal family, i sought demands—demanding voices. i became susceptible and submissive to dominant discourse. i engaged in restriction, smallness, health, athletic excellence, and other heavy-weighted discourses i had previously depended on—without the means to check and balance with healthy presences and discourses surrounding me. while searching for guidance, i felt the dominant systems more deeply than ever before—and religiously participated in them as if they were my familial pursuit towards health or figure skating career. my way of being strove for something big, something powerful; something i wasn’t aware of and never questioned. i strove for the good—for the dominant. and in the city—the good was on billboards, magazines, highprofile professors, everywhere. a chaotic, political war took place—set at the site of my self. an policed my body and struggled for control. although other discourses fought for a say, policing didn’t allow it—policing only allowed the good. a relational exploration of anorexia nervosa i wrote the previous diary entry in the presence of an [anorexia nervosa]. the narrative holds potential for relational exploration; it illustrates and reflects multiple societal constructions of an. whether it’s a problem within the self, an obsession with what’s good, or being lost in [page 52] [qualitative research in medicine & healthcare 2017; 1:6367] article figure 1. journal entry written during my freshman year of college in the strong presence of anorexia nervosa. no nco mm er cia l u se on ly an isolating spiral of questions, this way of being is an active product of and agent within our environment. an serves as a psychiatric diagnosis meant to classify a mental illness; in which the problem lies within the mind of an individual. but through a relational perspective, an exists differently. an existed as a product of my environment—a way of being in society developed by grander societal systems; because it imitated these systems. an also existed as an agent within my environment—in which it further perpetuated and constructed systems. as socially constructed, an did not exist as a mental illness inside of me; an became a problematic presence of its own. an understanding of an as a socially constructed product relieved me—it might’ve even healed me. it lifted the weight from my shoulders, extracted the strain of evil from my veins. it felt like maybe, it wasn’t all my fault. when it was my fault— and meanwhile, i was starving— the label became a growing burden on a deteriorating body. i not only scavenged the strength to fight for wellbeing, but was forced to maintain the strength in bearing the social consequences. lock et al.1 encourages externalization as a means to understanding— by separating anorexia from the person, it becomes possible to ask about anorexia’s tactics of voice, about its rhetorical strategies, the moves it makes, its attempts to cover its tracks in order to deny its effects (p. 267). understanding can lay a solid foundation for recovery; april chatham-carpenter2 testifies, separating out my voice from the voice of anorexia seemed to give me the freedom to choose which voice to listen to and ‘obey’. acquaintances to an commonly refer to its voice1,2-9 — like it’s some kind of presence that solidifies unworthiness and fuels starvation. similar to other acquaintances of an, recovery didn’t demand severing an’s voice completely;1,2 recovery meant learning to live in relationship with the voice through environmental re-creation. environmental recreation encompassed my coordinated actions and relationship with self, others, activities, communities, values, beliefs, etc. environmental re-creation encouraged me to alter my entire way of being in the world. i explore my family, school, figure skating, and college environments because i spent the majority of my life in these communities; the heavy-weighted discourses that constructed these environments constructed me as well. i examine various artifacts—a diary entry written in the heavy presence of an, a recording of a vivid nightmare, and three therapeutic drawings. i examine each artifact as a window into my relationship with an—i ask: considering my relationship with an at that time, what insight does each provide about an’s way of being? by deconstructing heavy-weighted discourses that constructed my way of being—health, athletic excellence, restriction, smallness, silence, perfection— i discover discursive systems in which an thrived. with this understanding, i offer personal and clinical strategies meant to discourage an’s way of being. following, i describe how an seemed to mimic grander societal systems—through ideology, policing, security, and isolation. by reconstructing some core cultural concepts, i believe we could discourage an’s way of being and eventually—destructive societal systems. in conclusion, i offer the concept of coordinated multiplicities as a tool to create another way of being. below i offer an outline meant to guide the reader through my relational exploration of an. i. discourses a. health b. athletic excellence & restriction c. small d. silent e. perfect *by deconstructing the heavily-weighted discourses that illustrated and constructed my way of being with an— i discovered systems in which an was allowed to thrive. following, i offer strategies meant to discourage an’s ways of being. ii. personal and clinical strategies a. what is health? b. image overload c. the importance of deviance d. the good *these strategies call us to reflect on society— and more specifically, how an seems to embody even grander societal systems. iii. the ideal a. policing b. security c. isolation 1. smothering the multi-being *i offer reconstructions of cultural concepts meant to discourage an’s way of being. iv. conceptual reconstructions a. control b. mother & daughter c. intelligence d. deviance *how can we use these concepts to create ways of being that discourage an and the societal systems it perpetuates? v. another way of being a. an illustration of being with an b. an illustration of coordination of multiplicities c. my story throughout this reflective journey, i aim to fill the gap in an research by offering the patient’s perspective. as a former patient, i recognize personal experience and narrative prose as a means to knowing. my thoughts, feel [qualitative research in medicine & healthcare 2017; 1:6367] [page 53] article no nco mm er cia l u se on ly ings, and understandings are the hardest to deconstruct; it’s hard to realize how my way of being, which seemed so private and individual, was actually a product of and response to my environment. i present the symptoms associated with an as developments constructed by a way of being in the world; the narrative of this way-of-being could be recreated as a means to recovery not only on an individual level, but on a communal level as well. i hope that my story will create sense for others who are struggling to find their own ways of being with an. discourses i examine personal experiences of heavy-weighted discourses within the following environments: family, school, figure skating, college, therapy. the discourses that ran throughout my family were not intentionally harmful; they were discourses that have been at work constructing american-patriarchal families for decades. these discourses were societal, traditional, and normal—they run through many other american families today. i truly believe that my parents raised me to be the best i could be in the ways they knew how. they deeply cared and i am greatly appreciative. however, throughout my family, school, figure skating, and college environments— heavily weighted discourse existed as dominant discourse. i examine the following dominant discourses to explore and more deeply understand an’s ways of being. health the rules— – no hydrogenated oils – no sugary cereal (unless mixed with a healthy one) – no juice (unless watered down 1/2) – 1 treat per day: snack-size candy bar, ice cream treat, cookie – 1 extra per day: jelly, yogurt, syrup, sugary cereal dad! dad! can we get this? if it was under 12 grams of sugar with no hydrogenated oils, the outlook was promising. every once in awhile we’d disregard the rules for a pack of klondike bars on sale or vanilla pudding specials— so i didn’t feel deprived. but my friends’ moms let them eat candy without supervision, so whenever my brother and i went over there— i’d stuff myself with a minimum of six pieces. my family was health-conscious; we limited unhealthy food as a means to health. although our list of rules was detailed, it didn’t feel extreme. i felt healthy. we were an active family—always outside, swimming, or playing sports. my parents’ approach to health likely came from their careers as athletes: my mom a gymnast, my dad an avid tennis player. the health discourse tends to run heavy in sports—with themes of limitation as a means to health and athletic excellence. athletic excellence and restriction more rules— – no white bread – no fried foods – lots of water i stared at the menu on the red and white checkered tablecloth in utter devastation. fried chicken or fried fish. seriously... no other options??? at the famous fried chicken place across the border in illinois, my family seemed to understand when i peeled the fried skins off my fish dinner— i was dedicated to the pursuit of athletic excellence. although the competitive figure skating list wasn’t as detailed, it was religion; and athletic excellence went hand-in-hand with restriction. furthermore, it implied thinness. a pound lost or added— the little dress was merciless. my competitors could see it. my coach could see it. the judges could see it. and in a highly competitive environment, everyone was watching. but when i left for college, and moved away from my family and figure skating community, another list of rules developed— but this time, who was watching? small an’s rules— – no hydrogenated oils – no sugary cereal – no juice – no treats – no white bread – no white carbs – no fried foods – lots of water – breakfast: ½ cup granola – lunch: ½ cliff bar, handful pistachios – dinner: not too much but the smaller she gets, the tighter her skin pulls—the more her skin encourages her to stay small, get smaller. and the tighter it’s pulled to her body, the more she comes together. she feels held, in a comforting, secured way. she’s secured. by her skin. by the feeling. small. *written during therapy the restriction discourse permeated the majority of my childhood— threaded with implications of health, athletic excellence, and overall—thinness. these concepts became interchangeable definitions in and of each other. small became a dominant discourse and priority. i utilized restriction to shrink myself; but more importantly, to better myself. silent small existed not only physically, but figuratively as well. as the daughter in a traditional, patriarchal family, i [page 54] [qualitative research in medicine & healthcare 2017; 1:6367] article no nco mm er cia l u se on ly was expected to be small and silent under authority. the paternal side of my family highly values the silent presence of children and commonly considers questioning as talking back. the silent discourse forbid complaining and negative talk; communicative strategies that work towards change and countering dominant discourse. the silent discourse was prevalent not only at home, but in school, too—where i existed as the shy kid among peers i’d known for nine years. in class, the teacher—the face of authority—was always watching and supervising. to be good i remained silent. once labeled shy, i latched to that identity— and so did the other kids. at anytime, i could’ve changed things—i could’ve spoken out, or raised my voice, or started talking to someone. but i didn’t. once i internalized the label, that reality didn’t exist for me. if i would’ve spoken out, or made a joke, the other kids would’ve been seriously surprised— and i know this because it happened. with my close friends, i’d get loud. and if the other kids heard me, they’d freak out—omg i haven’t heard your voice that loud before! no, no, it’s good! most of the students supported me breaking out of my shell—but they also drew more attention to me. when they noticed me, i noticed i wasn’t being quiet anymore. and the discourses deduced that i wasn’t being good. most of the time, the good felt limiting. regardless, i strove for it—even if that meant missing recess to an extra 45 minutes on a coloring assignment. i looked for, listened to, and internalized the good; i never questioned it. and under the authority of an, i did the same. perfect after completing the list of chores, i waited for my dad to evaluate each item. while he scanned my bedroom, the living room, the kitchen— i anxiously peered behind him. fingers crossed i didn’t miss a single scrap. if we left an item, it wasn’t clean at all; if it wasn’t perfect, it was imperfect. perfection allowed for only one way of being. perfection itself could be understood as a heavilyweighted dominant discourse; which constructs one good and lots of bad. perfection perpetuated throughout my figure skating career. physically, the blades weren’t forgiving—do it their way, with little margin, or you’re likely flat on the ice. jumps, edges, and spins were all judged and evaluated by the book— the one way, the perfect way. discourses of ‘ideal’ circulated throughout the figure skating community in various dimensions; the priority of perfection permeated on and off ice practice, eating habits, sleeping habits, mental/cognitive training, relationships, etc. within the figure skating environment, everyone seemed to speak the same ideological discourses—continuously adding weight to these ideals. in the presence of an, i practiced restriction as perfection—this singular good, this singular way of being, enabled whatever means possible to achieve it. personally, perfection began to walk hand-in-hand with the good. i thought that in order to be good, i must be perfect—and both concepts held their own casts of synonyms, definitions, and ideologies. personal and clinical strategies an’s way of being was not developed by these five discourses alone. societal systems that encouraged heavily-weighted dominant discourse to construct my environment seemed to enable an’s way of being. as mentioned, i participated in a three-month outpatient therapy program—i was one of about fifteen adult patients who struggled with eating disorders, anxiety, and depression. overall, the center did wonders for my recovery; it created a temporary environment in which i learned another way of being in the world. throughout therapy, the following ideas ignited change and fueled recovery. these sections are not directly intended as criticism; rather a toolbox in which to draw instruments for change. what is health? what is health and how is it illustrated? understandings of health seem to come from a combination of discourse and bodies—which commonly manifests in images. images of the body exist walking around us, on the big screen, in magazines, and through the infamous, pervasiveness of advertisements. ads don’t only sell products and concepts; ads sell normalcy.4 what’s normal becomes what’s seen and what’s abnormal is less seen. but with an overabundance of advertising at our fingertips and every turn of the head—the ideal, photographic body becomes normal, attainable, and even healthy. the image is thrown at us without any understanding of the processes involved in getting there. asking the question what is health could aid in recovery; answers might reveal definitions, synonyms, antonyms, and ideologies attached to an individual’s understanding of health. image overload the prevalence and overabundance of the ideal, photographic body invites us to merely look at it. which seems harmless—what’s the harm in viewing a photograph? according to jean kilbourne4 in killing us softly 4, almost everyone feels personally exempt from the influence of advertising. but by merely looking at idealistic bodies, we accept them; we don’t realize the influence because only 8% of ad messages are received by the conscious mind— the majority of advertising works on a subconscious level.4 in accepting a particular image, we accept a reality. kilbourne4 illustrates the power of advertisements in which they create an atmosphere of standards and expectations that we swim within; furthermore, the reign of these images act as dominant discourses. sontag,5 a respected photography critic, refers to the superiority of the photograph as the dominant and most natural way of re [qualitative research in medicine & healthcare 2017; 1:6367] [page 55] article no nco mm er cia l u se on ly ferring to appearances. the unquestioned pervasiveness of the photographic body embodies a dominant discourse—and demands the way to be. so dominant discourse can become tangible, strong, and maybe even normalized through the photographed body—without words and an obvious means of questioning. furthermore, the extreme ambiguity and limited context of public photographs invite false interpretations; false realities. the camera may lie through edit, retouch, photoshop, and staged juxtapositions. the fake photograph—the one we might never notice, only merely look at—can falsify reality.5 these unrealistic images of what we should be seem to justify whatever means necessary in achieving that image. in an image saturated world— who knows what we agree to upon viewing the photograph without question. the importance of deviance dominant discourse seems to condemn deviance; but its importance should be recognized. without deviance, there would be neither options nor alternative discourse— just assimilation. denying deviance would deny change and difference. furthermore, deviance multiplies possibilities, potentials, and vitality.6 if deviance didn’t exist, society would forever function at the will of the dominant—at the will of the empirical. empiricism as perfection heightens pressure on standards and expectations. although objective and classifying, garner’s8 development and validation of a multidimensional eating disorder inventory for anorexia nervosa and bulimia study concludes that a sense of ineffectiveness sets an acquaintances apart from weight-concerned females. perfectionism, because unattainable, could fuel this sense of ineffectiveness.8 but we don’t have to exist in the empirical, perfect manner; rather than prioritizing the empirical answer, we could encourage deviant and different answers. if we recognized the multitude of right ways instead of the lonely one—pressures on standards and expectations might lighten. therefore, how could a child be taught the importance of deviance? how would a traditional western family restructure to not only support the authoritarian voice, but give rise to multiple voices? how would an reconstruct its way of being when confronted by deviance? personally, partaking in a vast array of experiences such as painting, drawing, yoga, hiking, camping, travelling, meeting new people, trying new foods, etc. were my first steps in breaking free from an’s rigid regime. i began another way of being filled with variety and vitality that steered me away from an’s strict way of being. deviance encouraged me to open my eyes to the worlds beyond dominant discourse. the good throughout therapy, we listed good and bad foods and deconstructed the dichotomy. but an encompasses a greater good—a good that transcends food groups. as a means to healing, one might ask: what is your good? by listing synonyms, writing definitions, and/or drawing pictures of a more general good—one might become more aware of additionally constructed discourses and meanings. awareness of what is good, and the sources that construct that good, could empower the person and offer a starting point for change. personally, throughout recovery, i reconstructed my understanding of the good into a good—in which there were multiple goods. food became a good through sharing meals and as a medium for socialization. health became a good that meant taking care of my body. good varies from person to person; what’s good varies depending on relationship, community, and environment. but when a good transforms into thegood— the good becomes idealistic and dominant discourse. dominant discourse limits what’s good to one way—and exists as an ideology. like dominant discourse, the ideal exists unquestioned and just the way it is. these strategies call us to reflect on society—and more specifically, how an seems to embody even grander societal systems. the ideal the ideal seems to be our dreams, hopes, and wishes—the ultimate good. but it’s more than that. throughout history, the ideal has invited dividing societal practices. according to the image of objectivity,9 the ideal sets standards and expectations. julie hepworth10 in the social construction of anorexia nervosa makes sense of disordered eating practices as resultant from complex sets of standards and expectations. the ideal deems the perfect vs typical—and encourages striving for the perfect, the ideal, the one way, rather than recognizing possibilities. the perfect vs. typical serves as a dichotomy—a separating and other-ing tool; similar divisive practices seem alive and at work in an. throughout cmn 742: communication, pathology, and identity (spring 2016) course with dr. sheila mcnamee, the following concepts aided my continued recovery and helped make of sense an’s way of being in relationship with societal systems: discourse, deviance, ideal, policing, security, isolation, freedom, connection, control, blame, intelligence, and the coordination of multiplicities. policing societal systems have relied on policing to preserve the ideal. hepworth10 speaks to anorexia and policing one’s body as disciplinary practices of self-surveillance to preserve dominant discourses/norms. an might police by searching for fat, obsessively surveilling mirror/camera images of the body, exercising as punishment, etc. an’s policing practices reveal thinness as a dominant discourse; but in order for an to police, dividing practices must be exercised. [page 56] [qualitative research in medicine & healthcare 2017; 1:6367] article no nco mm er cia l u se on ly policing deems the virtuous vs non-virtuous.11 an deems specific parts of the self virtuous—such as (personally) active, disciplined, restrained; and other parts non-virtuous—such as (personally) lazy, rest, relaxation, dependence. policing one’s body implies policing one’s self— inviting self-polarization. within the self, we strive for consistency and coherence—in which our inner dialogue resonates with environmental discourses;7 therefore, the divided self invites a state of turmoil and chaos. in policing, with polarization comes elimination.11 policing has been exercised to eliminate the most destructive actions; which radicalizes an’s non-virtuous qualities as criminal. however, in singling out particular actions, we place a label on these actions—we limit these actions as non-virtuous, as criminal, when these actions might become virtuous in other contexts. regardless, policing requires the elimination of deemed actions, which invite further conflict, chaos, war, and ultimately defeat—within the self and body. we might recognize policing as not only a practice, but an overarching and encompassing term— a way of being. foucault12 refers to policing as a term whose meaning embraces all the process of human intercourse, exchange, circulation and cohabitation within a governed population—policing might fuel dividing, isolating, and ideal discourses to construct a particular way of being in the presence of an. in the presence of an, as illustrated above, i felt a serious internal struggle—as if something was wrong with me. something was wrong with me, and i couldn’t eliminate it. i strove towards goodness by policing my every action. down to the last bit of food in my mouth, to the extra skin on my stomach, to the way i answered questions in class—i was constantly policing towards perfection and couldn’t reach it. i was exhausted and defeated. this state of utter turmoil, failure, and confusion manifested in nightly terrors. when i fell asleep, non-virtuous and virtuous co-existed in vicious interactions of policing, combat, elimination, and defeat. security her body soaks into the sheets. that little bulge, that little addition to her. it hangs there, somewhat distant, alienated, on her lower stomach. it’s not supposed to be there. she tries not to look at it, but she gives in every time. is it still there? the comforter weaves between her legs, over and under her arms, across her back. it winds around her torso, the sheets disguise her; that extra bit of stomach folds into the sheets. it’s almost not a part of her anymore.. she wishes it would leave and attach to this blanket world. but it won’t leave her alone. *written in therapy other than to preserve and perpetuate the ideal, policing has served a more positive societal function— security.12 according to foucault,12 law depends and orients around security; which illustrates policing as an agent of security (by protecting the law). foucault12 explains that qualities like abundance, sustenance, and equality are all momentary—they may apply to that moment only. but security implies extension in point of time; a promise.12 i clung to an as security and promise— in which policing towards thinness and perfection would guarantee a better way of being. like policing towards civil responsibility guarantees a better way of being. maybe this promise, this extension beyond time, allows the body to endure the starvation state—in the understanding that, no matter the present moment’s condition, policing will ensure freedom from the non-virtuous. overall, a promise of security underlies an’s policing; which encourages someone to hold on, despite participation in a self-defeated way of being. isolation how do people become so inflexibly committed to a self-defeating way of being? let us place this question in the context of multi-being. as outlined earlier, normal life equips us with innumerable potentials for relating. however, in this case we confront people whose patterns of action are narrowly constrained. rich potentials remain unrealized. we often view such persons as problematic personalities: jack is aggressive; jill is a chronic depressive. this is to mistake the self of the moment for the potentials in waiting. if our potentials for action originate in relationship, so must we turn to relationship to understand the origins of constriction. there are two major forces at work in such cases. the first may be located in ongoing relations in which the person is immersed, and the second in the past history of relationship.7 hepworth10 explains an as a self-contained world— a world of isolation. isolation seems to defy gergen’s6 way of being which emphasizes the person as a multibeing; in which we are different selves with different people. potentials are infinite in relationship—existence in relationship ultimately gives rise to an enormous reservoir of inchoate potentials for action7 (p. 133). furthermore, the self is constructed through interaction, and we gain access to potential through these interactions. co-actions have the ability to shape, diminish, and expand potential— and these potentials create a sense of vitality in our lives.7 vitality comes from difference—the ways in which we coordinate, relate, interact and co-create life together; vitality comes from a confluence of these relationships in which one body houses multiple identities, voices, relationships.7 smothering the multi-being an deemed the ideal discourse virtuous and other discourses non-virtuous. although an deemed eating non-virtuous, other discourses said differently; for example, eating could be considered virtuous as a social activity in sharing [qualitative research in medicine & healthcare 2017; 1:6367] [page 57] article no nco mm er cia l u se on ly a meal. quietly, counter voices existed: voice #1 might grumble hunger cues, but an would interrupt and say it’s not legitimate. voice #2 might be a friend offering a cookie she just baked, wanting me to try it; but an invalidated that voice, too. in order for an to become that one, singular, authoritative voice—it had to be able to debate and counter every other voice and discourse. an had to be dominant. an bounded my being through isolation and the embodiment of dominant discourse. when an was present, i was not a multi-being. it’s voice was the only voice— and it remained dominant, unquestioned—demanding my obedience. i heard the other discourses, the other voices of family, friends, coworkers—but they were submissive. in an’s presence, i was not a daughter, a best friend, or a writer—i was not a multi-being. i was the ideal. according to the mayoclinic13 online medical dictionary, social withdrawal is an emotional and behavioral symptom of anorexia nervosa; which implies that isolation is prevalent in diagnosed cases of an. isolation, a seemingly common pattern in an’s presence, restricts, limits, and narrows not only eating habits but relationships. an felt most able and alive in isolation; in my particular case, i never had trouble eating with friends. but when i was alone. i wouldn’t eat. i’d restrict. coordinating with others invited alternate discourses—discourses that work to counter and degenerate an’s dominant reign. when with my friends, they would tell me to eat, or order us fries to share. i felt socially obligated to participate in the feeding process with my friends; i wanted to participate—i wanted to coordinate my actions and align with people i loved. an depended on limiting relationships, potentials, and anything unknown in order to preserve the ideal. while preserving an, i squandered difference. according to gergen, difference creates life, meaning, and vitality.7 through isolation, an distanced and detached me from society, meaning-making, and vitality. the following is a step-by-step illustration of how isolation might manifest in a self-defeated way of being. i created this formula to visualize the connections between co-action, potentials, vitality—and ultimately, self-defeat: 1) co-action shapes, diminishes, expands potentials 2) limit co-action=limit potentials 3) limited potentials=limited vitality 4) limited potentials+limited vitality=self-defeating pattern although distancing, isolation is active and participates with society. isolation as coming into oneself is not an individual act—it’s a social act of distancing oneself from society and the other. an could be explored as an embodiment of the ideal—in which it exercises systems such as division and isolation as a means to preservation. an could be explored as a rejection of society—in which isolation attempts to remove the individual from society. an seems to both embody and reject an ideal; striving for the black vs. white, either/or philosophy—diminishing difference. in this manner, isolation interacts degeneratively (it limits and restricts coordinated actions). conceptual reconstructions i offer reconstructions of cultural concepts meant to discourage an’s way of being. control generally, society has practiced policing and isolation as a means of control to preserve ideals. however, the cultural emphasis on control seems to have created a paradox between freedom and connection. the individualistic perspective understands freedom as free from others— free from their wishes, wants, demands—which exercises divisive practices (self from others). but as human beings, we long to connect. in an individualist society, we also praise independence. independence invites elements of separation and control to find a way of being in the world independent from others. the struggle for independence and control seems most prevalent during adolescence—illustrated through the statistic about one out of every one-hundred young women between ten and twenty are starving themselves14—an age of becoming independent. an has been understood as a denial of autonomy or regression into childhood where the physical body remains childlike and underdeveloped (starved).10 there’s an interesting paradox in an as well—with an, one might deny food as a means to independence; however, in the end, this practice usually renders the person more dependent than ever.10 historically, the heavy-weighted discourse of control seems to rule, confuse, and further perpetuate oppressive systems. i drew this picture (figure 1) in therapy. grounded but wild/free speaks to my struggle for control. roots connect my feet to the ground and imply a desire for belonging; but my head is with the leaves that fly free in the wind— i also yearn for freedom (figure 2). so how does one be free from others, yet fulfill the human desire for connection? lightening the cultural emphasis on control might empower the individual in developing his/her way of being through a balance of agency and obligation. shifting our focus from control to finding a more fulfilling way of being might also ease the discomfort in change, difference, and environmental shifts. also, by learning to find comfort in uncomfortable situations, we might loosen our grip on control. maybe life should be yoga if we approached life like yoga, or a wave, it might be easier. whether it’s yoga or surfing, we put ourselves in uncomfortable situations– a twisted pose or the face of a monster swell. but we deal with it. with breathing, or sheer panic, we learn to overcome that discomfort– to maybe even take advantage of it, to take it for a ride. we work with [page 58] [qualitative research in medicine & healthcare 2017; 1:6367] article no nco mm er cia l u se on ly it. we find ways of being with it—discomfort. uncomfortable, unpredictable, uncontrollable. situations that might steer us clear of dangerous, cyclical patterns. comforting cycles that form habits and zones and limit us– limit our vitality. in uncomfortable situations, we have to accept changes, problem solve, and go with the flow–opportunities for diverse thinkings and re-creations in order to survive. and with these diversities, comes vitality. *written in distance and recovery from an; letting go of control as a society, we could shift our focus from control to finding a more fulfilling way of being in society. by shifting my emphasis from control to finding a more fulfilling way of being, i began to realize the ways in which i was connected but free. i try to conceptualize my self as a leaf— attached to the branch, yet flowing freely in the wind. with this understanding i am somewhat connected and somewhat free. i’ve grown away from control and towards an awareness of agency and obligation when attending to my environment; in which a fulfilling way of being strives for balance between the two. i strive for a balance between the branch and the wind. and if flowing free means breaking free—i might eventually come full circle: settling in the ground to nourish a future tree. for example, i struggled with guilt when leaving my family in minnesota for college in new hampshire; but really, i was meant to share the adventure with my family through pictures, phone calls, and visits. all in dynamic balance; free, but in connection. i continue to strive for this dynamic balance between agency and obligation within my environment. maybe freedom could be understood as moving in connection with others and our environments—an ease in breathing, letting things go, letting things in. in the international journal of eating disorders, tozzi et al.15 discover perceived pressures and stressful experiences as common causes of eating disorders. although i intend to stray from determining the causes of an, i believe these findings offer insight into grander societal systems and how they construct environments. as a people pleaser, i’ve been highly susceptible to perceived pressures and stressful experiences; i’ve perpetuated societal discourses that demand people pleasing women. trying to please people and attend to assumed/stated needs creates a complex reality of pressures, standards, and expectations known to fuel eating disorders. this way of being would not be encouraged by a balanced sense of agency and obligation. as a people-pleaser, i had completely abandoned agency and lived for obligation—i lived submissively. this way of being invited the dominance of an. mother and daughter hepworth10 speaks to the blame that’s been cast on the mother-daughter relationship. an studies have concluded that mothers who are too involved with their daughters amplify the likelihood of an. these studies claim that a mother’s ‘over involvement’ creates a radical, internal struggle of independence within the daughter; in which the daughter struggles to break free from the mother and find her own way of being in the world. an awareness of individualism, independence, control, and freedom as culturally-constructed reveal that this conclusion is culturally-coded. my experience disproves this theory; i don’t believe my mother was overly involved. especially in comparison with my friends’ moms, my aunts as mothers, and my grandmother as a mother. although my mom stayed at home, she valued raising my brother and me with a high sense of responsibility; in which we were responsible for multiple duties at a young age—getting homework done, waking up in the morning, making our own lunches, walking the dog. later, around the time of her divorce, she struggled with depression and was not readily available; high school graduation and college application duties became my responsibilities. but on a grander scale, the ratio of over-involved mothers seems to outweigh the number of an patients. regardless, the conclusion continues to hold weight. focusing on and isolating the mother-daughter relationship ignores various other factors; so we might widen our gaze. studies have expanded in acknowledgement of the father-daughter relationship and eating disorders in [qualitative research in medicine & healthcare 2017; 1:6367] [page 59] article figure 2. picture drawn in therapy meant to depict a better self. no nco mm er cia l u se on ly males16—but i suggest going further. instead of peering into the mother (or father) → daughter (or son) relationship and the proceeding daughter/son → world relationship, we might broaden our view to recognize a more general, dramatic shift in environments. we could explore the overall extremity of an environmental switch—where infinite factors and external pressures are involved. environmental shifts might not entail moving physically; but environments change when the people, values, beliefs, and discourses around us change. we could become more aware of what transpires within a dramatic, environmental change (figure 3). intelligence medscape17 features a study, as the compilation of studies, titled higher iq found in patients with anorexia nervosa. the study asked the question—do people with an have a higher iq than the general population? 30 peer-reviewed studies claimed that people with an scored 10.8 – 5.9 units above the normal population’s iq.17 throughout therapy, the discourse of an as intelligent circulated throughout the clinic; i took pride in this trait. but what is intelligence? our cultural understanding of intelligence implies the prioritization of and adherence to empirical knowledge;18 a system that reflects in an’s way of being. garner8 interprets the typical superior academic performance of an patients as overcompliant adaptation; dedication to the empirical way could be understood as perfectionism—which as mentioned, demands obedience to dominant discourse. anything other than perfect/dominant is not perfect, and not okay. garner8 understands perfectionism in an as part of a dichotomous thinking style. this black vs white, all-or-nothing thinking style seems to mimic dominant discourses that rule an.8 my strict and rigid habits implied adherence to empiricism and overcompliant adaptation to dominant discourse (not necessarily the content of dominant discourse, but an imitation of the processes in which it prevails). i now have a different understanding of intelligence—as practical wisdom. what if those living with an were encouraged to practice practical wisdom in problem solving? practical wisdom seems to encourage creativity and appreciation for a grand variety of solutions. if we valued practical wisdom as intelligence, we could open up the door for many goods. if we enabled practical wisdom, we might enable alternate discourses—to develop and broaden societal norms (goods). deviance an as obedient to empiricism might manifest itself in culturally-coded concepts of intelligence and deviance. hepworth10 speaks to the deviance of those living with an. rather than focusing on the means by which an might deceive therapists, family, friends—we might more deeply understand this ‘deviance’ not as malicious, but as the same prioritization and strict adherence to empiricism associated with intelligence. as mentioned, dominant discourse suppresses alternative discourses; the dominant presence of an as the one way, the only way, doesn’t allow for mom’s voice, friend’s voice, or anyone else’s voice. an doesn’t allow for the coordination of multiplicities. when confronted with difference, we tend to seek consensus—which has its problems.19 consensus seeks common ground through negotiation and usually settles on smaller, light-weight issues rather than confront the larger areas where people are more heavily and passionately invested.19 to approach difference through the lens of coordinated multiplicities, we attempt to coordinate multiple discourses in which there’s not one solution—but multiple solutions, even multi-dimensional solutions, that honor the variety in values, beliefs, and ideas.19 the goal is to find more deeply understand values and beliefs and the practices that manifest.19 what would happen if an was confronted by the coordination of multiplicities? how can we use these concepts to create ways of being that discourage an and destructive societal systems it perpetuates? another way of being the worst usually, her dreams scare her. she’s afraid to go to bed, to fall asleep. her stomach grumbles and she squanders it with blankets, hoping it won’t wake her roommate. she shakes a little while she waits. she tries to picture herself cradled in god’s hands—comforted by a swaying lullaby. but once she crosses that realm into blackness, his hands gently slip away. all of a sudden, she’s looking down at herself from above. she’s wrapped in a white hospital robe—tied at the neck and open in the back, revealing a bony, bumpy spine. [page 60] [qualitative research in medicine & healthcare 2017; 1:6367] article figure 3. picture drawn in therapy of my mom. no nco mm er cia l u se on ly she’s sitting on a bed in a white-walled room. her hands grip the sheets beneath the tendons of her knees, and her legs kick anxiously. her pupils dilate and look nervously from side to side. her eyes and teeth are sunken deep and yellowish. the corners of her lips turn slightly upward, in a sheepish grin. she stands on the bed. her knees bend then spontaneously expand— in an estranged jump. she giggles maliciously, jumping on the bed. a lab-coated doctor enters. the girl runs in circles, surrounding the bed. she runs and screams and the noise shrivels the ear canals of the doctor. and her mom, now in the room. the girl from above squirms at the raw intensity. *written in starvation an transcended my conscious self—it permeated my dreams and deepest thoughts. i had nightly terrors of being shot, sexually assaulted, and the devil breathing. according to elkins,20 an goes beyond the dominant discourses of beauty and normalcy— these qualities have only been considered anorectic and medically important in the last couple centuries. basically, an existed before skinny was the new pretty. an seems to embody the how and why of dominant discourse—through the ways in which both have prevailed throughout history. in the 16th-18th century, an was considered a medical condition unrelated to beauty.10 in the 5th-13th century, it was considered a divine intervention and miracle.10 an has existed throughout time and under various ideals of beauty; furthermore, an has existed as means toward and away from societal ideals. therefore, an could be explored as deviance and embodiment; overall, it participates with society. multiple explanations1,2,10 present an as the struggle to find a way of being in the world; whether in separation from the mother, becoming an autonomous adult, rejecting independence, or a more general confusion about his/her place in society. gergen7 and mcnamee19 offer a way of being that involves the coordination of multiplicities—i began utilizing this concept in subtle ways before reading their material, and it significantly aided my continued recovery and development of a better way of being in society (figure 4). it gets better when an is a product of and agent within the environment, i am a flower—and my health is dependent on [qualitative research in medicine & healthcare 2017; 1:6367] [page 61] article figure 4. one of many thematic, therapeutic drawings while in recovery. no nco mm er cia l u se on ly the infinite atmospheric variables surrounding me. recovery came to mean recreating my environment—incorporating those ‘check and balance’ discourses in collaboration with dominant discourse. above, although the roots are crazy, and different, and don’t seem to belong—they fit together. they make it work; and they make an awesome image. by coordinating multiplicities, we can construct another way of being open to potential and vitality. a way of being that involves various goods, ideas, meanings— for example, i came to realize the variety of meanings involved in food. i expanded my understanding of food as individual consumption to communal participation—in which a best friend who wanted to get dinner was more important than being small or restricting or perfection. food became justifiable. furthermore, i became aware of the other presences that fed my soul like the isolating presence of an never could. the coordination of multiplicities allowed me to develop a variety of goods, broaden experiences, and increase relationships; it constructed a more generative way of being. the coordination of multiplicities was one of my greatest aids in continued recovery and served as a generative antidote to a self-defeated way of being.6 furthermore, this reconstruction does not call us to obliterate or eliminate the voice of an. i am constantly working to balance discourses, but i’ve experienced new ways of being not as concerned with an; these experiences have revealed unlimited potentials and inspiration for alternatives. we are called to keep an in conversation, but also to question— in order to move away from heavyweighted dominant discourses in which an thrives. conclusions i hope that my story makes sense for those consumed by the demands of an—and that he/she might be able to use similar tools in the creation of a way of being fueled by the coordination of multiplicities. references 1. lock a, epston d, maisel r. countering that which is called anorexia. narrative inquiry 2004;14:275-301. 2. chatham-carpenter a. ‘do thyself no harm’: protecting ourselves as autoethnographers. j res pract 2010;6:m1. 3. water’s edge counseling and healing center. intensive outpatient programs for adolescents and adults. burnsville, mn: water’s edge counseling and healing center; 2017. 4. media education foundation. killing us softly 4. media education foundation, northampton, ma, usa: media education foundation; 2016. 5. sontag s. on photography. london: macmillan; 1977. 6. gergen kj. therapeutic challenges of multi-being. j fam ther 2008;30:335-50. 7. gergen kj. relational being: beyond self and community. oxford: oxford university press; 2009. 8. garner dm, olmstead mp, polivy j. development and validation of a multidimensional eating disorder inventory for anorexia nervosa and bulimia. int j eat dis 1983;2:15-34. 9. daston l, galison p. the image of objectivity. representations 1992;40:81-128. 10. hepworth j. the social construction of anorexia nervosa. j commun appl soc psych 1999;9:478-80. 11. comaroff ja. criminal obsessions, after foucault: postcoloniality, policing, and the metaphysics of disorder. critic inquiry 2004;30:800-24. 12. foucault m, burchell g, gordon c, miller p. the foucault effect: studies in govern mentality. chicago, il, usa: university of chicago press; 1991. 13. mayo clinic. scottsdale, az, usa: mayo foundation for medical education and research; 2017. symptoms and causes – anorexia nervosa; 2017. available from: http://www. mayoclinic.org/diseases-conditions/anorexia/symptomscauses/dxc-20179513 14. rubel j. eating disorder statistics. anorexia nervosa & related eating disorders. available from: https://www.anred.com 15. tozzi f, sullivan pf, fear jl, et al. causes and recovery in anorexia nervosa: the patient’s perspective. int j eat dis 2003;33:143-54. 16. hodges n. weighing ourselves down. depart crit qual res 2015;4:51-69. 17. kreimer s. higher iq found in patients with anorexia nervosa. new york, ny, usa: medscape; 2010. available from: http://www.medscape.com/viewarticle/734950 18. semin gr, gergen kj. everyday understanding: social and scientific implications. in: gr semin, kj gergen (eds.) everyday understanding: social and scientific implications, pp.1-18. newcastle upon tyne: sage; 1990. 19. mcnamee s. transformative dialogue: coordinating conflicting moralities. the lindberg lecture. 2008. available from: http://pubpages.unh.edu/~smcnamee/dialogue_and_ transformation/lindbergpub2008.pdf 20. elkins j. pictures of the body: pain and metamorphosis. stanford, ca, usa: stanford university press; 1999. [page 62] [qualitative research in medicine & healthcare 2017; 1:6367] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2022; 6:10437] [page 1] introduction in december 9, 2021, the new york times ran an article with this gripping headline: “where the despairing log on, and learn ways to die.”1 the topic is a “pro-suicide” website called sanctioned suicide, which the authors deem responsible for more than 500 deaths worldwide since its creation in 2018 (roughly two deaths per week, the authors tell readers). sanctioned suicide is a place where users post suicide means and methods, solicit suicide partners, post suicide timelines, and in extreme cases, share links to live broadcasts of “real live” suicide, also known as “deathcasting.”2 to date, attempts by grieving family members to track the site creators, who go by the alias “marquis” and “serge,” and shut down the site have met little success. the new york times coverage of sanctioned suicide is noteworthy because it concretizes longstanding concerns about the internet’s possible role in driving upward trends in suicide. (like baym and markham, i do not spell “internet” with an upper-case “i” because doing so would suggest that the internet is a specific place or an agentic/monolithic being.)3 according to the world health organization (who), more than 700,000 people end their lives across the globe every year (who, suicide prevention. accessed 02/03/2022: https://www.who.int /healthtopics/suicide#tab=tab_1). for each death by suicide, an additional 20 people attempt suicide, totaling 14 million suicide attempts annually worldwide. in the united states, the number of suicide deaths jumped from 30,000 in the year 2000 to 49,000 in 2020; when adjusted for population growth, this represents a non-trivial leap from 10.4 to 14 per 100,000 over a twenty-year period.4 the time frame overlaps with the advent of web 2.0 and the diffu“life is about trying to find a better place to live”: discourses of dwelling in a pro-recovery suicide forum mike alvarez department of communication, university of new hampshire, durham, nh, usa abstract in the two decades since the advent of web 2.0, scholars of cybersuicide have identified many beneficial and harmful uses of the internet. however, the discursive meanings interactionally created by suicide website users have scarcely been attended to. the present study uses the theory and method of cultural discourse analysis (cuda) to arrive at meanings about place that radiate from online communication among users of suicideforum.com (sf), a pro-recovery website. analyses of 2,119 posts across 131 threads reveal two overarching discursive themes. the first speaks to problematic discourses about place, including the role of placelessness and entrapment in the genesis of suicidality and its affective states, leading to further diminution of experiential worlds. the second theme taps into participants’ notions of what constitutes safe spaces, such as the presence of empathetic others who respect one’s timetable for personal disclosure, and the freedom to experiment with new ways of inhabiting the world. the study has numerous implications for clinical practice, including recasting psychological disturbances in terms of self-world relations and reconsidering involuntary psychiatric hospitalization in light of forum participants’ preoccupation with entrapment. correspondence: mike alvarez, department of communication, university of new hampshire, horton social science center, 20 academic way, durham, nh, 03824 usa. tel.: 413.341.2339. e-mail: mike.alvarez@unh.edu key words: internet; suicide; digital media; cybersuicide; cultural discourse analysis; ethnography of communication. conflict of interest: the author declares no conflict of interest. acknowledgments: the author would like to thank donal carbaugh, martin norden, and daphne patai for prior comments on different portions of the article. i would also like to thank the anonymous reviewers for their feedback and time. any errors that remain are my own. availability of data and materials: all data generated or analyzed during this study are included in this published article. ethics approval and consent to participate: not applicable. informed consent: not applicable. received for publication: 2 march 2022. accepted for publication: 27 march 2022. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2022 licensee pagepress, italy qualitative research in medicine & healthcare 2022; 6:10437 doi:10.4081/qrmh.2022.10437 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. qualitative research in medicine & healthcare 2022; volume 6:10437 no nco mm er cia l u se on ly sion and penetration of digital and mobile media into myriad arenas of social life. the harmful content, contexts, and uses of digital media and the internet are manifold. these include prosuicide message boards like sanctioned suicide where the desire for death goes largely unchallenged, online suicide manuals which provide “tips” and “tricks” for enacting self-harm,5 net suicide pacts where two or more strangers on the web agree on a physical place and/or time to end their lives together,6,7 suicide due to cyberbullying, or “bullycide,” which extends the temporal and spatial reach of malicious behavior,8 and, as mentioned above, deathcasting, the live broadcasting of one’s suicide which is frequently goaded by other users’ incendiary messages.9 these specific instances tap into more general concerns about the explosion and accessibility of triggering content on the web and the disinhibitory effect of online communication on risk behavior. but as i have written elsewhere, “for every destructive potential of the internet, there is a corresponding constructive potential.”10 in the arena of suicide prevention, these include formal and informal message boards with a pro-recovery orientation,11 support groups within existing social networking sites (sns) like facebook,12 online delivery of psychological treatment to vulnerable and hard-to-reach groups,13 dissemination of empirically validated information such as warning signs, risk factors, and treatment options,14 and online gatekeeper training programs which prepare professionals to “question, persuade, and refer” suicidal people they are likely to come across.15 such applications tap into hopes that technology could augment efforts to identify, educate, and extend aid to vulnerable populations and the people entrusted with their care. research on suicide and the internet has largely operated from a benefits/harm paradigm,16 which reflects the monopoly of the “psy” disciplines (i.e. psychology and psychiatry) on the study of cybersuicide. in most studies of cybersuicide, the unit of analysis is typically the individual, who is presumed to be afflicted with an underlying pathology, and the internet, in turn, is viewed as a double-edged tool that can prevent or promote suicide. although the “psy” disciplines have advanced our understanding of the promises and pitfalls of digital technologies in the realm of suicidality,17,18 it has excluded end users’ perspectives and meanings. this is in line with criticisms leveled at mainstream suicidology by scholars and practitioners of critical suicidology19 – in particular, the former’s disavowal of suicidal individuals’ lived experience and the qualitative and interpretive methods that make those experiences humanly intelligible. the present study is a modest endeavor to arrive at meanings about place, including cyberspace and symbolic space, that are discursively created by users of a pro-recovery suicide forum and the implications of these meanings for clinical and therapeutic practice. without eschewing utopian hopes and dystopian fears about the internet, i attend to the medium’s syntopian capacity for meaning generation,20 and heed the call to treat online mental health forums as discursive communities,21 thus shifting the focus away from the pathologized individual as the unit of analysis. furthermore, i conceive of internet users as agents who utilize the affordances of web platforms (as opposed to passive recipients of beneficial or harmful content) and the internet as a heterogeneous space (as opposed to a mere tool) in which discursive communities co-create meanings about their communicative worlds.22 in what follows, i first provide an overview of the conceptual framework (specifically, the theory and method of cultural discourse analysis), the communication scene in question, and procedures for collecting and analyzing data. i then present interpretive findings in two parts: part i probes the notion of suicidality as failure in dwelling, and part ii explores the qualities that constitute safe spaces from forum participants’ discursive point of view. i conclude with a discussion of the study’s main findings, contributions to research and clinical practice, and avenues for future exploration. materials and methods conceptual framework there have been many attempts to identify the paradigmatic dimensions of “community,” especially online community. moores argues that a sense of belonging is key and, citing castells, adds shared initiatives, values, affinities, and projects.23 willson postulates four key dimensions, including bonding (which is synonymous with moores’ belonging), reciprocity (the joint solicitation and offering of support), commonality (the perception of similarity), and intersubjective identity (an identity possessed by the whole community, distinct from yet contributing to individual identity).24 baym concurs with willson’s intersubjective identity (which she calls “shared identity”) and adds shared practices, shared resources, and interpersonal relations.25 finally, meyers asserts that a bounded space, be it physical or virtual, is crucial to community, along with interpretive strategies that align one’s values with the group.26 though a more exhaustive treatment of community is beyond the scope of the present study, this overview serves as a useful starting point for exploring the culture of a community, and the role of communication in constituting community and culture. the present study takes up the call to extend the assignation of “culture” to groups and entities not previously considered as such.27 thus, i view “suicidal” persons as a cultural rather than a diagnostic category and the suicidal users of a pro-recovery forum as members of a discursive community,28 defined here as a group of people whose communicative practices underlie common values, beliefs, and strategies at meaning-making. (throughout, i use the term “discourse” to refer to multi-utterance units of talk, and “discursive practices” to call attention to the [page 2] [qualitative research in medicine & healthcare 2022; 6:10437] article no nco mm er cia l u se on ly idea that talk is an activity that has many different parts.)29 moreover, i adopt carbaugh’s four-part communication definition of culture, which sees culture as i) an expressive system, ii) of symbols and symbolic forms, iii) that are meaningful to participants in situated contexts, and iv) are transmitted by members over time.30 this definition dislodges culture from the constraints of geographical space, allowing productive application of the concept to virtual contexts. this definition also calls attention to the constitutive role of communication, without which cultures and communities would not exist. methodologically, i use cultural discourse analysis (cuda), a powerful tool for theorizing, describing, and interpreting communicative practices and their meanings to those who engage in them.31 cuda has a rich theoretical lineage that includes the ethnography of communication,27 which sees communication as locally shaped, and the theory of cultural communication,32 which attends to the “membering” functions of social interaction. building upon its predecessors, cuda operates under two key assumptions: i) that communication is particular to places and varies from one context to the next; and ii) that members of a discursive community actualize their social lives through the communicative practices in place.33 from the standpoint of cuda, communicative practices are imbued with deeply meaningful messages called “cultural discourses.” when members of a discursive community speak, they are not merely stating something about the topic at hand. they are engaging in metacultural commentary about how to act, how to feel, how to relate to others, how to be, and how to inhabit the world. carbaugh calls these “radiants of meaning” – acting, feeling, relating, being, and dwelling, respectively – and they are invoked whenever “discursive hubs” are used.30 “hubs” are the explicit units of analysis and “radiants” are the implicit meanings; the two are inseparable. to provide one example: in a previous study of online communication among people who engage in routine non-suicidal self-injury (nssi), i tracked usage of the terms “self-harm” and “self-injury” (discursive hubs of action in cuda’s parlance), and in the process, arrived at participant meanings about self-harm as crisis management (radiant of feeling), relational maintenance and control (relating), and punitive self-discipline (acting and being).15 discursive hubs assume many guises, including, but not limited to, terms, phrases, images, gestures, symbols, and symbolic forms (e.g. ritual, myth, social drama). frequency of invocation is but one marker of a hub’s potency and meaningfulness; other considerations include emphatic usage, particularity of usage, mutual intelligibility, and accessibility to participants. a hub need not be affiliated with only one radiant of meaning because a single hub can activate multiple radiants at once, as the above example shows. hubs can also work singly or jointly to activate meaning, but not all hubs/radiants are relevant or salient in every communicative scene. in the thirty years since its inception, cuda has been fruitfully applied to a wide range of communicative practices and discursive communities across the globe (see the anthology by scollo and milburn),34 including users of web platforms and online mental health communities.9,15,35 these applications demonstrate cuda’s reach in explicating diverse communicative phenomena and broadening our understanding of how cultural meanings are produced through talk of various kinds. the communication scene this article is based on a larger ethnographic study of suicideforum.com (sf) – one of the largest pro-recovery websites in existence, housing more than 150,000 discussion threads, two million posts, and 53,000 registered members worldwide since its creation in 2005. though registration is required to participate in threads, it is not necessary to access much of the site’s content; registration is free and does not require personal information. and while sf has a global user base, communication in the site is primarily in english. sf describes itself as a “peer to peer community support forum and chatroom for people in need,” and it adheres strictly to a “do no harm, promote no harm principle” (suicide forum, mission statement, accessed 02/03/2022: www.suicideforum.com/about-sf/). members are free to discuss their past and present struggles with suicide, provided that they do so in a non-triggering manner (e.g. avoiding minute details of prior attempts). members are prohibited from sharing suicide methods, soliciting suicide partners, posting suicide plans and timelines, encouraging others’ plans, and dissuading others from seeking formal treatment and support. committing any of these infractions results in immediate account termination. unlike sanctioned suicide in this article’s introduction sf is expressly pro-recovery; members are committed to improving their mental health, to contributing positively to others’ mental health, and to providing informal support online as a complement (rather than substitute) to formal treatment received elsewhere. additionally, sf provides links to crisis websites and numbers for crisis hotlines for 80 countries and territories as well as reference materials on various mental health struggles. sf is neither run nor moderated by an organization, but is staffed by former members who volunteer their time as administrators. their responsibilities include monitoring threads and redacting messages with objectionable content, imposing sanctions for infractions, responding to member queries, and keeping the site running. the site’s operations are supported entirely by donations covering server costs, licensing fees, and security updates. data collection and analysis as mentioned, this study is part of a much larger ethnographic study on sf. i spent an initial seven months [qualitative research in medicine & healthcare 2022; 6:10437] [page 3] article no nco mm er cia l u se on ly browsing sf to familiarize myself with the site’s technical affordances, layout and design, content, rules of conduct, and norms of interaction. i then conducted an additional thirty weeks of non-participant observation, during which i utilized hymes’s descriptive theory to understand the individual components of the “communication scene”27 and how the website’s discursive architecture, as a whole, structures the meanings created therein. these observations were recorded via field notes and scratch notes. more relevant to the present study, i also collected and analyzed a purposive sample of 2,119 posts across 131 threads during the thirty-week period. i did not set an a priori number of posts to collect, as that would go against cuda’s spirit of discovery and immersion; instead, i made sure to draw from every major section of the forums during the study’s time frame. these sections were: new members, suicidal thoughts and feelings, road to recovery, let it all out, support and advice, you are not alone, and the gathering. the posts amount to 683 transcript pages, which constitute the data corpus for this study. i did not use data scraping software in order to preserve the message structure of threads. all threads were printed to facilitate hand coding which i conducted myself. using cuda, i systematically tracked sf members’ usage of “suicide” (a discursive hub of action) and “suicidal” (a discursive hub of emotion and personhood) in order to arrive at corresponding radiants of meaning. for analytical purposes, “suicide” and “suicidal,” and their more colloquial variants, like “killing myself” and “throwing in the towel,” constitute the primary hubs. i probed the transcript for each of the five radiants (being, relating, acting, feeling, dwelling) one by one, formulating a research question for each. for the radiant of dwelling, the focus of this article, i posed the question: what meanings about place are discursively constructed by suicideforum members in their online communication about suicide? because hubs can activate other hubs, i also tracked discursive hubs of place that were invoked by members in reference to “suicide” and “suicidal.” after all, verbal or written depictions of place are not merely descriptive, but suggest ways of relating to that place. these secondary hubs include “world,” “nowhere,” “home,” “safe place,” “safe space,” “here,” “sf,” “this forum,” and “this site.” i conducted multiple rounds of coding for each radiant, including dwelling. in cuda’s parlance, interpretive accounts may take the form of “cultural premises,” which are abstract formulations of participants’ taken-forgranted knowledge and beliefs about the way things are, and/or the way things ought to be.30 drawing on the aforementioned study of non-suicidal self-injury, an example of a cultural premise would be: self-harm disciplines the uncooperative body and manages intense feelings temporarily.15 in the present study’s initial coding stage, i generated as many cultural premises as possible based on recurring patterns in the transcript. next, i reviewed the transcript to verify these cultural premises, identify new premises that i previously missed, check for discrepancies, and combine similar premises. in the final stage, i grouped together related cultural premises to identify overarching discursive themes and sub-themes, resulting in two grand discourses – one relating to problematic places, the other to safe spaces (more on these ahead). ethical considerations before i present my findings, some words about ethics are in order. this study does not meet the institutional definition of human subjects research because neither intervention nor interaction with members of the sf community took place and because analysis was restricted to extant data on publicly available threads with heavy user traffic. moreover, sf prohibits members from using real-life photos as avatars, from using real names as handles, and from reusing handles associated with other online accounts. thus, individual posts are not linked to personally identifying information, and throughout data collection and analysis, i encountered no evidence to the contrary. in short, transcripts are already anonymized. another concern relates to the ethical and legal responsibilities of researchers should they encounter distressing information.36 as i mentioned, sf abides by a “do no harm, promote no harm” principle that it strictly enforces; i did not encounter posts in which there is imminent threat to group or individual safety and warranted intervention on my part. results sf members’ online communication reveals two overarching sets of discourses about dwelling which i address in the following two sections. in the first section, i explore the notion of suicidality as failure in dwelling, from which three related sub-themes emerge: i) problematic relations to place (i.e. placelessness and entrapment) that produce suicidal crisis, ii) the expansion and constriction of perceived space brought forth by suicidality, and iii) the creation of and retreat to symbolic spaces as escape from problematic places. in the second section, i unravel sf members’ notions of a “safe” space, the people who inhabit such a space, its temporal and spatial boundaries, and how the discursive space of sf exhibits these desired qualities. i present interpretive findings as cultural premises (italicized throughout), which are supported by brief excerpts from the transcript. part i: suicidality as failure in dwelling relation to place as precursor to suicide it is apparent from sf members’ messages to one another that a problematic relationship to place can provoke suicidality, though the nature of this relationship varies [page 4] [qualitative research in medicine & healthcare 2022; 6:10437] article no nco mm er cia l u se on ly from person to person. for some members, the issue is a sense of entrapment in a place that is anathema to survival. the precipitating environment has been described as “hostile,” “alien,” and “uninhabitable,” and includes places that others typically associate with warmth and safety such as the school or the home. recalling the days of his/her youth during which s/he was chronically suicidal, one user writes, “i was profoundly alone in a world of evil vindictive children, teachers, and parents,” while another user, who claims to have been “abused at school, tortured at home,” writes of “having nowhere safe to be” (italics added here and below for emphasis; spelling and grammatical errors in user posts have been preserved.) in these examples, the negative qualities of relational space are extrapolated to the rest of the world, heightening the sense of inescapability. although extrication from the precipitating environment may alleviate thoughts and feelings of suicide, it is not always possible due to relations of dependence that keep one in place, as is the case for underage minors, students who rely financially on their parents, or spouses without means of making a living. not every sf member is a recipient of chronic mistreatment and abuse, but even those without an apparent history of trauma may invoke a sense of entrapment in their posts. in other words, entrapment is not contingent upon a traumatic social milieu. one user captures this feeling when s/he writes, “i was going nowhere and i basically dug my life into a hole….”. expressing their sympathies, another writes: i know what you mean. still in the looping life you don’t want and not able to shift into getting the help that you need, including helping yourself. those moments where you have the idea of what you need to do but you are in the quicksand of the situation and you think you need superhuman strength and the willpower it would take to pull a tree up by the roots in order to do it. the invocation of “looping life” in the above post speaks volumes, for it suggests being stuck in place revisiting the same dramas. the “quicksand” metaphor adds to the feeling of inextricability by invoking the sensation that one is slowly but surely sinking, even when the path to freedom is painfully in sight. for other sf users, it is not a sense of entrapment, but its dialectical opposite, the feeling of being unsettled, displaced, and without place that is the source of much anguish. one member who had spent years in jail cites “homelessness” as a precursor to a suicide attempt. in his statement, “i had nowhere to go,” alludes not to being stuck in place, but to having no place to be; not to problematic emplacement, but to alienating displacement. another sf user compares him/herself to a “giraffe in space…not sure how i got here and probably can’t get back to earth on my own.” by comparing oneself to a helpless animal, and by conjuring the vastness of outer space, the user appears to be drifting aimlessly in the world, without the power to alter his/her trajectory. in both examples, the sense of placelessness is discursively linked to a directionless life. placelessness may also be expressed in terms of incompatibility between self and world, as the following two extracts illustrate: still don’t really want to be alive but i’m [no longer] suicidal, it’s more boredom that i can’t function in the real world so i sit at home without a thing to do, just sick of it. the future is just so unclear and unsure for me, idk [i don’t know] if i have a place in it or for how long i can keep up or if i can even make it. both users have a history of suicidality, but were not actively suicidal when they posted the above messages. both users also evoke the sense that they do not belong in the world (“idk if i have a place in it”), whose demands exceed the users’ capacity to function (“can’t function in the real world”). despite their surface differences, a feeling of entrapment, and a feeling of placelessness, both indicate that the person is not where s/he ought to be. to paraphrase, the disjuncture between the place where one is (or is not), and the place where one should be, can be a source of despair. suicidality’s impact on place so far, i have explored the discursive links between a fraught relationship to place and suicidality. that relationship, however, is not uni-directional; it is reciprocal. just as place influences affect, affect also influences perception of place. thus, we must also attend to how affective states associated with suicidality influence the perception and experience of place, from sf users’ discursive point of view. the above cultural premise is most apparent in members’ characterization of depression. for many sf users depression is auratic, enveloping the person wherever s/he may go. wrote one user: “a constant low level depression follows me and sometimes really rises up and feels overwhelming.” for this user, depression contracts (“low level”) and expands (“rises up”) to unbearable levels (“feels overwhelming”). depression taints perception of the world, and it is not surprising that sf members describe depression in spatial terms. one member likened depression to a “long and dark tunnel,” without a foreseeable end in sight, while another compared it to being at the center of a cyclone or storm. in both examples, there is a sense of engulfment as well as entrapment, which we also find in these data strips: “i’m in a dark place,” “between a rock and a hard place right now,” “i have reached rock bottom,” “i am in such a pit.” [qualitative research in medicine & healthcare 2022; 6:10437] [page 5] article no nco mm er cia l u se on ly from these examples, a curious dialectic of expansion and constriction emerges. negative affect engulfs the person, which results in the diminution of space, producing a sense of inescapability. to paraphrase, negative affect expands out into the world which causes that world to shrink for the suicidal person. the dialectic finds parallel in the dialectic of entrapment and placelessness i mentioned previously. i should note, however, that this cultural premise is not limited to depressed mood. after all, suicidality is neither synonymous with nor reducible to depression. suicidality implicates multiple affective states other than depression, including but not limited to fear, anger, rage, and even boredom.34 as a case in point, one sf user suffers from anxiety so debilitating that it has enveloped his/her entire world, greatly reducing the parameters of navigable space: “i had a nervous breakdown and lived in my closet for four months until i couldn’t take the pain any longer.” at its most extreme, suicidality can disrupt indwelling, or the habitation of one’s own body. recounting his/her suicide attempt, a member writes: “i was so empty inside that it felt like an out-of-body experience, like something metaphysical was happening.” the person became a disembodied spectator of his/her own imminent demise, which was fortunately aborted. in this example, failure in dwelling expressed itself as disembodiment, as displacement from the corporeal body and evacuation of self. the retreat to symbolic space to escape the “cruel world” that they inhabit, a number of sf users create symbolic spaces where they can seek refuge, however fleetingly. in the words of one member, “making up my reality eases the emotional pain. i can be anything and do anything i want.” such a space grants one freedom that by implication is lacking in the material world – in this case, the freedom to act and the freedom to be. in sf users’ discourse, the symbolic space has at least two variants. the first variant is the temporal space of an idealized past. in a thread where members discuss their reasons for choosing their avatar, idyllic images of the natural environment are a recurrent motif and are discursively linked to memories of a bygone past. discussing their avatars, two users write: “nature is all love in the world, manifesting as a perfect playground for us humans…a happy content place,” and “i like to think i can get back to that feeling of pure happiness.” positive qualities associated with the natural world (e.g. unadulterated happiness, contentment, and resplendent love) are imputed to the temporal space of the past, before it was contaminated by time’s march forward. the past is ideal compared to an imperfect present marked by suicidality. the second variant is the imagined space of the afterlife. in this afterlife, there is no more suffering, and one may be reunited with a departed loved one. one member uses cloud pictures as their avatar to represent heaven which s/he uses as windows “to catch a glimpse of someone…just to know they are there and i will one day join them.” the possibility of a reunion in the afterlife brings this member much needed solace in the present. of course, not all sf users believe in an afterlife. some are neither spiritual nor religious, espousing the belief that consciousness ends with termination of the body’s cellular activities. others believe that neither heaven nor hell is a place, but in the words of one user, “a state of mind we inflict upon others and ourselves.” nevertheless, the lack or absence of spirituality or religiosity does not preclude non-believers from crafting their own secular versions of the afterlife. from the examples above, one could say that the creation of symbolic space is symptomatic of a problematic relation to the external world. but the imagined act goes beyond mere escapism; it also grants temporary reprieve and offers windows into more hopeful ways of dwelling, as the following post eloquently captures: my avatar is a balloon flying over a cloudy sky. it represents the goal where i want to find myself in the end. i think when you stand below the clouds – on earth – the clouds can darken your view by getting in the way of the sun. but on the other side of the clouds you are always near the sun. in this example, despair and hope are spatially differentiated. despair – suicidal despair – is earthbound (“below the clouds – on earth”), and hope, which may at times seem unreachable, lies “just on the other side of the clouds.” thus, the creation of symbolic space may also be an act of future-forming,37 on which notions of a safe space and place may be erected. part ii: on safe dwelling spaces sf as lifeline and respite as i have shown in the previous section, a problematic relation to place, characterized by entrapment on one hand and placelessness on the other, can contribute to thoughts and feelings of suicide. in both scenarios, one is not where one should be. it follows that finding a good place can greatly alleviate suicidality; in the words of one sf user, “life is about trying to find a better place to live.” for many users, sf serves as a waystation to that destination, a safe space that can mean the difference between life and death. interestingly, many sf users stumble upon the forums when they are searching the web for the means to their demise. one does not seek out sf, but instead, “find one’s way here.” although these users are fortunate that they stumbled upon sf rather than a pro-suicide venue like sanctioned suicide, their good fortune is not solely due to blind luck. for the site’s english-speaking users, at least, search engines like google yield prevention-oriented results first, even when users type in search phrases like “suicide methods” or “how to commit suicide.”38 [page 6] [qualitative research in medicine & healthcare 2022; 6:10437] article no nco mm er cia l u se on ly (this benefit is not evenly distributed across the globe, however.) users describe their serendipitous discovery of sf as a “lifeline,” with one member writing: “finding this…helped me keep it together.” tracking members’ usage of “sf” and deictic words or phrases like “here,” “this site,” or “this forum,” not only reveals concrete messages about the virtual terrain of sf; it also reveals participant meanings (i.e. metacultural commentaries) about what constitutes a “safe” place to be. from sf members’ discursive point of view, a safe space is a place for the management of acute crises and provides momentary respite from the stresses of life. comparing sf to a hospital’s er, one user writes, “i will always come here first, on this forum, my local emerg.” before resorting to self-injurious or life-threatening behavior, and before life’s hardships become overwhelming, they seek out sf first: “if things become over bearing and too much to handle i know where to come to before i break down from it again.” unlike real-life emergency rooms, however, a safe space imposes no temporal limits on the frequency and duration of one’s stay, with one member attesting that sf “has helped keep me alive for about 3 years now.” it is a place where one can go however many times necessary. members suggest that had it not been for the forums, they would be in an even more perilous situation, if not already dead: “without this site, i don’t know what i’d do,” and “i have had a stroke of luck today…if it wasn’t for everyone here i don’t know what would have happened.” empathy, reciprocity, and belonging as the last extract indicates, a safe space is filled with empathetic others who provide much needed support. one user writes, “i am so glad i found this place when i did. i never realized others felt exactly like i did and i never dreamed of the support and care i’d find right here on this website.” to this post, another responds, “that’s part of what this forum is all about j giving us all perspective on our issues…and showing us that other people are hurting too and know how we feel j.” having gone through similar crises (“are hurting too”), these empathetic others mirror one’s life experiences (“felt exactly like i did,” “know how we feel”), thereby communicating that one is not alone in the world. the realization that one’s burdens are shared by others can be life-affirming, shifting one’s perception of singularity to that of shared humanity. moreover, as the above posts illustrate, the users who provide support are themselves recipients of other users’ support. this suggests that safe spaces like sf are governed by the norm of reciprocity, with participants taking on the dual role of giver and receiver. this is consistent with previous studies of online mental health communities,39 where giving and seeking support (emotional, informational, network, or tangible aid) is a joint responsibility assumed by users, so that over time, everyone is expected to provide. in statements of affirmation and support – by members who had been in crisis, to members currently in crisis – the first-person, plural pronoun “we” surfaces frequently, as in these two examples: we want you here. all of us on this site. please don’t do it. we are genuinely here to help you through this difficult period of your life, it does get better. feelings change. life changes. circumstances change…. these messages communicate to acutely suicidal users that a safe space like sf is a shared space where every life counts. participation in the site makes one a valued member (“we want you here”), and one’s words of pain and anguish are heard not by an individual, but by an entire community (“all of us”). the community will endeavor to alleviate one’s suffering (“help you through this difficult period”), and in this context, the alleviation of suffering (“it does get better”) is a genuine possibility, rather than wishful fantasy. after all, statements like, “feelings change. life changes. circumstances change,” carry discursive weight when they are drawn from first-hand experience rather than contrived, meeting the criteria for authentic talk. freedom of emotional expression and mobility the discursive space of sf affords members freedom of emotional expression, provided that it does not harm others. in a safe space like sf, one can freely ventilate one’s feelings, without fear of judgment and reprisal. cathartic ventilation is seen in positive terms: “keep letting it out here, it is good for you.” it is facilitated in part by the physical and psychological safety afforded by anonymity: “no one here can hurt me cause we’re anonymous,” and in part by other users’ suspension of judgment: “this place is here to ask questions, i’ve never seen anyone judged for anything they’ve said here so happy to answer anything i can.” although catharsis is encouraged, members are under no time pressure to ventilate their feelings. “when you do want to talk,” one member writes reassuringly, “there will always be someone here to listen.” in other words, within the safe space of sf, choosing if and when to speak is at the discretion of the individual; members can speak their hearts and minds when they feel the time is right. such respect for other members’ agency has also been observed by sharkey et al. in an online community for young people who self-harm (ypsh).41 in this community, members refrain from giving direct advice and coming off as imposing via the use of mitigating devices, such as hedge phrases and tag questions (i.e. advice presented as questions). the conditional “when” in the above example is another such device, relieving the addressee of imposition. given suicidal individuals’ preoccupation with threats [qualitative research in medicine & healthcare 2022; 6:10437] [page 7] article no nco mm er cia l u se on ly to the maintenance of agency,34 the respect for sf members’ agency in the realm of emotional self-disclosure is unsurprising. this respect for agency surfaces again in members’ view that “staying” in sf is also a choice. as one veteran user writes to a new member, “if you decide sf is not for you then i hope you find something better with a therapist, friend, or other site.” in other words, everyone is welcome to “stay” in sf, but no one is forced to stay against their will. those who decide not to stay are wished “good luck” in their path to recovery. since entrapment is a major precursor to suicide among sf members, as i illustrated in the previous section, their respect for one another’s choice to stay or to leave is also unsurprising. thus, a safe space neither traps people in nor keeps people out. testing new ways of being and relating as a place, cyberspace provides many uses for many users. marciano’s typology conceives of three such uses:42 as a complementary sphere, cyberspace acts as a supplement to the offline world, such as teenagers’ use of social media to maintain relationships with peers after school hours. as an alternative sphere, cyberspace becomes a parallel world of sorts, with users living out virtual identities separate from that of their offline selves. an example would be a transgender user with a biologically male body presenting as a cisgender female online. in the third and final model, cyberspace acts as a preliminary sphere, a place where one can safely test the waters (so to speak); for instance, learning and adopting new coping mechanisms online, with the hope of applying them successfully to offline encounters. for members of the sf community, the use of cyberspace as a preliminary sphere – a place for testing out new ways of being – is especially pertinent. members recognize that sf is not the solution to all of life’s problems, but it is an important waystation in their path to recovery. for one user, it is the place where the process of opening up about suicidal thoughts and feelings began to unfold. in his/her message to a new member, s/he writes: “keep reaching out. that’s the best before-first-step i did. and this is where it happened.” for this user, emotional selfdisclosure in the presence of similar others online was an important “before-first-step” to seeking formal treatment and support offline. several users enlist the forums as a preliminary sphere in yet another way: as a place for testing new modes of relating, for starting relationships online with the hope of continuing them offline. while this is not the avowed goal of most users, or their primary motivation for participating in the site, this premise is supported by threads in which users arrange to meet in person. in one such thread, the topic creator (tc), who lives in london, gauges the interest of other london-based users in meeting face-toface. wary of “predators” who stalk vulnerable people online and might “go looking for targets,” participants suggested a variety of protective measures. these include meeting in a public place, sending via private message the meeting time and location, and creating a password-protected space within sf for those who agree to meet. discussion summary of findings the cultural discourse analysis of suicideforum users’ online communication reveals a range of discursive meanings about place. these meanings (presented throughout as cultural premises) are captured by two overarching themes. one pertains to problematic discourses about dwelling, the other to emancipatory discourses. from sf users’ discursive point of view, a problematic relationship to place can provoke suicidality. the nature of this relationship is two-fold. on one hand is a sense of entrapment, which can be exacerbated by relations of dependence within an abusive social milieu. on the other is a sense of placelessness, which may be symptomatic of a directionless life or felt incompatibility between self and world. whichever the case, there is a disjuncture between the place where one is (or is not), and the place one ought to be. while the relationship to place certainly influences affect, the converse also holds true: affect colors perception of place. the negative feeling states of suicidality can envelop the person and extend outward, causing the world to shrink for the suicidal person. the consequence is a sense of inescapability from a world that is asphyxiating or terrifyingly lonesome. at its most extreme, acute suicidality can disrupt indwelling, or the sense of emplacement in one’s body. to seek refuge from problematic places, the suicidal person might create symbolic spaces, such as the temporal space of an idealized past, or the imagined space of the afterlife. these spaces are symptomatic of an inhospitable external world, but they may also offer glimpses into more hopeful ways of dwelling. thus, to create symbolic spaces in which to dwell is to engage in future-forming.36 in sf users’ online communication, a folk model of what constitutes a safe space also emerges. according to this model, a safe space serves as a haven from life’s myriad crises, without imposing temporal limits on the frequency and duration of one’s stay. in this safe space, every life matters. ideally, it is filled with empathetic others who have firsthand experience with suicidality. these others take on the dual role of giver and receiver, earnestly paying forward the support they have received. one can safely ventilate one’s feelings in a safe space, without shame, fear of judgment, or reprisal. however, one’s timetable for personal self-disclosure is respected in a safe space; there is no pressure to disclose. the boundaries of safe spaces are also permeable, respecting people’s freedom of mobility so they do not feel trapped. lastly, one can try out new modes of being and relating in a safe space in order to better cope with the external world. [page 8] [qualitative research in medicine & healthcare 2022; 6:10437] article no nco mm er cia l u se on ly research contributions in the two decades since the advent of web 2.0, mainstream suicidology has advanced our knowledge of the relationship between internet and suicide. it has identified beneficial as well as harmful content, contexts, and uses, and the factors that predispose individuals toward such uses. however, the “psy” disciplines’ monopoly on the subject and the general lack of involvement or exclusion of other fields have caused the study of cybersuicide to retread the same steps. the “internet” (with capital ‘i’) is conceptualized as monolithic, its effects rigidly deterministic of human behavior, with internet users as mere conduits of these effects. because mainstream suicidology operates from a deficits (rather than strengths) model,18 suicidal users are seen primarily through the lens of psychopathology, which brackets from consideration their agency, their embodied perspectives, and the cultural construction of suicidal subjectivity. without discrediting the contributions of routinized ways of seeing, the present study adds to the literature by linking the study of cybersuicide to the cultural construction of meaning. using the communication theory and method of cuda, i approached the users of a pro-recovery suicide forum as a discursive community, with shared values, beliefs, and strategies for meaning-making. i also conceived of the internet as a space rather than a mere tool, in which suicidal users jointly create meanings about their communicative worlds. because of its strict adherence to an evidence-based paradigm, mainstream suicidology has limited the discursive resources we have for addressing multifaceted social issues like suicide.43 it has also focused on static factors that are directly observable and measurable at the expense of those transient, changeable, and highly contingent factors that give suicidal people hope. this study sought to expand our discursive resources by incorporating suicidal people’s grounded perspectives – in particular, folk understandings of the role of place in the exacerbation and amelioration of suicidality. when listened to, participants’ own terms and meanings have much to offer existing paradigms of care, to which i now turn. therapeutic implications cuda has five investigative modes which follow a weak linear design.30 in the first three modes – theoretical, descriptive, and interpretive – communicative practices are theorized and described and their meanings to participants interpreted. these three modes are essential to any culturally-based analysis. the present study engages in the theoretical mode by applying a communication definition of culture29 to a pro-recovery suicide forum, whereas the descriptive and interpretive modes are on display in my presentation of research findings and cultural premises. the fourth mode, the comparative mode, compares two or more situated instances of an expressive activity. in the fifth and final mode, the critical mode, dominant discourses and practices are evaluated from the standpoint of local theory. a study employing cuda can proceed without the fourth or fifth modes, though much can be gained from engaging in one or both. in this section, i engage in the critical mode of cuda by making modest suggestions for remediating, and augmenting, dominant treatment models using sf users’ grounded perspectives. based on the present endeavor’s findings, at least five recommendations emerge. first, treatment providers must resist the tendency to succumb to panic with regards to the online activities of their suicidal patients. in light of spaces like sanctioned suicide that foster extreme views and defer the possibility of help-seeking, it is important for clinicians to warn patients of the dangers posed by websites with triggering content. having said that, the internet is not a uniformly dangerous place, and clinicians can endeavor to recreate, in the therapeutic encounter, some of the qualities that make pro-recovery forums safe spaces. second, clinicians who adhere dogmatically to the principles of reality-testing will miss the recuperative potential of imagined spaces. imagination is a powerful window to distant others and places – and to possible futures and lives.44 for suicidal persons, that could mean imagining a better world where one could continue living. rather than dismiss the retreat to imagined space as mere escapism or failure in reality-testing, clinicians ought to mine these retreats for the concrete solutions they may offer. third, suicidal people’s negative face needs, or desire to be free from imposition,45 need to be respected. at the practical level, this could entail creating a space in which the patient’s (rather than clinician’s) timetable for fraught emotional disclosures is honored. on that note, one of the biggest impediments to help-seeking among suicidal people is the threat of involuntary admission and psychiatric coercion.46 in light of sf users’ preoccupation with entrapment, inpatient hospitalization needs to be reconsidered. a discursive space in which this threat is attenuated can facilitate self-disclosure. fourth, clinicians need to perfect the art of double listening so that they can attend to the absent but implicit dimensions of patients’ utterances.47 when people speak of pain, they are also referring (implicitly) to the salve that can alleviate that pain. when people speak of despair, they are also invoking the hope that had been crushed – and the possibility of its restoration. thus, when a suicidal person speaks of being unable to function in the real world, the clinician can respond by bolstering the person’s sense of efficacy until s/he feels empowered to meet the demands of the external world. and lastly, the individualist – and decontextualized – perspective championed by mainstream suicidology needs to be tempered by consideration of the role of place. se [qualitative research in medicine & healthcare 2022; 6:10437] [page 9] article no nco mm er cia l u se on ly vere psychological disturbances that appear to arise from within, such as the disembodiment produced by acute suicidality, become more comprehensible when considered in terms of self-world relations. after all, self loss is world loss, and vice versa.48 directions for future study the present study uncovered a range of discursive meanings about place that radiate from suicideforum users’ online communication. although cuda’s five radiants of meaning are analytically separable, in actuality, radiants criss-cross in myriad unexpected ways.30 we see this, for example, in participants’ notions of a safe space, which are inextricably bound to meanings about self, recuperative action, reciprocal relations, and emotion expression. in this study, i have centered the radiant of dwelling, and a previous study has attended specifically to messages about personhood (being) among suicidal internet users.9 subsequent research can foreground meanings about sociality (relating), emotion (feeling), and conduct (acting). another extension of this study can enlist cuda’s comparative mode to bring into sharp focus general and particular features of online suicide forums. one could compare and contrast sf users’ meanings about place with those radiating from other pro-recovery forums, as well as pro-suicide venues like sanctioned suicide mentioned in this article’s introduction. lastly, future extensions of this study can contribute to theorizations on liminality – by expanding our understanding of the interstitial space between place and placelessness, life and death, suicide and renewal. references 1. twohey m, dance gjx. where the despairing log on, and learn ways to die. the new york times [internet]. 2021 dec 9 [cited 2022 feb 28]: a3. available from: https://www.nytimes.com/interactive/2021/12/09/us/where-the-despairinglog-on.html 2. seko y. “suicide machine” seekers: transgressing suicidal taboos online. learn inq 2008;2:181-99. 3. baym n, markham a. introduction: making smart choices on shifting ground. in: markham a, baym n, eds. internet inquiry: conversations about method. thousand oaks: sage; 2009. pp. vii-xix. 4. ahmad fb, anderson rn. the leading causes of death in the u.s. for 2020. jama 2021;325:1829-30. 5. westerlund m. the production of pro-suicide content on the internet: a counter-discourse activity. new media soc 2011;14:764-80. 6. ozawa-de silva c. too lonely to die alone: internet suicide pacts and existential suffering in japan. cult med psychiatry 2008;32:516-51. 7. ozawa-de silva c. shared death: sociality and internet group suicide in japan. transcult psychiatry 2010;47:392-418. 8. recupero p. suicide and the internet. in: simon ri, hales re, eds. textbook of suicide assessment and management. 2nd ed. arlington: american psychiatric publishing; 2012. pp 515-38. 9. stamenkovic m. in full view: cybersuicide, hypervisual self and public showcase of death (for real). medijski dijalozi 2011;5:73-101. 10. alvarez m. the suicidal self in cyberspace: discursive constructions of identity in a pro-recovery suicide forum. front commun 2021;6. available from: https://www.frontiersin.org/ articles/10.3389/fcomm.2021.674893/full#b45 11. ekman i, söderberg s. “across the street – not down the road”: staying alive through deliberate self-harm. in: sher l, vilens a, eds. internet and suicide. hauppauge: nova science publishers; 2009. pp 221-32. 12. murphy g. the national suicide prevention lifeline and new technologies in suicide prevention: crisis chat and social media initiatives. in mishara bl, kerkhof jfm, eds. suicide prevention and new technologies: evidence based practice. london: palgrave macmillan; 2013. pp 111-22. 13. mewton l, andrews g. cognitive behaviour therapy via the internet for depression: a useful strategy to reduce suicidal ideation. j affec disord 2015;170:78-84. 14. mishara bl, côté lp. suicide prevention and new technologies: towards evidence based practice. in: mishara bl, kerkhof jfm, eds. suicide prevention and new technologies: evidence based practice. london: palgrave macmillan; 2013. pp 1-23. 15. quinnett p, baker a. web-based suicide prevention education: innovations in research, training, and practice. in: sher l, vilens a, eds. internet and suicide. hauppauge: nova science publishers; 2009. pp 41-61. 16. alvarez m. discursive tensions and contradictions: a cultural analysis of an online self-harm forum. in: bareiss m, ed. communicating with, about, and through self-harm: scarred discourse. lanham: lexington books; 2020. pp 113-133. 17. mishara bl, kerkhof jfm, eds. suicide prevention and new technologies: evidence based practice. london: palgrave macmillan; 2013. 18. sher l, vilens a, eds. internet and suicide. hauppauge: nova science publishers; 2009. 19. white j, marsh i, kral mj, morris j, eds. critical suicidology: transforming suicide research and prevention for the 21st century. vancouver: ubc press; 2016. 20. katz je, rice, re. social consequences of internet use: access, involvement, and interaction. cambridge: mit press; 2002. 21. giles dc, newbold j. ‘is this normal?’: the role of category predicates in constructing mental illness online. jcmc 2013;18:476-90. 22. markham a. life online: researching real experience in virtual space. walnut creek: altamira press; 1998. 23. moores s. media/theory: thinking about media and communications. new york: routledge; 2005. p 169. 24. willson m. technically together: rethinking community within techno-society. new york: peter lang; 2006. 25. baym n. personal connections in the digital age. malden: polity; 2010. 26. meyers e. dishing dirt in the digital age: celebrity gossip blogs and participatory media culture. new york: peter lang; 2013. 27. hecht m. the promise of communication in large-scale, community-based research. in: carbaugh d, buzzanell pm, eds. distinctive qualities in communication research. new york: routledge; 2010. pp 53-72. [page 10] [qualitative research in medicine & healthcare 2022; 6:10437] article no nco mm er cia l u se on ly 28. hymes d. models of interaction of language and social life. in: gumperz j, hymes d, eds. directions in sociolinguistics: the ethnography of communication. new york: holt, rinehart & winston; 1972. pp 35-71. 29. tracy k, robles js. everyday talk: building and reflecting identities. 2nd ed. new york: guilford press; 2013. p 25. 30. carbaugh d. a communication theory of culture. in: kurylo a, ed. inter/cultural communication: representation and construction of culture. thousand oaks: sage; 2012. pp 69-87. 31. carbaugh d. cultural discourse analysis: communication practices and intercultural encounters. j intercult commun res 2007;36:167-82. 32. philipsen g. the prospect for cultural communication. in: kincaid dl, ed. communication theory: eastern and western perspectives. thousand oaks: sage; 1987. pp 245-54. 33. carbaugh d, gibson t, milburn t. a view of communication and culture: scenes in an ethnic cultural center and a private college. in: kovacic b, ed. emerging theories of human communication. albany: suny press; 1997. pp 1-24. 34. scollo m, milburn t, eds. engaging and transforming global communication through cultural discourse analysis: a tribute to donal carbaugh. lanham: fairleigh dickinson university press; 2019. 35. flanigan j, alvarez m. cultural discourse analysis as critical analysis: a view from twin oaks and suicideforum.com. in: scollo m, milburn t, eds. engaging and transforming global communication through cultural discourse analysis: a tribute to donal carbaugh. lanham: fairleigh dickinson university press; 2019. pp 73-90. 36. stern sr. encountering distressing information in online research: a consideration of legal and ethical responsibilities. new media soc 2003;5:249-66. 37. gergen, k. from mirroring to world-making: research as future forming. j theory soc behav 2014;45:287-310. 38. scherr s, haim m, arendt f. equal access to online information? google’s suicide-prevention disparities may amplify a global digital divide. new media soc 2019;21: 562-82. 39. smithson j, sharkey s, hewis e, et al. problem presentation and responses on an online forum for young people who self-harm. discourse stud 2011;13:487-501. 40. sender k. the makeover: reality television and reflexive audiences. new york: nyu press; 2012. p 115. 41. sharkey s, smithson j, hewis e, et al. supportive interchanges and face-work as ‘protective talk’ in an online selfharm support forum. commun med 2012;9:71-82. 42. marciano a. living the virtureal: negotiating transgender identity in cyberspace. jcmc 2014;19:824-38. 43. marsh i. critiquing contemporary suicidology. in: white j, marsh i, kral mj, morris j, eds. critical suicidology: transforming suicide research and prevention for the 21st century. vancouver: ubc press; 2016. pp 15-30. 44. orgad s. media representation and the global imagination. malden: polity; 2012. 45. goffman e. on face-work. in: interaction ritual: an analysis of ritual elements in social interaction. garden city: doubleday; 1967. pp 5-45. 46. whitaker r. mad in america: bad science, bad medicine, and the enduring mistreatment of the mentally ill. 2nd ed. new york: basic; 2010. 47. hedtke l, winslade j. the crafting of grief: constructing aesthetic responses to loss. new york: routledge; 2017. 48. atwood ge. the abyss of madness. new york: routledge; 2012. [qualitative research in medicine & healthcare 2022; 6:10437] [page 11] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2017; 1:6944] [page 109] introduction in the current era of rapidly advancing medical knowledge and changing clinical and administrative processes, physicians’ formal education becomes obsolete in a matter of years; thus, it is important to educate physicians to develop learning practices that will sustain them throughout their professional lives. the adult learning paradigm as first articulated by malcolm knowles1,2 posits that adults approach their education with aptitudes and goals that differ from those of children, thus, the design of the educational experiences of adults should reflect those different needs. ideally, adult learning environments should encourage learners’ autonomy and engagement – orientations to learning that will also sustain ongoing, independent, professional practice. the paradigm of adult learning as adopted within the context of medical education empharesident assessment facilitation team: collaborative support for activated learning elissa foster,1 nicole defenbaugh,2 susan e. hansen,3 nyann biery,3 julie dostal3,4 1depaul university college of communication, chicago, il; 2clinical communication educator, allentown, pa; 3lehigh valley health network department of family medicine, allentown, pa; 4morsani college of medicine, university of south florida, allentown, pa, usa abstract because healthcare knowledge, practices and systems change so rapidly, physicians-in-training need to develop skills related to lifelong learning. the adult learning paradigm defines the effective professional learner as autonomous and activated. a part of the residency’s p4 (preparing the personal physician for practice) redesign, the raft (resident assessment facilitation team) process was designed to encourage residents’ adoption of activated learning behaviors by incorporating their participation in team-based educational planning and assessment of competence. this study examined interaction within the raft meetings to guage residents’ adoption of activated learning behaviors over time. in this study, transcripts of raft meetings from a single cohort of residents during the first and third years of training were analyzed using a grounded theory approach. teams of at least two analysts per transcript engaged in two rounds of descriptive coding and three levels of axial coding to examine interaction during the raft meetings and identify how that interaction was related to residents’ activated learning. four categories of interaction were identified: advising, managing the process of the meeting, expressing and managing emotion, and demonstrating reflective practice and mindfulness. across those categories, 36 sub-types of messages indicated both similarities and differences between firstand third-year residents. specifically, third-year residents took a more active leadership role in meetings; faculty team members were more likely to hand over responsibility for problem solving to thirdyear residents. integrating residents into the raft advising and assessment process provides a context for residents to practice and exhibit activated learning behaviors. correspondence: elissa foster, depaul university college of communication,14 e. jackson blvd, chicago, il 60604, usa. tel.: +1.312.362-8954. e-mail: commscholar@hotmail.com key words: advising, clinical competency committee, self-assessment, adult learning. contributions: ef was the primary author for the article. she was involved in all aspects of the article: concept, design, analysis, interpretation, writing and editing. ef drafted the first draft of the document with input from the other authors. she edited the manuscript and approves of the final version to be published. ef agrees to be accountable for all aspects of the work. nd was also involved in every aspect of the manuscript including its concept, design, analysis, interpretation, writing, and editing. nd approved of the final version to be published and agrees to be accountable for all aspects of the work. sh was involved in the concept and design of the paper and participated in the analysis and editing of the manuscript. sh approved of the final version to be published and agrees to be accountable for all aspects of the work. nb assisted with the concept and design of the paper and participated in the analysis. she approved of the final version to be published and agrees to be accountable for all aspects of the work. jd was involved in the concept and design of the article. she also participated in the analysis of the data and writing portions of the manuscript. she edited the manuscript and approved the final version to be published. jd agreed to be accountable for all aspects of the work. conflict of interest: the authors declare no potential conflict of interest. funding: this research was supported by funding from the dorothy rider pool health care trust and the faculty research and development program, college of communication, depaul university. acknowledgements: the authors wish to acknowledge drew keister, md and jacqueline grove at lehigh valley health network for their assistance in the preparation of this article, and the residents and faculty of the family medicine residency at lehigh valley health network who participated in raft meetings and gave their permission to record and analyze their interaction. the research conducted in this manuscript was approved by the lehigh valley health network (lvhn) institutional review board and complies with the wma declaration of helsinki. informed consent to participate in the research was obtained by all participants and their anonymity was ensured throughout the research process. the lvhn irb approved the human subjects determination and our compliance with ethical standards of research. there was no conflict of interest for the authors. received for publication: 21 july 2017. revision received: 5 january 2018. accepted for publication: 5 january 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright e. foster et al., 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:109-120 doi:10.4081/qrmh.2017.6944 qualitative research in medicine & healthcare 2017; volume 1:109-120 no n c om me rci al us e o nly sizes that physicians learn best through problem-focused, immediately applicable, self-directed experiences.3-7 the activated (or self-activated, self-motivated, or autonomous) learner is a component of the adult learning paradigm, and has been discussed in the education field since the 1970s.8,9 similar to autonomous learner, a term that emphasizes a (pro-)active role in the learning process,10 the term activated implies that the learner is engaged in the processes and assessment of her or his education, with less emphasis on the idea of independent learning. if residency programs hope to graduate physicians who can continually learn and adapt their practices throughout their careers, supporting them to become activated learners is a significant goal for medical educators. background: graduate medical education as a learning environment, medical residency uses an apprenticeship model in which physicians learn though supervised practice with relatively little time devoted to didactic teaching. when residents transition from contentoriented learning environments such as pre-medicine degrees in universities and medical schools, which traditionally involve more didactic education, they may be less prepared for the autonomous, practice-based learning environment of residency. in residency, much of the teaching and learning of medicine occurs implicitly as residents and attending physicians deliver medical care to patients. research has described how the clinical context also includes implicit learning that is not part of the formal training but rather serves as a hidden curriculum.11-13 particularly referring to non-scientific areas of practice such as medical ethics, the power of the hidden curriculum metaphor is that it describes how explicitly taught principles of ethics that are not reflected in actual behaviors of physicians may be soon abandoned in favor of what trainees have absorbed and internalized as a consequence of observing other physicians. a related discussion in the medical education literature pertains to physician socialization – an extensive process that underpins the development of professionalism14-16 and physician identity17-19 over time, by framing physicians’ development of ethics, professionalism, and physician identity as occurring through implicit rather than explicit learning, this body of research justifies viewing the development of lifelong learning practices in a similar light. specifically, all four constructs refer to the physician’s orientation towards practice rather than knowledge of specific content, and all develop through exposure to implicit messages and activity more than delivery of didactic content. the argument of this article is that although physicians will acquire skills and strategies to support their learning over time just as they develop a sense of ethics and professionalism, their development as learners need not be left to chance. medical educators can and should be mindful of how residents are learning to learn, and integrate experiences and practices into residency that will support activated learning. in 2007, recognizing that residency education in family medicine was limited in terms of training physicians to meet the growing health care needs of the us population, the american board of family medicine, association of family medicine residency directors, and the american academy of family practice launched a demonstration project across 14 family medicine residency programs.20 during the 5-year, active phase of the project (known as p4 or preparing the personal physician for practice), the selected programs were challenged to implement innovative curricular changes to improve physicians' future practice. among a constellation of other changes, the residency program that was the site of this study made adult learning principles a foundation of the redesign in order to encourage and support activated learning among the residents. prior to the redesign, as with all other programs across the country, the family medicine curriculum was principally determined by a list of required rotations through various specialties, and a list of required hours of service or numbers of procedures performed or types of cases managed. after the redesign, the residency curriculum was supported by a set of portfolios (fields of practice with associated learning goals, objectives, and activities) and a set of family medicine competencies with articulations of standards to be met for graduation. rather than working through checklists, residents were required to identify their personal learning needs, select or create learning activities that would help them to meet those needs, and conduct regular written assessments (both written and oral) of their progress in the family medicine competencies. in terms of learner activation, the residency redesign represented a reversal of the customary, top-down system of education where learning activities and progress were determined by national regulations, the particular emphasis of the residency program, and faculty members’ evaluations. instead, the redesigned residency offered an environment in which residents were expected to participate in all aspects of their learning as peers and, in some ways, curators of their education. rather than focusing on teaching residents the principles of adult learning didactically, the educational structure of the program itself was changed so as to embed expectations for residents’ active learning into the activities and educational experiences of residency. theoretical foundations in addition to acknowledging the relevance of the adult learning paradigm in redesigning the residency, two other constructs supported an implicit approach to encouraging learner activation-parallel process and social construction. an influential construct known in the behavioral sciences as parallel process,21 and in education as implicit or mindful teaching,22,23 posits that a similar dynamic exists between clinician-patient communication and [page 110] [qualitative research in medicine & healthcare 2017; 1:6944] article no n c om me rci al us e o nly teacher-learner communication.24 research indicates that teaching practices modeled during a resident’s formal education can have lasting effects on future patient care encounters.25,26 learners’ socialization into the culture of medicine inherently shapes basic assumptions about what are acceptable and unacceptable medical practices,15 and, as already described, a growing body of literature identifies the impact of the hidden or informal curriculum in medical education.25-29 thus, the residency redesign assumed that if residents experience supportive – activating – communication, they will replicate that communication in their care of patients. in turn, by incorporating residents’ voices into educational planning, and including them as peers in that conversation, they experience participation as equal members of an interdisciplinary team,30 and are encouraged to practice ongoing self-reflection and self-assessment of their learning as graduate physicians. with origins in sociology, the social construction paradigm focuses on language and social interaction as the principal means through which social realities (such as educational practices, institutions, organizational cultures, and belief systems) emerge and humans learn how to relate to one another.31-34 social constructionist approaches have been adopted in a wide range of medically-related studies, including medical perception,35 emotions,36-37 disability,38 gender and illness,39 and death.40 according to the social construction paradigm, language does not merely convey neutral information, but conveys the shared assumptions of a given group. for example, medical education now uses the phrase professionalism instead of bedside manner to invoke both the breadth of impact that physicians’ communication plays in clinical care, and also the centrality of competent communication to the work of being a doctor. in addition, social construction emphasizes that language exists within specific social contexts, and that social interaction within those contexts is necessary to establish meaning as individuals are habitualized in language and then internalize its implications. in this case, the family medicine residency program adopted a special language and rules of engagement related to education (such as raft, educational soap note, learning contracts, selectives, and so on), which constructed the residency as a collaborative and egalitarian community, and constructed the residents as activated learners. the raft (resident assessment facilitation team)41 represented both a structured interaction where activated learning could be encouraged, and a site where residents’ activated learning might be observed. description of the resident assessment facilitation team one feature of the redesign that was intended to guide and support residents as they adopted a more central role in their education was called the raft – a collaborative advising and assessment process that brought faculty advisors and residents together. medical education historically has excluded residents from participating in their own assessment, relying solely on faculty feedback to evaluate residents’ educational progress. however, selfassessment is currently recognized as an important and integral part of residency education.42-45 self-assessment processes often incorporate feedback from peers and faculty46 and, when effectively communicated, can teach residents how to view feedback as a necessary part of ongoing improvement. the resident-centered raft process brought together the recognized benefits of resident self-assessment with collaborative dialogue, and was designed with the following goals: i) resist traditional hierarchical relationships among learners and faculty by enacting collaborative processes of educational planning and assessment.47 ii) encourage resident activation and empowerment.20,42 iii) preserve residents’ sense of well-being throughout the course of the residency.15,41 prior to the redesign, as observed by the first author and experienced by the fifth author over many years as a physician faculty member and residency director, resident assessment meetings were highly directive, critical and accomplished in the absence of the resident. advisors subsequently summarized for the residents the outcomes of their assessment and any education plans that the faculty members and residency director had determined were necessary. in contrast, the raft is an interdisciplinary group that includes the resident, program director, advisor, behavioral medicine faculty member, medical educator, and residency manager. the raft innovation anticipated by several years the accreditation council for graduate medical education (acgme) requirement that all residency programs implement a clinical competency committee (ccc)48 for the assessment of residents. although the raft addresses goals similar to the ccc by creating a team-based system for providing feedback to residents, it differs from it by deliberately including members with different disciplinary roles (rather than emphasizing physician faculty involvement) and also by including the resident as a central member of the team. the ccc is also different from raft because its primary responsibility is to assess resident performance. in contrast, the raft meeting is conducted as a group advising conversation and provides a structured review of the resident’s educational activities, progress toward learning objectives and competency milestones, and reflections on learning experiences. utilizing a set of communication principles intended to maintain safety and confidentiality, the team collaboratively addresses the resident’s educational and performance concerns. the raft convenes for approximately one hour per meeting: three times during internship, twice during second and third years, and with the option to call an interim raft if needed to adjust a resident’s educational plan between scheduled raft meetings. formal educational [qualitative research in medicine & healthcare 2017; 1:6944] [page 111] article no n c om me rci al us e o nly planning is supported with a form – an educational soap note – designed specifically for use during advising meetings between the resident and advisor, as well as for presentation during the raft. the form outlines individualized learning activities both completed and planned for the future, and describes progress toward competency milestones. the educational soap note provides a framework for discussion during the meeting, serving as an agenda of sorts, and, after any suggested changes have been adopted, is formally approved by everyone present as the meeting concludes. research questions preliminary investigation of the raft process21 indicated some success in addressing a prevailing problem of residents’ loss of well-being over the course of residency.49,50 the following questions remained regarding whether and how the meetings effected a change in residents’ capacities as activated learners. the theoretical assumptions of the residency redesign suggested that, by involving the residents in a dialogic process in which they played a key role in decision-making about their education, residents would both develop and demonstrate activated learning skills. just as the hidden curriculum teaches implicitly as residents and attending physicians manage the medical care of patients, learner activation is assumed to occur as residents and the other raft team members attend to the business of planning educational activities and monitoring resident progress. the tenets of social construction also indicate that language and interaction constitute social realities by conveying shared assumptions and practices such as the relative power and roles of the interactants – in this case, the shared power of the raft members, including the resident, and the expectation that the resident plays an active role. thus, the following questions guided the inquiry into the impact of the raft meeting on residents’ development as activated learners: rq1: what are the features/functions of social interaction among raft team members? rq2: what differences (if any) can be identified in language and social interaction between first-year raft meetings and those that occur late in the residents’ third year of training? rq3: what does the residents’ participation in raft meetings imply about activated learning, particularly regarding the residents’ role? materials and methods aligned with the theoretical frameworks of parallel process and social construction that informed the development of the raft and other features of the residency redesign, a discursive approach was employed to examine how interaction51,52 in this context influenced the residents’ development as activated learners. the term social linguistic analysis52 has been used to describe a focus on the discourse of a small group of people in a specific context. in this case, conversation among a group of individuals is recognized as a site of meaning and a channel through which social realities can emerge, such as the construction of the resident as an activated learner. because the emphasis of this inquiry is on the emergence of a set of practices related to residents’ behavior – activation – the social interaction of the group and what it conveys about roles and expectations for behavior is particularly salient. sample the texts that were analyzed are verbatim transcripts from raft meetings for a single cohort of six residents from within the irb-approved p4 study population (enrolled residents between july 2007 and june 2012) – the only cohort for which a complete set of recorded raft meetings was available. to identify changes that may have occurred in residents’ activation as learners through the course of the residency, two sets of meetings were selected for analysis: i) the residents’ first raft meetings (summer of their first year) and ii) the penultimate raft meeting (fall of their third year). after initial review of the transcripts, it was determined that the final raft meeting of the residency was substantially different from all the other meetings, making it unsuitable as a point of comparison. specifically, the final raft meeting typically served as an idiosyncratic conversation about each resident’s entire residency experience, rather than the typical educational planning and competency assessment. similarly, no interim raft sessions were included because their format varies from standard procedures related to the educational soap note. thus, the data consisted of 12 transcripts (total = 225 pages, mean = 18.75 pages) that were compared across the two time-points – pgy1 (post-graduate year one) and pgy3 (post-graduate year three). data analysis the analysis team included two medical educators (ef – who participated in all the raft meetings in the sample, and nd who participates in current raft meetings). because participation in the raft meetings might influence the analysis by imposing interpretations on the text that were not necessarily evident to others, both initial coding and member checking involved two faculty researchers (sh, nb) who do not participate in raft meetings. in some cases, participation of the raft member who was present at the discussion helped to clarify moments of the interaction that were not easy to interpret from the transcript and recording alone. discourse analysis is an interpretive process in which texts are examined for emergent patterns of meaning. the analysis of the raft transcripts followed principles of grounded theory,53 in which texts are approached inductively, and interpretations remain open until larger categories can be identified through iter[page 112] [qualitative research in medicine & healthcare 2017; 1:6944] article no n c om me rci al us e o nly ative rounds of comparison to one another and across cases. for this study, given that the topics of conversation were guided by the educational soap note (such as, updates of completed educational activities, review of competency self-assessment and discussion of formal written feedback, proposed learning activities, and so on), analysis focused not on the content or topics of conversation, but rather on what was being accomplished through the interaction among the raft members. in addition, the research questions centered on residents’ adoption of a specific role or orientation to learning, which would be evidenced as much by what was performed through discursive interaction as by the content of what was uttered. for example, the topic of the conversation might be which clinical rotations were being proposed, but multiple social and discursive activities could be accomplished through that conversation; including, offering advice, eliciting information, offering reassurance, reflecting on past performance, and so on. analysis occurred in five phases: i) independent open descriptive coding: all four members of the analysis team participated in the first round with two coders per transcript including one medical educator and one researcher; coders interpreted and described in their own words what was being accomplished during each moment of the meeting. ii) synthesis of the descriptive code sets by a third coder: each medical educator synthesized codes on the transcripts for which they did not do initial coding, by reconciling the descriptions offered by the independent coders, and either a) offered a single descriptive code that reflected two similar interpretations, or b) retained multiple codes that interpreted the moment differently in terms of what it accomplished, and/or c) added an interpretation with an additional code. iii) independent axial coding by both medical educators to identify common themes: coders read through all the transcripts and associated interpretations, established consistent language that reflected themes of discursive activity identified in the initial coding, and grouped themes into categories of interaction during raft meetings. iv) consensus axial coding into general categories and the development of operational definitions: the independent coders met to discuss the emergent themes and categories of interaction and to collaboratively develop the descriptive title and definition for each general category of the different activities of the raft meeting. every theme was assigned to one of the general categories. coding at this phase of the analysis was closed in that each theme was associated with only one category. v) comparison of themes and associated categories across both sets of raft meetings to compare firstand third-year results: coders compared results from each set of analyses side-by-side to identify similarities and differences of interaction between first-year raft meetings and third-year raft meetings. as a form of member-checking to assess the plausibility of the results, the general categories and their associated themes (table 1) were shared with the residency program director (jd, fifth author) and a faculty member who had participated in many of the raft meetings. the research team as a whole adjusted the wording of categories and their operational definitions until consensus was reached that the categories and themes accurately represented the transcript data. results rq1: what are the features of social interaction among raft team members? four general categories of interaction occurred during the raft meetings: advising, managing the process of the meeting, expressing and managing emotions, and demonstrating reflective practice and mindfulness. operational definitions are as follows: i) advising: interaction in which faculty members offered guidance to the resident in the form of suggestions, feedback, and information (e.g., about program procedures and regulations, options for electives, schedules, etc.). this category also included any instances in which the resident offered guidance or feedback to the residency program. ii) managing the process of the meeting: interaction that functioned to keep the meeting on task or move the agenda forward, including clarifications of the process and metacommunication54 that ensured shared understanding among participants. iii) expressing and managing emotions: interaction that was primarily emotional in content (expressions of feeling or eliciting conversation about emotion) or function (setting an emotional climate such as use of humor) whether expressed by faculty members or residents. iv) demonstrating reflective practice and mindfulness: interaction in which the resident considered past performance, identified learning needs, or offered evidence of having undertaken such reflection. this category included statements or questions from the faculty encouraging or demonstrating reflection. (table 1) rq2: what differences (if any) can be identified in language and social interaction between first-year raft meetings and those that occur late in the residents’ third year of training? advising. predictably, the majority of communication in this category for both firstand third-year meetings involved discussion of feedback on resident performance and faculty advice and suggestions related to the residents’ educational activities. the principal difference was that first-year meetings included more direct offers of assistance whereas in third year there were more explicit efforts by faculty to cede responsibility for educational planning to the resident. in the following pgy1 example, two faculty members offered specific advice to the resident about journaling as a self-reflective practice. both comments are made in the same raft session. [qualitative research in medicine & healthcare 2017; 1:6944] [page 113] article no n c om me rci al us e o nly faculty 1: there is a book that can sometimes help people get started…it’s called the cameron…the artist’s way…she actually takes you through doing daily pages and uh just writing and reflecting. i think i’ve got a copy in my office if you want to borrow it. faculty 2: when you do that, date all of your entries, including the year. you’ll be surprised…what happens is what you write leads to other things and so it’s kind of a way of unpacking stuff if you just learn to let it flow, and i think the idea about “what was my day like, what was this experience like, how i’ve been doing, thinking, feeling, reacting?” just with the idea of getting what’s inside out and making it concrete and sometimes re-reading it will be, you know, some awareness that you could’ve made, so your willingness…of trial and error is huge. in both comments, the faculty members are offering specific assistance to the resident who made a prior comment that s/he was thinking about journaling. the faculty members offer suggestions for locating books on journaling, tactics for how to journal, and provide suggestions based on their own experiences. the second faculty member is also providing a rationale for why journaling is a useful practice and how journaling can increase one’s awareness. in the following pgy3 example, the faculty member addresses the resident’s concern about her/his progress on a practice improvement project by prompting reflection rather than giving advice. faculty: so, i mean, what do you think that would look like? if you were to feel like this whole thing was successful as a practice improvement, what…what would happen? in this brief quotation, the faculty member poses questions directly to the resident to take ownership of her/his [page 114] [qualitative research in medicine & healthcare 2017; 1:6944] article table 1. general categories and themes describing interaction during raft meetings. category pgy 1 themes pgy 3 themes advising feedback from faculty and residents feedback from faculty and residents seeking and/or giving additional details by asking seeking and/or giving additional details by asking and responding to clarifying questions and responding to clarifying questions advice-giving by faculty* advice-giving integrated into dialogue* offers of help and guidance from faculty** expressing/ managing expressions of emotion/ use of feeling words, expression of emotion, use of feeling words, emotions emotional disclosure, vulnerability emotional disclosure, vulnerability supportive and affirming compliments supportive and affirming compliments and validation statements and validation statements statements of reassurance or encouragement statements of reassurance or encouragement statements of gratitude and appreciation statements of gratitude and appreciation use of humor (e.g. self-deprecation)* use of humor (including in-group jokes)* personal storytelling in response to prompts* storytelling integrated into conversation* discussions of self-care and wellbeing discussions of self-care and wellbeing integrated in response to prompts* into conversation* managing the meeting process managing the flow of the session (typically initiated managing the flow of the meeting (still initiated by the medical educator)* by the medical educator but also by the resident)* metacommunication metacommunication requests for clarification or information around educational process** comments on raft meeting environment as “safe”** group dynamic, convergence to shared process norms, collaboration or cohesion** relationship-building/side conversations** demonstrating reflective questions to resident encouraging self-reflection questions to resident encouraging self-reflection practice/ mindfulness self-assessment of performance* self-reflection integrated with self-assessment* self-reflection on education planning reflective questions and/or statements, implicit reflection and personal needs* on growth and development integrated into conversation* push-back moments where resident disagrees with others’ assessments** raft, resident assessment facilitation team*change occurring between pgy 1 and pgy 3, **type that appears in only one year. no n c om me rci al us e o nly practice improvement (pi) project and instill activated learning instead of offering explicit advice for what s/he can do to be successful. as this example demonstrates, the faculty member is encouraging the resident to figure out the necessary steps for completing the pi project. managing the process of the meeting in the first-year meetings, the majority of communication related to the meeting process involved the faculty – both the medical educator whose formal role was to facilitate the meeting and other faculty members – who initiated topic changes and ensured that various raft functions were fulfilled. in these first-year meetings, process-related communication initiated by residents was limited to questions of clarification regarding the flow of the meeting or educational planning procedures. in the third-year meetings, residents shared responsibility for the process of the meeting and played an active role as activated learners; particularly, residents initiated topic-shifts and sometimes even the order in which parts of the raft conversation occurred. as part of the pgy1 raft meeting, the medical educator established an opening routine by welcoming the team and outlining the raft agenda. medical educator: so, welcome to your raft. let me just review quickly what, um, what the ritual is. so, the first part is your presentation of, um, what you’ve been doing since you arrived, um, your self-assessment on the, the competencies that you completed, and then the plan that you have for between now and the next raft, and we’ll have an opportunity to give you some feedback, um, ask and answer questions. another example of managing the meeting that frequently occurred in the pgy1 raft was when a faculty member would invite the resident to transition to a new topic by indicating a shift to the next topic of the meeting agenda. faculty 1: so, would you like to talk about sort of segueing away from this idea of where you are right now? one of the activities for this initial iep [individualized education plan] was, you know, a self-assessment of the competencies. resident: okay. faculty 1: how did you go with that? in this example, the faculty member not only signals a shift in topics is needed, but follows the resident’s agreement with a second, more direct invitation to explain how the self-assessment went. at first, the resident does not seem to recognize that the invitation to shift topics is also an invitation to manage the discussion; and therefore, the faculty member finds a way to hand over the facilitation of the topic by asking the resident a direct question about it. in contrast, the resident in the pgy3 raft initiates a shift in topic by introducing a discussion about her/his practice improvement (pi) project. although a section of the soap note is labeled plans for upcoming raft, the resident is not prompted by anyone else on the team to start that part of the conversation and the resident further manages the meeting by identifying a need to receive feedback on her/his pi project. resident: so plans for upcoming raft. um, looking at all the portfolios, um, two things that stand out that i need to do. i need to finish my research project...the other big thing that i need to work on is a performance improvement project from the administrative and leadership portfolio, so i was hoping to get some feedback on what i’ve done so far and where i could go with this…i definitely did pdsa [plan, do, study, act cycle]. unlike the faculty members’ explicit management of the agenda items in the pgy1 meetings, the third-year residents initiated topic changes (e.g., bringing the group back on track when a side conversation opened up) and introduced new topics that were relevant but not part of the raft agenda (e.g., how to best manage a conflict in the clinic). in this way, the residents’ capacities as activated learners were evident in the sharing of meeting facilitation leadership with faculty members. a final set of themes described a different group dynamic between pgy1 and pgy3 raft meetings that seemed to indicate a higher degree of familiarity and comfort among the members of the team; specifically, explicit comments by residents about the safety of the interaction, a core goal in supporting an activated learner. residents also commented on a more informal flow of conversation with cooperative overlaps and storytelling and less explicit discussion of the formal elements of the meeting (parts of the soap note, for example, and forms to be completed) – themes that were not identified in the pgy1 transcript analysis. expressing and managing emotions the communication in both sets of meetings included expressions of emotion (e.g., trepidation, anxiety, confidence, and pride), expressions of humor, and statements of gratitude and appreciation. the first-year meetings also included personal storytelling by the resident and discussions of self-care in response to specific prompts by raft members. the theme of self-care was included in this category because it was typically discussed in the context of managing stress as a lifelong learner or maintaining a sense of coping or well-being as a resident. third-year meetings contained additional examples of humor and storytelling shared among faculty and residents, emerging as a consequence of less formal interaction. in some cases, this interaction was initially coded as side conversation, but when considered as a pattern that occurred across the pgy3 meetings, collaborative storytelling and cooperative humor seemed to indicate that residents were more confident and interacted more as peers within the team as compared with the pgy1 raft meetings. in the following example of a pgy1 session, the faculty member enquires about the resident’s self-care and the stress s/he mentioned earlier in the session. [qualitative research in medicine & healthcare 2017; 1:6944] [page 115] article no n c om me rci al us e o nly faculty: so, one of the things i’m wondering about is…you also talked a little bit about how sometimes in your thinking you kind of just stress out or you think about the things that stress you out, and so i’m wondering how hard or easy it is for you to name that to ask for help to get the help you need to manage that in ways that are helpful for you? the faculty member prompts a conversation about how the resident is managing her/his emotions based on a previous statement the resident made about things that stress her/him out. in this way, the faculty member is supporting the resident to share and encouraging her/him to reflect on the emotion and be an activated learner by expressing how easy or difficult it is to ask for help when s/he is stressed out. this brief example highlights how the faculty member is encouraging learner activation in the context of asking the resident to reflect on the emotion and management of it. in addition, the codes related to emotion in the pgy1 meetings include examples of raft faculty members expressing encouragement and support, residents expressing appreciation, and residents’ occasional reference to feeling vulnerable or nervous about the residency. in pgy3 meetings, there is a shift in who initiates the disclosure of emotion. residents were more likely to instigate an expression of emotion as exemplified in the following quotation: resident: so yeah, i feel the need to take a deep breath. we had in our family a little crisis this morning, so i was up early and i’m a little high on caffeine right now. everything’s okay but we had to deal with that. ([medical educator]: uh huh) so a little emotional from it, too, so i’m sorry about that. in this example, the resident begins the meeting by disclosing and managing her/his emotions without being prompted. not only does the resident name how s/he is feeling, s/he pauses to take a deep breath and disclose a family crisis that occurred earlier in the day. in naming her/his emotional state, the resident self-activates her/his involvement in the meeting and demonstrates her/his development of skills to both name and manage her/his emotional state. one particular difference identified throughout the analysis that is worth noting was the residents’ expressions of a negative emotion. in the pgy1 year, residents might briefly name a negative emotion (e.g., annoyance) but underplay its importance as in this example: resident: one doctor said i wouldn’t do very well with, like, critical care stuff. i was kind of annoyed. although the resident is able to name dislike of the doctor’s statement, there is no additional statement addressing how he or she will manage the negative emotion. in the pgy3 raft sessions, residents engaged in more extended discussion of negative emotional states as well as efforts to manage them. resident: i feel rested […] i guess i’ve been superstressed lately about the future, um, and finding a job and like keeping up with everything here. um, and ignoring a lot of things about finding a job, um, and then other like personal stuff, which i’ve been [discussing with my advisor] a lot and, um…all sorts of stuff that came up. um, i started going to [community-based support group] meetings, which is pretty good. unlike the example in the pgy1 session, the pgy3 resident names the emotional state and mentions how s/he is managing the stress by discussing it with her/his advisor and attending support group meetings. interestingly, the resident also begins the example with a positive statement, i feel rested but quickly follows it with i guess i’ve been super-stressed… although the resident begins on a positive note with her/his state of wellbeing, s/he doesn’t hesitate to express the stress s/he’s been feeling. in this way, the resident behaves as an activated learner by demonstrating the skills s/he has learned in managing stress and feeling safe to disclose how s/he feels to her/his fellow raft members. modeling reflective practice and mindfulness interaction related to reflective practice was similar in firstand third-year meetings, with residents engaging in self-reflection and self-assessment after being prompted by a faculty member. a subtle but important difference between the two sets of meetings was in the fluid, integrated quality of reflective communication in pgy3. whereas the structure of the meeting and prepared educational soap note primarily dictated when and how the first-year residents would reflect on their education, third-year residents and faculty members typically engaged in reflection as part of an emergent dialogue about resident performance rather than being prompted by the structure of the meeting itself. for example, in a pgy1 session, the resident was prompted to comment on her/his video review of a patient encounter and self-identify a learning need. resident: i had a patient who functions well with his english but does not really comprehend and it wasn’t apparent to me during the exam, but then i’m watching and like, “wow, i’m spending a lot of time trying to understand him and he’s not entirely understanding me”. so that was kind of eye-opening. in the following pgy3 meeting, the resident independently (without prompting) described a global insight into her/his own perspective on family practice. resident: i looked back and realized i’ve been doing a lot and growing a lot since april, the last time we met, um, and just thinking about where i was at that time and seeing patients and questioning my abilities and now seeing a full schedule, feeling like i can handle it, working in to handling a med student as well, and i’m really feeling a lot more confident, um, in my abilities, which is a big deal and, um, i definitely have developed a clinical style in the office which is kind of fun. it’s like this is how i’m practicing medicine…realizing on a very real level [page 116] [qualitative research in medicine & healthcare 2017; 1:6944] article no n c om me rci al us e o nly what chronic illness means to people and hearing them talk about it, [was] really enlightening for me, and i was able to take some lessons that i learned from just those visits back to the office and remember what i was hearing from my patients, so i’m feeling that i’m moving from competent to proficient as i’m working on this. this extended comment was given in response to the medical educator’s opening prompt: we’re going to begin with your narrative of what you’ve been doing…the resident’s response – which has been significantly cut from its original 49 lines – demonstrates both the depth and breadth of her/his reflective practice as an activated learner. many of the third-year residents illustrated similar levels of reflexivity in long monologues about their wellbeing, completion of residency activities, and perspectives about themselves as family physicians, to name a few topics. these lengthy, reflective moments by the residents were often unprompted or in response to brief, non-specific questions by the raft faculty members. similar to disclosures of emotion, the resident demonstrates her/his trust in her/his fellow raft members to share personal insights and be actively involved in ongoing reflective practices as part of her/his education. finally, there were examples of reflective practice and mindfulness involving the residents’ self-assessment of competence. in the following pgy1 example, the faculty member prompted the resident to reflect on her/his competency in terms of assessing readiness for more independent clinical practice. faculty: so one of the questions i would need to ask you is when you think about the outpatient setting and you think of we have physicals and pap tests and preventive care mixed in sometimes with all the complex behavioral stuff, um, are you at a point now where you feel really confident to jump into that vs. a, you know, few more weeks of sort of hand-holding, working in tandem with somebody while you learn the ins and outs of [the emr system]. in this example, the faculty explicitly asks if the resident feels confident to provide care independently or if s/he feels the need for continued assistance. as an intern, the resident does not behave as an activated learner by initiating a self-assessment. in the pgy3 year, there is less prompting by the faculty and more instigation by the residents to reflect on internal processes to determine their own competence. in the following example, the faculty members ask for clarification when the resident indicates discomfort with the idea of claiming to be competent; the resident, however, is the one who names his/her sense of competence. faculty 1: because if you were to actually name, use a reference of competence, what would you have to accept…about yourself? resident: like if…that i’m getting more competent, becoming more competent… faculty 2:…do you feel there is barrier inside of you or outside that’s causing you to not advance? resident: i don’t think that i’m not advanced. i feel comfortable. i think that, you know, before i used to look at my schedule and have a headache and have palpitations and be nervous and like…but now i feel like, whatever. it’s all right, i can manage, whatever it is. in this exchange, the faculty members attempt to understand the resident’s level of readiness for independent practice and her/his associated feelings. by asking a few questions, the resident names her/his growth in competence and confidence in managing patient care as a result of both prior self-reflective practice and the raft group interaction. the example also highlights the resident’s disagreement with the faculty’s suggestion that s/he is not advancing and plays an active role in assessing her/his own competence. rq3: what does the residents’ participation in raft meetings imply about activated learning, particularly regarding the residents’ role? in the category of advising, raft interaction indicated a shared practice of integrating feedback, assessment, reflection, and advice-giving into educational decision-making that included the resident as a key player on the team. by the third-year raft meetings, examples of “advice-giving” by faculty members were less frequent, and advice was typically integrated into dialogue and negotiated between resident and faculty members. the theme of offers of help and guidance was not noted in the pgy3 meeting transcripts, but there were numerous examples of efforts to hand decision-making back to the resident, which implicitly communicated both confidence in the residents’ ability to problem-solve independently, and an expectation that they should do so in the context of the raft conversation. the category of expressing and managing emotion produced the widest range of themes describing interaction, and the most consistency between firstand thirdyear meetings in terms of shared themes. both sets of meetings integrated expressions of emotion, statements of encouragement and gratitude, and humor, and descriptions of self-care; although the later meetings were characterized by more fluid and integrated references to emotions and self-care as residents told and reflected on their own stories of residency. the raft interaction established a practice of expressing and discussing emotions as part of the residents’ education, rather than treating the discussion of emotions as belonging only to a discursive context such as psychological counseling or professional support group. by encouraging disclosure of and reflection on the emotions that residents experienced during their education – including those experienced in response to patient care – the raft interaction signaled that reflecting on one’s emotions serves an important purpose in activated learning. in some cases, emotional disclosures resulted in expressions of empathy and support, and in other cases residents were prompted to reflect on emo [qualitative research in medicine & healthcare 2017; 1:6944] [page 117] article no n c om me rci al us e o nly tions (such as reluctance to claim competence) in order to facilitate their learning. activities related to managing the process of the meeting were at first the purview of faculty members and later became the responsibility of residents. in many cases, residents simply adopted more of a leadership role by the pgy3 meeting and took responsibility for identifying what topics they wanted to address at what time during the meeting. raft faculty members continued to influence the flow of conversation by asking questions or (in the case of the medical educator) reminding the group about the raft agenda, but the general movement of the responsibility for the content of the meeting from faculty to resident implied that educational planning and determining competence were the purview of the residents as activated learners. also by the end of residency, communication that indicated self-reflection and mindfulness was seamlessly integrated into conversations of educational progress rather than needing explicit prompting from the faculty members. thus, the raft interaction demonstrated that selfreflection, particularly in the context of conversations with others, is an expected and worthwhile feature of activated learning. residents became comfortable telling stories of their educational experiences and reflecting on what those experiences meant for them as learners and as physicians anticipating independent future practice. discussion analysis indicated that interaction during the raft meetings addressed practical exigencies of learning such as setting goals and establishing educational activities (advising), as well as the facilitation of the meeting itself (managing the process of the meeting). however, even in communication that served administrative functions, residents’ engagement in these functions by their third year indicated increasing activation of their learning. familiarity with the process and comfort with the faculty members may account for some of the changes in interaction observed during third-year meetings. however, the more fluid integration of topics such as self-care and emotional responses to learning, as well as the occasional push back from thirdyear residents when they disagreed with faculty members’ ideas suggest that residents also had become comfortable with a more active and authoritative role in their learning. a number of implications may be offered. i) the raft provides a planned context in which skills of activated learning – including self-reflection and self-assessment, mindfulness, emotional disclosure and reflection – can be encouraged and practiced. ii) by recasting learners and teachers as collaborators in educational processes, the raft offers an alternative to traditional models where assessment and educational planning are separate activities and evaluation of learners is accomplished by faculty members independent of dialogue with residents. in this model, the residents take on more responsibility for triangulating others’ feedback with their self-assessment to inform educational problem-solving which, ideally, will continue as part of their professional, lifelong learning. iii) the process of encouraging activated learning is developmental in that advising by raft faculty members evolves with the resident. first-year residents can receive more direct advice-giving and problem-solving and, by third year, residents can be encouraged to assume responsibility for identifying and meeting their educational needs. iv) the four major categories of interaction during the raft, supported by its formal structure, are complementary in function (e.g., advising is accomplished with emotional awareness and sensitivity; reflecting on performance is a key aspect of advising; all play a role in supporting residents’ activated learning). it should also be noted that in order to provide resident assessment and advising meetings that encouraged the residents to adopt activated learning behaviors, substantial discussion occurred among the faculty, not only about the structure that would be required but also about the communicative processes and the values that should underlie the approach, with trust and safety as core goals. furthermore, the raft (or any similar process) depends upon the culture of the residency, including complementary educational innovations and the members’ investment in being self-reflective and mindful, and applying emotional sensitivity while interacting with one another, both within and outside the assessment process. the data set was robust for identifying the characteristics of this group’s interaction as it differed across two time points. however, it represented only one cohort of residents and so it cannot be claimed that the sub-themes would replicate exactly with another cohort. future research might expand the sample and repeat the analysis with examples of interim (special purpose) raft meetings. also, reflecting on the raft as an educational intervention beyond activated learning, a number of questions remain, particularly regarding its impact on residents’ development of communication skills and professionalism, team-based practice, and relationship-centered care of patients. as it stands, however, the categories and descriptions of interaction from this analysis allow other medical education programs to consider the influence of discourse and how discursive contexts (such as assessment and advising meetings) can serve as opportunities to encourage, guide, and observe residents’ adoption of activated learning practices. like any other educational experience, the raft is deemed successful when residents and faculty alike are able to transfer skills of activated learning from the raft into other educational or clinical contexts. one third-year resident expressed the value of the raft meetings as a time for reflection and self-assessment: i appreciate having to go through this process because…it’s an eye-opener…as to [how] far you’ve gone or what you’ve not done that you should have [page 118] [qualitative research in medicine & healthcare 2017; 1:6944] article no n c om me rci al us e o nly done and also what you plan on doing in the future so, it’s actually…a good thing for me to be able to…sit down and have it on paper and be able look it from my previous raft and compare it. the hope and expectation is that, having practiced these skills of active learning in residency, the residents will retain an active orientation towards their learning, and these skills will sustain them throughout their professional lives. references 1. knowles ms. the modern practice of adult education: from pedagogy to andragogy. englewood cliffs, nj: cambridge book company; 1988. 2. knowles ms, holton iii ef, swanson rd. the adult learner: the definitive classic in adult education and human resource development. 6th ed. amsterdam: elsevier; 2005. 3. shin jh, haynes rb, johnston me. effect of problembased, self-directed undergraduate education on life-long learning. cmaj 1993;148:969-76. 4. loyens sm, magda j, rikers rm. self-directed learning in problem-based learning and its relationships with self-regulated learning. educ psychol rev 2008;20:411-27. 5. miflin bm, campbell cb, price da. a conceptual framework to guide the development of self-directed, lifelong learning in problem-based medical curricula. med educ 2000;34:299-306. 6. mamary e, charles p. promoting self-directed learning for continuing medical education. med teach 2003;25:188-90. 7. murad mh, coto-yglesias f, varkey p, et al. the effectiveness of self-directed learning in health professions education: a systematic review. med educ 2010;44:1057-68. 8. lindvall cm, bolvin jo. the role of the teacher in individually prescribed instruction. educ technol 1970;10:37-41. 9. rohwer jr. wd, levin jr. elaboration preferences and differences in learning proficiency. paper presented at the annual meeting of the american educational research association. 1970 march, minneapolis, mn. 10. thanasoulas d. what is learner autonomy and how can it be fostered. internet tesl j 2000;6:37-48. 11. hafferty fw. beyond curriculum reform: confronting medicine’s hidden curriculum. acad med 1998;73:403-7. 12. hafferty fw, franks r. the hidden curriculum, ethics teaching, and the structure of medical education. acad med 1994;69:861-71. 13. haidet p, stein hf. the role of the student-teacher relationship in the formation of physicians. the hidden curriculum as process. j gen intern med 2006;21;s16-20. 14. al-eraky mm, marei hf. professionalism in medical education. adv health sci educ theory pract 2015;1:37-40. 15. hilton s, southgate l. professionalism in medical education. teach teach educ 2007;23:265-79. 16. rhodes r, cohen d, friedman e, muller d. professionalism in medical education. am j bioeth 2004;4:20-2. 17. apker j, eggly s. communicating professional identity in medical socialization: considering the ideological discourse of morning report. qual health res 2004;14:411-29. 18. jarvis-selinger s, pratt dd, regehr g. competency is not enough: integrating identity formation into the medical education discourse. acad med 2012;87:1185-90. 19. pratt mg, rockmann kw, kaufmann jb. constructing professional identity: the role of work and identity learning cycles in the customization of identity among medical residents. acad manage j 2006;49:235-62. 20. green la, jones sm, fetter g jr, pugno pa. preparing the personal physician for practice: changing family medicine residency practice to enable new model practice. acad med 2007;82:1220-7. 21. shapiro j. parallel process in the family medicine system: issues and challenges for resident training. fam med 1990;22:312-9. 22. kernochan ra, mccormick dw, white ja. spirituality and the management teacher reflections of three buddhists on compassion, mindfulness, and selflessness in the classroom. j manag inq 2007;16:61-75. 23. wolff-burke m, ingram d, lewis k, et al. generic inabilities and the use of a decision-making rubric for addressing deficits in professional behavior. j phys ther educ 2007;21:13-22. 24. kern de, branch wt jr., jackson jl, et al. teaching the psychosocial aspects of care in the clinical setting: practical recommendations. acad med 2005;80:8-20. 25. haidet p, kelly pa, chou c. characterizing the patient-centeredness of hidden curricula in medical schools: development and validation of a new measure. acad med 2005;80:44-50. 26. haidet p, dains je, paterniti da, et al. medical student attitudes toward the doctor-patient relationship. med educ 2002;36:568-74. 27. hafler jp, ownby ar, thompson bm, et al. decoding the learning environment of medical education: a hidden curriculum perspective for faculty development. acad med 2011;86:440-4. 28. stein hf. american medicine as culture. boulder, co: westview press; 1990. 29. stern dt. in search of the informal curriculum: when and where professional values are taught. acad med 1998;73:s28-30. 30. orchard ca, curran v, kabene s. creating a culture for interdisciplinary collaborative professional practice. med educ online 2005;10:1-13. 31. atkinson p, gregory m. constructions of medical knowledge. in: holstein ja, gubrium jf, eds. handbook of constructionist research. new york: guilford; 2008, pp 593-608. 32. berger po, luckmann t. the social construction of reality: a treatise in the sociology of knowledge. new york: anchor books; 1967. 33. foster e, bochner ap. social constructionist perspectives in communication research. in: holstein ja, gubrium jf, eds. handbook of constructionist research. new york: guilford; 2008. pp 85-106. 34. gergen kj. realities and relationships: soundings in social construction. cambridge, ma: harvard university press; 1994. 35. foucault m. the birth of the clinic: an archaeology of medical perception. new york, ny: vintage books; 1994. 36. loseke dr, kusenbach m. the social construction of emotion. in: holstein ja, gubrium jf, eds. handbook of constructionist research. new york: guilford; 2008. pp 511-30. 37. mcnaughton n. discourse(s) of emotion within medical education: the ever-present absence. med educ 2013;47:71-9. 38. rice s. the social construction of “disabilites”: the role of law. educ stud 2003:169-80. [qualitative research in medicine & healthcare 2017; 1:6944] [page 119] article no n c om me rci al us e o nly 39. lorber j, moore lj. gender and the social construction of illness. 2nd ed. lanham, md: altamira press; 2002. 40. seale c. constructing death: the sociology of dying and bereavement. cambridge, uk: cambridge university press; 1998. 41. foster e, biery n, dostal j, larson d. raft (resident assessment facilitation team): supporting resident well-being through an integrated advising and assessment process. fam med 2012;44:731-4. 42. acreditation council for graduate medical education. common program requirements. chicago, il: acgme; 2016 jul 1. available from: http://www.acgme.org/portals/0/pfassets/programrequirements/cprs_07012016.pdf 43. sargeant j. toward a common understanding of self-assessment. j contin educ health prof 2008;28:1-4. 44. sargeant j, mann k, van der vleuten c, metsemakers j. “directed” self-assessment: practice and feedback within a social context. j contin educ health prof 2008;28:47-54. 45. sargeant jm, mann kv, van der vleuten cp, metsemakers jf. reflection: a link between receiving and using assessment feedback. adv health sci educ theory pract 2009; 14:399-410. 46. plant jl, corden m, mourad m, et al. understanding selfassessment as an informed process: residents’ use of external information for self-assessment of performance in simulated resuscitations. adv health sci educ theory pract 2013;18: 181-92. 47. hirschmann k. blood, vomit, and communication: the days and nights of an intern on call. health commun 1999; 11:35-57. 48. colbert cy, dannefer ef, french jc. clinical competency committees and assessment: changing the conversation in graduate medical education. j grad med educ 2015;7:162-5. 49. bellini lm, shea ja. mood change and empathy decline persist during three years of internal medicine training. acad med 2005;80:164-7. 50. martin ar. stress in residency: a challenge to personal growth. j gen intern med 1986;1:252-7. 51. hodges bd, martimianakis ma, mcnaughton n, whitehead c. medical education…meet michel foucault. med educ 2014;48:563-71. 52. phillips n, hardy c. discourse analysis: investigating processes of social construction. thousand oaks, ca: sage; 2002. 53. corbin j, strauss a. basics of qualitative research: technologies and procedures for developing grounded theory. 4th ed. thousand oaks, ca: sage; 2015. 54. watzlawick p, beavin jh, jackson dd. pragmatics of human communication. new york, ny: norton; 1967. [page 120] [qualitative research in medicine & healthcare 2017; 1:6944] article no n c om me rci al us e o nly layout 1 [qualitative research in medicine & healthcare 2017; 1:6219] [page 81] introduction seizures are fear-inducing experiences for those having them and for their friends and family members.1-3 seizures comprise an estimated 1%-2% of all emergency department (ed) visits per year.4 despite that fact that patient-centered outcomes and shared decision-making models are widely promoted in healthcare today, no research has attempted to understand the ed experience from the point of view of first-time seizure patients and their families, including their experiences of the setting and pace of the typical components of a first-time seizure evaluation, diagnosis and treatment. the current ed practice standard for uncomplicated first time generalized seizures in adults evaluates patients for toxic, metabolic, structural, cardiogenic and systemic causes.5 if no abnormalities are identified, patients are instructed to refrain from at-risk activity (e.g. driving, swimming) and told to arrange follow-up with a neurologist. since the standard neurologic evaluation for first-time seizures includes performance of an electroencephalogram (eeg) as an outpatient, patients must undergo an eeg after ed discharge.5,6 research has demonstrated the importance of performing early eegs among first-time seizure patients for timely identification of epilepsy, as rapid diagnosis and immediate initiation of antiepileptic drug (aed) therapy after an epileptic seizure significantly reduces seizure risk in the short term by about 35%.5,7 however, the barriers to appropriate outpatient follow-up and the important patient and family centered outcomes related to first time seizures in adults are poorly understood. in this paper, we utilize the concept of patient-centered outcomes to consider the patients’ and families’ experiences when deriving treatment options for first-time seizure patients. eegs in the emergency department there has been virtually no research on emergency patient-centered outcomes: a qualitative exploration of patient experience with electroencephalograms in the emergency department christine s. davis,1 sandra k. beverly,2 jackeline hernandez-nino,2 andrew j. wyman,2 andrew w. asimos2 1university of north carolina at charlotte, department of communications; 2carolinas healthcare system, department of emergency medicine, charlotte nc, usa abstract the primary objective of this qualitative project was to understand the experience of patients who had first-time seizures and who did, and did not, have electroencephalograms (eegs) performed in the emergency department (ed) as part of their initial evaluation, so as to refine the diagnostic and therapeutic approach to these patients and transform the standard of care for first-time seizures by focusing on outcomes as defined by patient experiences and expectations. in this paper, we show that, regardless of the diagnostic and therapeutic approach patients are given in the ed, patients and caregivers trust that health care providers will perform the standard of care consistent with the current medical practice for first-time seizures. however, performing eegs in the ed and initiating appropriate anticonvulsant therapy for those patients who are at high risk for future seizures addresses patient needs by offering patients a sense of security and control over their medical condition and expediting appropriate follow up care, as long as clearly stated written diagnostic, treatment, and referral instructions are provided upon discharge. correspondence: christine s. davis, university of north carolina at charlotte, department of communications, 9201 university city blvd, charlotte, nc 28223, usa. e-mail: csdavis2@uncc.edu key words: first-time seizure, healthcare, electroencephalograms. contributions: all authors contributed equally. conflict of interest: the authors declare no potential conflict of interest. funding: this work was supported by an emergency medicine foundation 2014-2015 resident research grant and a carolinas healthcare system internal grant. conference presentation: this study was presented at the acep annual meeting in october of 2015 in boston, massachusetts. received for publication: 4 august 2016. revision received: 10 january 2018. accepted for publication: 10 january 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright c.s. davis et al., 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:81-92 doi:10.4081/qrmh.2017.6219 qualitative research in medicine & healthcare 2017; volume 1:81-92 no nco mm er cia l u se on ly department (ed) experiences or post-ed experiences among patients with seizures, and little research examining the effects of eeg performance in the ed after a firsttime seizure. eegs are a valuable tool to evaluate the functional status of the brain. researchers have determined that first time seizures are related to an epilepsy diagnosis in 15%-47% of cases based on eeg testing.8,9 as a case-in-point, researchers conducting a recent study of ed eeg performance found an epilepsy rate of 21% in adult first-time seizure patients who were candidates for discharge from the ed.10 in this study, all of these patients were started on aed therapy immediately upon discharge and followed up by a neurologist in two weeks. conversely, first time seizure patients who are discharged from the ed without undergoing an eeg (and who ultimately have undiagnosed epilepsy) are at risk for recurrent seizures. in addition, the resulting delay in following up with a neurologist and in beginning anticonvulsant therapy is also medically problematic. for some patients, an inability to follow-up with a specialist after being discharged from the ed results in substantially delaying or entirely neglecting appropriate follow-up care.10 eeg use in the ed is often limited by the availability of trained staff, time limitations, and financial constraints. yet, physicians are better able to diagnose and treat patients when they have the eeg results in hand. for example, researchers examining the use of eegs in the management of patients who present with altered mental status reported that an eeg helped to establish the diagnosis in 56% of the cases, changed diagnostic management in 49% of cases, and changed treatment plans in 42% of the cases.11 similarly, praline, grujic, corcia, and colleagues12 note that eegs ordered on an emergent basis in the ed as well as in the hospital contributed to the diagnosis in 78% of cases examined. sadleir and ingrid13 report in a study performed on children presenting with first-time seizures that the rate of epileptiform discharge (uncontrolled electrical discharges in the brain associated with epilepsy, identified through eegs) was 57% in patients on an eeg performed within 24 hours of the seizure, and another study of eegs performed in adults and children within 24 hours of a firsttime seizure found a rate of epileptiform discharge of 47%.9 importantly, this study demonstrates that early eeg performance had a higher rate of finding epilepsy (51%) compared to 34% when eegs are performed later. the use of eegs in the ed for seizure patient management is a feasible option if utilized properly.14,15 eegs administered in the ed, and remotely interpreted by an on-call epileptologist, have been found to allow providers to initiate appropriate therapeutic treatment earlier as well as arrange for close outpatient follow up.10 patient-centered outcomes research in the patient-centered outcomes and shared decisionmaking model widely promoted in healthcare today and mandated by the 2010 affordable care act, patients and families actively participate in their own treatment decision making and planning. patient-centered care is a model of shared power between the patient and the medical provider16 defined as care that is respectful and responsive to individual patient preferences, needs, and values and customizes treatment recommendations on the basis of informed, shared decision-making […] development of patient knowledge, enhancement of skills needed for self-management of illness, and preventive behaviors.16 researchers studying patient-centered care have concluded that including patients and families as partners in the decision process enhances clinical outcomes and treatment compliance, leads to more cost-effective healthcare, and is a more ethical choice.17-21 however, balancing evidence-based medicine with patient choice is a challenge.17 two keys to implementation of this model are effective patient-provider communication and information management.16,17,22 essential to this model is the inclusion of patient and family experiences, needs, and perspectives, including sources of distress, social issues, and behavioral issues;16 with therapeutic information and knowledge, and by aligning medical decisions with health outcomes that are relevant to patients and families.18,20,22 the concept of patient-centered outcomes is one of shared voice-patients and families being heard, respected, understood, and considered by healthcare providers.18,20,22 a focus on patientcentered outcomes does not preclude clinical or therapeutic considerations, but this focus by definition also incorporates consideration of quality of life, access to care, and patient preferences.18,22,23 so important is this concept of patient-centered outcomes that the patient-centered outcomes research institute (pcori) – created in 2010 by the aca – supports extensive research in this area.19,20 study objectives the primary objective of this qualitative project is to understand the experience of patients who had first-time seizures and who did, and did not, have eegs performed in the ed as part of their initial evaluation, so that the approach to their care could be refined. this study is part of a larger project focusing on both quantitative and qualitative outcomes defined by patient experiences and expectations. in all of this related research, the overarching goal is to transform the standard of care for first-time seizure patients to improve the experience for both patients and providers. in this portion of the research, we sought to specifically address the following research questions: rq1: what was the experience like (both in the ed and after) for patients and families following a first-time seizure experience? rq2: what are the important patient outcomes following a first-time seizure experience? rq3: what are patients’ and families’ expected standards of care for treatment of first-time seizures in the ed? [page 82] [qualitative research in medicine & healthcare 2017; 1:6219] article no nco mm er cia l u se on ly rq3: how might patients and families’ experiences of first-time seizures be shaped by performance of eegs in the ed? materials and methods focus groups are a qualitative research tool that capitalizes on group processes and interpersonal interactions to gain rich experiential data about a topic of interest.24-27 focus groups bridge the emic-naturalistic data and the etic-researcher imposed data, and are especially useful for understanding the patient experience and determining patient centered outcomes as they are discussed in a group setting.27 we conducted four homogeneous focus groups among i) patients with seizures who had an eeg performed in the ed; ii) patients with seizures who did not have an eeg performed in the ed; iii) family members of adult patients recently diagnosed with seizures; iv) seizure patient advocates. the focus groups each had between three and nine participants, for a total of 22 focus group participants. we attempted to hold one additional group with patients with seizures without health insurance coverage but only one participant attended that session, so we conducted a personal in-depth interview with her instead. we did have a significant no show rate for some of the focus groups, so, following the focus groups, we conducted seven telephone interviews to increase diversity in the sample and to further inform study findings about experiences of patients with no health insurance and nonenglish speaking hispanic first-time seizure patients. in all the focus groups and interviews, we gathered information about: i) perceptions of the ed experience; ii) perceptions of the experience obtaining, or not obtaining, an eeg in the ed; iii) perceptions of treatment during and after the ed; iv) their experience of the follow-up care; v) perceptions of the experiences after treatment; vi) desired outcomes for treatment (during and after); vii) perceptions of factors that facilitated or hindered follow-up care; and viii) perceptions about the care in general. the groups and interviews were facilitated by the first author who is a university researcher, the second author who was an emergency medicine resident, and the third author who is an emergency medicine researcher and is proficient in spanish. we audio and video recorded the focus group sessions and audio recorded the interviews. each session lasted approximately 90 minutes. recruiting and sampling using purposive and convenience sampling, we recruited participants from the medical center’s ed and local neurology and epilepsy clinics. participants were current or former patients of referring physicians, were family members of current or former patients, were participants in a prior first-time seizure research project who indicated agreement to participate in future research, or were seizure patient advocates recruited from a local epilepsy center. specifically, the focus group and interview participants (and their family members) who had an eeg performed in the ed were recruited from an ongoing quantitative research project studying eeg performance in first-time seizure patients.10 the focus group and interview participants (and their family members) who did not have ed eegs performed were recruited from a regional healthcare system’s neurology and epilepsy clinics. we recruited seizure patient advocates from local and regional epilepsy support groups. the focus group and interview participants who had an eeg performed in the ed and who were recruited from the ongoing quantitative research project studying eeg performance in first-time seizure patients had a follow up appointment made for them before they were discharged from the emergency department and – as a result of being enrolled in the ongoing quantitative study – were guaranteed the opportunity to follow up with a neurologist within two weeks of their ed visit irrespective of insurance status. we do note that this may have influenced their perceptions about the impact of an ed eeg in facilitating follow-up. there were five individuals who participated in the focus group for patients had who had an eeg in the ed. all five of these individuals were insured. four of these individuals were diagnosed with epilepsy based upon the eeg that they received in the ed. all of these individuals were started an antiepileptic medication. the remaining individual had an abnormal eeg but was not diagnosed with epilepsy and this person was not started on medication. the five interview participants who had an eeg in the ed were not insured, as we purposely sought out noninsured patients for these interviews to gain an additional perspective we felt was missing from the focus groups alone. one of those five was a non-english speaking woman of hispanic ethnicity who was purposively included for her ethnic perspective. all of these participants had normal eegs and were not started on antiepileptic medications. there were three participants in the focus group for those patients who did not have an eeg in the ed. in addition, one of the telephone interviews was with a patient who did not have an eeg in the ed. three family members and two patients participated in the focus group for family members. family members included a father, a sister and a significant other. one of the two patients in this group did not have an eeg in the ed and the other did have an eeg in the ed which was read as epileptic, but the patient was not started on an antiepileptic medication. in addition, the phone interviews included one family member of a person who did not have an eeg in the ed and did not have health insurance. there were a total of nine participants in the focus [qualitative research in medicine & healthcare 2017; 1:6219] [page 83] article no nco mm er cia l u se on ly group for advocacy members, which included the director of the local epilepsy foundation, family members of patients with epilepsy, and patients who were diagnosed with epilepsy. as we stated, we conducted an interview with the one patient who attended the focus group for the patients who did not have insurance. all study participants were age 18 and older and were able to consent. we gave participants 15 us dollars ($) gift cards for their participation and provided them with a meal during the focus group sessions. our study was approved by the institutional research boards of carolinas healthcare system and the university of north carolina at charlotte, and we reviewed informed consent with participants when they were invited, individually when they arrived for the focus group session, and again as part of the introductory comments in the session. coding and analysis utilizing charmaz’s28 emergent approach to research, analysis and questioning began early in the process and continued throughout all stages of research. we debriefed possible findings after each focus group session and revised the facilitation guide as the group sessions progressed. we added the seven telephone interviews to address questions and gaps that emerged as we moved through the data collection and analysis stages. of course, focus groups themselves are a non-hierarchical method in which participant voice is more equalized than in positivist or social science based methods, and in which participant construction of meaning is key,26 so the groups themselves represented a partnership between study participants and researchers to make meaning of the experience. we transcribed all audio and videotapes word-for-word indicating conversational turns and speaker changes. we coded and analyzed data by means of charmaz’s28 constructivist approach to grounded theory coding, utilizing a systematic, multi-step coding process starting with line-by-line coding and employing the constant comparison method to derive categories and themes. this is an inductive approach to data analysis, which starts with a broad research question and narrows down to understanding a phenomenon based on the data itself. we established a qualitative approach to validity and reliability with the use of multiple coders and a systematic process in which all five members of the research team each coded the transcripts individually, first making multiple passes through the transcripts to immerse ourselves in the data, jotting down analytical notations, including initial thoughts and ideas. we then each individually moved from this stage to development of a list of potential themes and ideas. the research team then met and compared and debriefed their initial analytical ideas. as a group, we created an initial list of metacodes and thematic categories which represented the focus group and interview findings. the first two authors then made additional multiple passes through the data to further refine the categories and connect the transcript text to each code through the constant comparison process by looking for similarities and differences in the data and the emerging categories. we compared each emerging category with each other category and combined, divided, and sorted the data into final themes until all of our data fit into categories.29 the results reported here represent the final categories and are illustrated with representative quotes from the transcripts. results seizures are experienced as traumatic emergencies and, coupled with the memory loss and confusion firsttime seizure patients experience surrounding the ed visit due to their medical state at that time, for the majority of patients, this experience is fear inducing, unknown, unexpected, and stigmatizing. in addition, for some patients, the first-time seizure experience has negative financial ramifications, adding to the trauma of the experience. the medical testing, treatment, and discharge experience in the ed is confusing to patients. they don’t understand or clearly remember what they are told in the ed. in addition, referral information is inadequately provided and too long a wait for follow-up care, resulting in an anxiety-provoking experience. regardless of the diagnostic measures offered to patients in the ed, for the most part, patients trust medical professionals to act in their best interest during this time; however, patient experiences suggest that earlier diagnostic testing and provision of medication and specialist referrals would ease patient distress, as long as clearly stated written diagnostic, treatment, and referral instructions are provided upon discharge. detailed discussion of the categorical findings follows. seizures are experienced as traumatic emergencies experience is traumatic, fear inducing and stigmatizing the seizure experience is completely unexpected and sudden, occurring sometimes at night, sometimes in public or when around others, often in dangerous, terrifying, embarrassing, or stigmatizing situations. the seizure itself does not last long, although the overall experience might feel interminable. participants describe a chaotic, out of control experience, compounded by physical incidents such as a bit tongue, loss of bladder control, agitation, dizziness, confusion, loss of consciousness, memory loss, vision loss, shaking, and incoherence. participants emphasize undergoing emotions surrounding the seizure experience of feeling different, uneasy, and out of control. memory loss coupled with mental confusion and lack of comprehension makes the experience all the more terrifying. additionally, the seizure experience interrupts one’s daily routine in many ways, both during and after the experience itself, further adding to the feelings of being out of control. for most first-time seizure patients, emts are the first line of medical [page 84] [qualitative research in medicine & healthcare 2017; 1:6219] article no nco mm er cia l u se on ly care. emts transport patients to the ed, administer oxygen, check vital signs, and check for injuries, so the emt response adds to the initial experience. i had come in with my friend that i was at her house, and we were getting ready to go to bed. it was around 11 o’clock and she said she turned around to turn off the lights, turned back around and i was in a seizure. mine happened as i was driving but luckily i sensed that i was not feeling right, so i got to the cvs pharmacy to get something to eat and some water and walked in there, walked back to the cooler got a water, walked up to the counter and i was feeling light headed. my vision was really kind of blurry, and i could not focus and see. i remember it took me a minute to focus. i tried to find a candy bar, because i do have low blood sugar, so i thought that might be the reason, what the light headedness was. i could not focus, and the last thing i remember is punching my pin code and that was it. then i woke up in the emergency room. i work uptown and at 5 o’clock i was coming home on stonewall st. right up the hill and i was talking to my daughter and she said, ‘mom, something is wrong with you’, and i was aware that i could not find the words to express, but i was kind of making a joke out of it, like ‘what are you talking about, don’t make fun of me’, but i knew honestly something was really wrong and that is the last thing i remember. i totaled my car. i hit a couple of light posts and another car. i was at the mall and i had my two-year-old with me and we were at gymboree and i just remember this overwhelming sense that i am not okay, i need to tell somebody, and i could not speak, and then i woke up and i was on the floor, and hit my head and my shoulder was hurting. this sweetest teenage manager in that store was just looking at me and saying, i just remember looking up and she just said, ‘it’s okay, you had a seizure, help is on the way,’ and i remember being concerned about my son and there were all these moms playing with him and he was fine. i had programmed ice into my phone, and so they had already called my husband and he was on his way, so they said, ‘your husband is on his way, the ambulance it’s on the way,’ and then i don’t remember a couple of hours. i just remember looking across the store and then i remember being at the front of the store…i wanted to know what happened…i wanted to know who called you? how did i…how did i end up here? i guess i took down some displays. and i was kind of fighting back. they put an iv in me and i knocked it out. i was just kind of going nuts. from talking to the ems or the fire fighters they said that they really had to pump a lot of anti-seizure stuff to get me to calm down because i was just kind of going nuts. my face was kind of bruised up and i had a black eye for a couple days, looked like i was in a fight. experience is unknown and uncertain while some participants have a family history of seizures and thus have some idea – at least after the fact – of what is happening, others have no prior knowledge of seizures. some family members recognize the experience as seizures at the time of onset, but some do not know what is going on at the time of seizure. regardless of prior knowledge, participants are quite unprepared for the experience. my child had petit mal seizures so i knew grand mal could come, [but] i was not prepared for it when it happened. i did not feel anything. i never felt anything when i had the seizure, but i have seen other people having a seizure and everything they went through. when i had the seizure, my husband was desperate. as previously stated, the experience is extremely frightening. a large part of the fear is based on not knowing what is happening. parents of children with seizures report being fearful that their child is dying, and the loss of control of oneself or one’s child is especially terrifying. when we [went into] into the emergency room it’s scary, [my son is] two years old, you don’t know what’s going on, that was very scary…and at that point he came out of it…it’s very traumatic. that is trauma…you think they died. you hear people talk about this, it is one of the most frightening moments of their life. my nine month old, i took her out of the car and her eyes rolled back…i went inside; i am freaking out, what do you think is wrong with her that her head started shaking, i started screaming, someone called 911, and they came. experience results in confusion and memory loss even more unsettling to the participants than not being able to remember what happened during the seizure itself is not being able to recall the information that is given during the ed stay. during the ed visit, participants undergo several tests in an attempt to decipher why they had the seizure. prior to discharge, the patients are informed of their results, with or without someone else present. patients are in no state of mind to understand this information at that time. for some, it is because of the overwhelming fear that they experience; for others, they are not able to understand simply because of the confused state of mind that lasts for hours to days after the seizure. often, participants are not able to recall information about how they arrived at the ed, what happened in the ed, or even what the results of the ed tests showed. further, patients are also unable to remember crucial details about follow up appointments or directions for prescription medications. after i got back to work, i forgot my results, so i had to see the doctor…i made an appointment. he [qualitative research in medicine & healthcare 2017; 1:6219] [page 85] article no nco mm er cia l u se on ly made me come and see him like in 10 days afterwards, and then i thought that it was the first i was meeting him. he said, ‘no, because we talked in the emergency room.’ i said, ‘i don’t remember’, because i was taking my pills wrong. i was taking them backwards and he said, ‘i told you this in the emergency room’ and i said, ‘sorry’. patients need reassurance in the ed once in the ed, patients undergo numerous diagnostic tests in an attempt to decipher why they experienced a seizure, including ct-scans or brain scans, eegs, mris, blood tests, and measurement of vital signs including blood pressure and temperature. most participants have vague memories of medical testing, but many cannot recite which tests were completed. well i was certain there was [testing in the ed]; when i had the mri i thought there was a brain tumor that is why, because they were all kinds of things going on, but it wasn’t. i did all the follow up stuff, a whole battery of cardiac stuff just to rule that out, so i got every test done known. they checked my blood…they were asking questions trying to induce, the strobe light thing you have to try to see if they could make one happen, and they are measuring your blood pressure and checking your pulse, you know the normal doctor stuff. most participants know that some testing was done in the ed but are not sure of what specific tests were completed. they just did a, i guess it was an mri, i don’t know if they do an mri or ct-scan – what’s the difference – just…to make sure no tumors were there. the time course of the emergency department visit typically lasts several hours. the longer length of stay is commonly a result of physicians allowing the patients to awaken from their postictal state (the period of time after a seizure in which the patient is in an altered state of consciousness and confusion) following the seizure, as well as for allotting time to complete the required testing in the ed. whether or not they have an eeg in the ed, participants are typically discharged from the ed that same day. this is the current standard disposition for an uncomplicated first time generalized seizure patient. patients who have abnormalities identified on imaging or laboratory studies while in the ed sometimes require an overnight admission for further evaluation and management of the underlying issue. this includes additional laboratory testing or, for some patients, further brain imaging. occasionally, a patient requires a second eeg to further elucidate what is happening with him/her. if admitted, the patient is typically seen in consultation by a neurologist. because seizures are not an infrequent experience to ed staff, and are not life-threatening conditions from a medical standpoint; but are terrifying and confusing to seizure patients and their families, there is a disconnect between the level of care and concern patients and family members need from the ed and the level of concern provided. given that the patients are in the ed for many hours, there is a need for increased reassurance and information management. i think i felt like there were lots of people in there. i never felt ignored, i never felt that people forgot about us, but i needed someone to say, i felt like [they acted as if] it was an everyday occurrence, and this was not an everyday occurrence in my life, and so i needed someone who would come in and say, we understand this is not an everyday occurrence so here is what we are going to do, you are going to follow up with your neurologist and your neurologist is going to give you, they are going to work with you on what other tests you need, and what medication you are going to need, and these are the steps, instead of just saying follow with your neurologist, just pitch it back in somebody else’s hands. some patients report being placed in a hallway bed for several hours without anyone offering to help them change out of their soiled clothing. some have traumatic injuries from the seizure and remember that no one helped to clean them up for a very long period of time. for some, the experience is so anxiety provoking, they require medication to calm down. in addition, some describe their experience as being treated nonchalantly by ed staff, in contrast to the perception of it being an extremely traumatic event for the seizure victims and their family members. one of the things that i’ve heard from lots and lots of people over the years…it is one of the most frightening moments of their life, yet the emergency room staff see one of these every hour. i went and had all the…they rush you down for the ct scan. you wake up and you have these little things on you [researcher note: electrodes]. you don’t know why you have these things on you, who is doing what, but it is like, what do i do with this. i am all bloody. can somebody clean me up? experience is overwhelming and anxiety-producing well after the seizure is over participants experience a wide array of emotions after their discharge from the ed. many recall being overwhelmed for several days after their first-time seizure and ed visit. after their seizure experience, patients take several days off of work and sleep for several hours a day to recover. the commonly reported emotion after the seizure experience is fear. regardless of what happens in the ed, participants report lingering fear due to not fully understanding what having a seizure disorder means. participants are afraid of the unknown and worried that they will have another seizure. some participants are afraid to fall asleep afterwards because they are afraid that they will not wake up. this was new for me. i never expected this of me and i was very depressed for a long time, very long [page 86] [qualitative research in medicine & healthcare 2017; 1:6219] article no nco mm er cia l u se on ly time. i was crying all the time. i spent my time thinking and crying and wondering what was going to become of me. why do i have to be medicated? but, thanks to a lot of people that i live with and especially my husband, his support and my friends’ support, i started to understand the situation. i am not the only one that is going through this and there are worse things that people have to go through, worse than mine. and, little by little, i started understanding that my illness is not that bad. that, if i take care of myself, i am going to be okay. patients’ baseline anxiety exists for a long time after the experience. patients are fearful of experiencing more seizure activity and have thoughts about when and where another episode could occur. some suffer from anxiety about bad outcomes if another seizure occurs. for many, a major restructuring of their confidence, self-esteem, and independence results from the seizure experience. and you never know when it’s going to happen again, and she is supposed to go on the eighth-grade swimming trip and i am saying, ‘no you can’t get in the ocean’. there is no way you know, and you do all this controlling stuff and you try to keep them from doing things and they wind up doing it anyway. before i felt confident, strong. now i depend on the medicine to be well. if i do not take the medicine, i will have seizures again. and i am scared. that scares me because i have always been a very independent person all my life since i was very little, and i have to depend on people. i cannot be like that. that has also affected my personality because before i was always looking ahead. now i just stay there, i don’t do what i used to. i was saying to that doctor, something is wrong with me. my husband was saying something was wrong with me. everyone who works with me says, she just has this blank stare all the time, so i was relieved by knowing [that it was seizures], but it was like, what’s going to happen next and how long could i go without. to add to the levels of anxiety, their fears are not entirely unwarranted. some patients do have recurring seizures. she did have another seizure. they have said 50% chance she would have another one and she had one a week later in the shower. patients want their lives to go back to normal as soon as possible after the seizure, and in an effort to reach normalcy, some try to stop thinking about the unknown and make efforts to manage the anxiety surrounding their diagnosis. yet, most patients have to make significant changes to adapt to their seizure disorder, and participants note there are some unavoidable changes. all patients face undesirable lifestyle changes. for instance, participants are required to stop driving for at least six months following their seizure. i lost my license promptly so that’s that, but i said to my doctor, i cannot even think about driving again. i mean it really scares me a lot, but i am almost on my six-month anniversary and i will be clear to go. 24 weeks counting until i can drive again. i could not drive for 6 months so that really frustrated me practically because i wanted to drive when i wanted, where i wanted, and i became dependent on my husband practically all the time and i occupied his time that he needs for himself. in addition to curtailing driving, patients also have to stop drinking alcohol post-seizure and some have to stop working. some are instructed to avoid triggers such as caffeine and strenuous activities and exercising. some patients curtail activities such as long car trips and vacations, and some refuse to go out alone. participants report being treated differently by their family and friends following their seizure. in particular, family and friends are fearful of the seizures recurring. some patients feel embarrassed and stigmatized by others. understandably, participants report feelings of dependence on others and some patients feel so stigmatized they are reluctant to be around other people. experience has negative financial ramifications for some patients study participants included both insured and uninsured patients. for participants with health insurance, the majority of follow up and cost of medication is covered. for patients enrolled in the research trial portion of the related project, follow up care and medication cost were covered on a sliding scale basis. for participants who are not enrolled in the trial and who do not have health insurance, cost of follow up and medication is paid out-of-pocket. for patients not on health insurance, sometimes emts are the only line of emergency medical care; some uninsured participants report having declined ambulance transportation to the hospital because of the cost. in addition, some participants, particularly those without insurance, are unable to fill the prescriptions due to cost. medical testing, treatment, and discharge is confusing and uninformative some participants have eegs conducted in the ed, and some do not. regardless of what tests are conducted, much of the testing conducted in the ed does not indicate what is wrong with the patients, or comes back normal. this is not always the reassurance one might suppose it would be, because the patients are desperate for answers as to what has happened to them, and want indications that the ed staff takes their traumatic experience as seriously as they do. while sometimes the test results indicate abnormal brain activity or a possible diagnosis, and other results rule out other medical conditions such as a brain tumor, some test results from the ed are inconclusive. participants describe being nervous leaving the ed without firm knowledge of what is wrong and what can be done. [qualitative research in medicine & healthcare 2017; 1:6219] [page 87] article no nco mm er cia l u se on ly most patients are not discharged with medication/prescriptions initiation of antiepileptic medication by an ed physician is not currently standard of care for the majority of first-time seizure patients, and patients are not typically started on medication prior to departure from the ed. if a patient has epilepsy, the longer time to initiation of antiepileptic medication can be dangerous and the patient is likely to experience a second seizure prior to outpatient follow up. as expected, this recurrence is frightening for patients and families and leads to a high degree of uncertainty. you kind of go home with no medication from the er…i am thinking, i am a mom, i am a working mom…what’s next? medications prescribed in the ed for patients who are prescribed medication in the ed, many take it as prescribed until the arranged follow up with a neurologist. however, other patients refuse the medication even though the epileptologist recommends it because of worry about potential side effects, fear that the ed is not the appropriate setting to start a new long-term medication, a lack of one-on-one interaction with a neurologist in the ed, and a disbelief that the medication will fix the underlying issue. discharge from ed to home as we have stated, the majority of patients, whether or not they have an eeg, are discharged from the ed if the work-up is unremarkable. as part of the discharge process, patients are sent home with basic instructions for follow-up care and instructions on the conditions under which they should return emergently to the ed. patient experience varies with regards to the discharge process. some ed staff makes a clear effort to elucidate the discharge plan and provide instructions that patients perceive as clear and informative. sometimes instructions are given to the patient him/herself, other times to a family member because of the patient confusion. both patients and families can leave the ed with a clear explanation and clear course of action for discharge. however, for some patients and/or families, the discharge plan is confusing and perceived to be uninformative. some participants leave the ed without an understandable explanation of what happened to them both during the seizure itself, and with regards to the ed stay. there is not even a discharge paper that says seizure. what does that mean? you know, what is a seizure? you know, just what does this mean? because i did not know, you know? you hear the word seizure. you hear the word epilepsy, but nobody knows what that is. everyone in the emergency room was very nice but i also remember feeling like, they are monitoring her to see to make she is okay, but then i leave not necessarily feeling any better because i do not have answers. so then it was like, i guess i won’t go to the emergency room anymore. because you go home with lots of questions and then lord have mercy you start googling and then it is all over. referrals from ed are standard of care but anxiety inducing follow up appointments are a long wait when eegs and other tests are conducted in the ed, participants are aware that the results are read by a doctor generally, or a neurologist or specialist specifically. for all participants who have an eeg in the ed, the test results lead to a follow-up appointment with a neurologist. moderator: did you have an eeg while you were here? participant: yes, i did, and i guess they noticed something little, in the left side of my brain, but i have not had the mri yet to figure out if they can find the cause. i had every test in the world done, and they all said i was fine, i knew that i was not okay. even for those with a relatively short period of time before their follow-up appointments, the idea of having to wait any period of time for more information evokes similar feelings of uncertainty and fear. it is a long wait. when you can’t get in somewhere right when you are waiting. participants understand that the purpose of a followup appointment is to further test for the cause of their seizure, and a follow-up with a neurologist seems like the natural next step for their condition after leaving the emergency department. continued long-term follow up care after a first-time seizure does make participants feel comforted and reassured by having a physician tracking their medical issues on a regular basis. for those who are on medications, these treatments make their illnesses more manageable and are reassuring to patients. [the treatments] offer me peace of mind because i am not going through the scare that i will have another one. patients who had an eeg performed in the ed as part of the ongoing research project mentioned earlier includes adults who presented after an uncomplicated first time generalized seizure. enrolled patients undergo a ct scan and a basic laboratory work-up in the ed. if this work-up is unremarkable, patients then have an eeg performed in the ed. the eeg is then immediately read by the on-call epileptologist (neurologist specializing in the treatment of epilepsy). based upon the eeg findings, the epileptologist determines whether or not the patient has epilepsy warranting immediate initiation of antiepileptic drug therapy. if so, the patient is started on medication prior to discharge from the ed. all participants are discharged from the ed after the first-time seizure. these individuals also [page 88] [qualitative research in medicine & healthcare 2017; 1:6219] article no nco mm er cia l u se on ly have a follow up appointment made for them before they are discharged from the emergency department and –as a result of being enrolled in that study – are guaranteed follow up in at least 2-3 weeks whether or not they have insurance. this follow up makes patients feel reassured and cared for. they know that although they had been through a traumatic experience, they are going to be followed upon on an outpatient basis. the main discharge care was following up with the appointment with the neurologist. the thing i would i remember is that he made a really strong attempt to get me in to see a neurologist quick. he could’ve just said, ‘oh, go home and rest, you did not have enough sleep,’ but that really was the most important thing, he did not try to diagnose as much as he said, ‘okay, i understand this is a neurological issue you need to get to see a neurologist.’ so i saw him 2 days later and i don’t remember if they read the eeg that night and said any kind of on it anyway but i knew i would be right in to see him. i think it was a month after i had the seizure. they ordered the exam and it was between two and three weeks. they found out that i have something wrong with the left side of my brain and that if it was going to get worse, something like that, and if the seizure were going to present more often then they would have to do surgery, but thank god for now i continue with the medicine. after that seizure i had in july, i had another one in december 2013, at that time i did not go to the emergency room, i went to the doctor. in comparison, the majority of patients do not have an eeg in the ed and have to arrange outpatient follow-up on their own. this uncertainty makes those patients feel uneasy and anxious. to most, the main concern is the time between being discharged from the emergency department and the time to follow up with a neurologist. often, this is weeks to months without an explanation for their ed presentation and without antiepileptic medications if the patient needs them. horrible. we had to wait for weeks as well. actually, i don’t think we were referred from the hospital. i remember going to my pediatrician and having a discussion of who i wanted, because i work with special needs kids and i knew neurologists. i was like, i want her and he was for it. i think that is where our referral came from, but also that in the interim time is when he was put on depakote over the phone from the neurologist on call. some participants are also still struggling with medications months after the seizure experience. some have issues with medication side effects requiring multiple medication changes while some are frustrated with the uncertainty of how long they will remain on medication, or if they will ever be able to be taken off. the levetiracetam is what they gave me in emergency room and the doctor changed the medicine to another that did not depress me. this was the reaction from my body to the medicine. they gave me something i don’t remember what it was, i know the first drug i was prescribed by dr. _____ was dilantin, and that made my gums swell very much. so then they stopped dilantin and they went to one other one. i can’t remember the name of that one. now i am on carbamazepine. patients expect standard of care to be performed in ed at the end of the focus groups, participants were asked a series of hypothetical questions in an attempt to better understand their reactions to potential diagnosis and treatment options in the ed. participants who received an eeg in the ed were asked how they would feel if no testing was done in the ed, and these participants believe that testing, including vital signs, blood work, head imaging, and eegs, must be part of the standard of care for firsttime seizure patients. a lack of testing would have been unsettling and anxiety provoking and would have resulted in a lack of trust in the ed had no testing been completed following a first-time seizure. participants who were not prescribed medication in the ed were asked what they would have thought of receiving a prescription for antiepileptic mediation in the ed prior to discharge. these participants responded that because of the trauma of the seizure itself and the overwhelming confusion that existed in the ed, they would have been afraid and would have been unable to understand the medication instructions. these patients believe that the ed visit does not offer ample time for discussion of the medication and this would be more suited for an outpatient visit with a specialist who has the time to get a detailed history and who has the ability to adequately describe the medications to the patients. in addition, these participants would have wanted time to process what had happened to them before starting a medication. this response differs from that of participants who did receive medication prior to ed discharge who were reassured by being started on the medication in the ed. interestingly, regardless of the testing performed or medication proscribed in the ed, all participants think their course of diagnostic testing and treatment was the most appropriate course of action. in addition, all participants – regardless of their testing or medication status – strongly feel that, post-ed visit, rapid follow up with a specialist within two weeks is essential. if the wait for a specialist will be longer than that (and it was a months-long wait for some participants), even those participants who were reluctant to begin medication from an ed visit alone, prefer that to being sent home with a long wait for diagnosis and treatment. even hesitant participants are more open to diagnosis and treatment in the ed if they are assured that it would be done in consultation with a specialist. [qualitative research in medicine & healthcare 2017; 1:6219] [page 89] article no nco mm er cia l u se on ly in addition, the expectation for treatment in the ed is that that patients would receive rapid testing in the ed, including blood work, ct scan or mri and an eeg. some participants think that a neurologist should see a first-time seizure patient prior to discharge from the ed. medication should be initiated promptly where it is indicated. well i think they got her in right away. what i remember, someone was talking to us all the time. i think is really important that people are seen quickly. anyone having seizures needs to be treated soon, they not need wait around for weeks or a year having seizures. at first it’s more important to get diagnosed properly, then to get on medications. regardless of their experience in the ed, most patients perceive the ed physicians, nurses, and staff to be caring, compassionate and gentle and perceive that a genuine effort was put forth to help the patient feel reassured and taken care of. the patients who do not speak english recall a clear effort to obtain an interpreter so that the patient and the family understood what was happening. at the end of the focus groups and phone interviews, participants were asked their perceptions of standard of care for first-time seizure patients. the majority of participants were unsure of how to answer. most patients trust that medical professionals will act in their best interest and give them the standard of care, whatever that is. i trust in them. i trust in the doctor. i only listened to what they said that happened to me and i followed the recommendation of the specialist. outpatient follow-up after ed discharge, first-time seizure patients typically require follow up with a neurologist. the outpatient follow-up allows for continued management of the patient’s medications as well as a venue for arranging further testing if needed. for participants, neurology follow-up was typically very detailed and covered a much more detailed medical history than in the ed. this appointment was where the neurologist reviewed the work-up that had already been completed in the ed. when i got the eeg in the er, they had a group of nurses and i think a couple of doctors, going ahead and looking at what was done. they said that it looked normal to them. afterwards we went to dr. [epileptologist] and that’s when he told us that there was [an abnormality], that if you weren’t looking for it, you would not see it, but he saw it. it was one of the top lines. i don’t remember which part of the brain that is and then he said it was on the left. in addition, during follow up, additional ct scans, mris, eegs, blood work, and other testing were completed. similar to the ed visit, participants brought family and/or friends to the outpatient visit. the general theme is that the outpatient neurology visit was where participants felt most understood and reassured, and where they were better able to listen to and understand their diagnostic and medication information, compared to the ed visit. although the patients diagnosed with epilepsy in the ed had received their diagnostic information prior to discharge from the ed, for most of them, it was not until the neurology follow up visit where they felt they had received the official diagnosis. a few participants some still had hesitancy toward their healthcare providers even after the outpatient follow up; they were nervous about trusting the physician and any recommendations that were made, and were frustrated and did not feel as though they were receiving adequate explanation of what had happened to them. i just remember thinking, i don’t feel good about this. a, i don’t know you, b, you don’t know my child. i mean we had already been in the hospital twice and he had this bit of information on a computer somewhere and who knows if he was looking at it. so we were on depakote and he came off if for twenty-four hours because it was such a bad call. it was so horrible for him and i don’t remember how we got through this first two weeks because it was terrifying. it was absolutely terrifying. discussion first time seizure patients in the ed experience cognitive difficulties, fear, stigma and embarrassment, and uncertainty. regardless of what diagnostic testing or medication prescriptions patients are given in the ed, patients trust medical professionals to act in their best interest during this time. patients are generally satisfied with the care received in the ed, whether or not they had an eeg and early diagnosis and treatment, because they trust the healthcare providers to provide them with the current standard of care. those who receive this testing in the ed, however, report alleviation of anxiety and reduced risk of future seizures or complications. all patients have expectations of rapid testing, diagnosis, and treatment. performing medical tests, such as an eeg, in the ed can offer patients an explanation for their seizures and offer peace of mind for patients and families. an examination of patient experiences and patient-centered outcomes for first time seizure patients in the emergency department shows a divergence between clinical and therapeutic expectations and patient and family expectations. in fact, while clinical considerations for conducting an eeg in the ed for first time seizure patients are ambivalent, patient outcomes considerations for testing in the ed seem to be much clearer. focus group members state that ed eeg performance may result in quicker initiation of anticonvulsant treatment, aids patients in expediting close follow up with an outpatient neurologist, decreases patient risk for further seizures, and reduces the number of patients who are lost to follow up. additionally, those who received eeg testing report alleviation of anxiety and perceived reduced risk of future seizures or complications. [page 90] [qualitative research in medicine & healthcare 2017; 1:6219] article no nco mm er cia l u se on ly however, there is some ambivalence expressed for ed eeg testing. it appears that clinical indications in favor of eeg testing –earlier and more definitive diagnosis, earlier treatment of potential epilepsy and resulting higher treatment efficacy, lessened chance of subsequent seizure episodes – are fairly evenly balanced with clinical reasons for not conducting eeg testing in the ed – lower treatment compliance because of reduced patient mental capacity and compromised memory, lack of opportunity for lengthy discussion between patient and physician, and the moderate rate of positive epilepsy diagnosis among first time seizure patients, and our focus group findings bear this out. however, when patient and family experience is taken into account, the argument for eeg testing is much stronger. patient and family fear and uncertainty are alleviated through earlier testing and diagnosis and earlier presentation of health information. the desire on the part of the patients and their family members for rapid diagnosis, explanation, and treatment leads to a bias towards desiring eeg testing in the ed, especially because it is felt to expedite outpatient follow-up. nonetheless, coupled with the earlier testing is a strong need for detailed (oral and written) health information to be provided to patients and families in the ed, and for rapid (within two weeks) follow up with a specialist who can review diagnosis and treatment options with the patient and family. also of particular consideration is that, regardless of what recommendation the ed staff makes – to conduct eeg testing in the ed or not – patients will be satisfied with the recommendation because of a positive ramification of physician hegemony – the belief that if the physician recommends a course of treatment, it must be the standard of care and can be trusted to be the best option for the situation. despite the patient-centered outcomes mandate of the aca, shared decision making can only occur in a climate of two-way information and knowledge sharing. the cognitive impairments association with seizures makes that requirement difficult if not impossible to achieve in the ed at or close to the time of onset. yet, ed providers’ knowledge and understanding of the fear; confusion; and desire for rapid diagnosis, explanation, and treatment on the part of the patient leads to a bias towards recommending the earlier testing, diagnosis, and treatment associated with eeg testing in the ed. coupled with the earlier testing, however, is a strong need for detailed (oral and written) health information to be provided to patients and families in the ed and for rapid (within two weeks) follow up with a specialist who can review diagnosis and treatment options with the patient and family. conclusions in this paper, we suggest that obtaining and interpreting an eeg in the ed could expedite patient work-up, treatment, and disposition. in addition, as we suggest in this paper, earlier diagnosis and treatment could possibly ease anxiety and improve patients’ experience. in summary, adult seizure patients have difficulty remembering and understanding the events surrounding their ed visit due to their medical state at that time. patients and their family members trust medical professionals to act in their best interest during this time, and trust that health care providers will perform the standard of care for evaluating first time seizures. while patients acknowledge reasons for not performing ed eegs, overall they express partiality for performing eegs in the ed, because they can result in quicker initiation of testing and anticonvulsant treatment, aid patients in expediting close follow up with a neurologist, may decrease risk for further seizures, and reduce the number of patients who are lost to follow up. performing eegs in the ed and initiating appropriate anticonvulsant therapy for those patients who are at high risk for future seizures expedites appropriate follow up care, decreases risk to patients and society, and offers patients a sense of security and control over their medical condition. in addition, performing medical tests such as an eeg in the ed can offer patients an explanation for their medical state and offer peace of mind for the patient and his/her family. references 1. biraben a, taussig d, thomas p, et al. fear as the main feature of epileptic seizures. j neurol neurosurg psychiatry 2001;70:186-91. 2. ryan s, räisänen u. the brain is such a delicate thing: an exploration of fear and seizures among young people with epilepsy. chronic illn 2012;8:214-24. 3. weinstein s. seizures and teens: the impact of seizures and epilepsy on families. exceptional parent 2007;37:61-5. 4. acep clinical policies committee, clinical policies subcommittee on seizures. clinical policy: critical issues in the evaluation and management of adult patients presenting to the emergency department with seizures. ann emerg med 2004;43:605-25. 5. krumholz a, wiebe s, gronseth gs, et al. evidence-based guideline: management of an unprovoked first seizure in adults: report of the guideline development subcommittee of the american academy of neurology and the american epilepsy society. neurology 2015;84:1705-13. 6. huff js, melnick er, tomaszewski ca, et al. clinical policy: critical issues in the evaluation and management of adult patients presenting to the emergency department with seizures. ann emerg med 2014;63:437-47. 7. hauser wa, shinnar s, berg at et al. seizure recurrence after a first unprovoked seizure: an extended follow-up. neurology 1990;40:1163-70. 8. eisner r, turnbull t, howes d, gold i. efficacy of a standard seizure workup in the ed. ann emerg med 1986; 15:33-9. 9. king m, newton m, jackson g, et al. epileptology of the first-time seizure presentation: a clinical, electroencephalographic, and magnetic resonance imaging study of 300 consecutive patients. lancet 1998;352:1007-11. [qualitative research in medicine & healthcare 2017; 1:6219] [page 91] article no nco mm er cia l u se on ly 10. wyman a, mayes b, hernandez-nin j, et al. the first time seizure (fits) ed eeg study. acad emerg med 2015;22:s138. 11. zehtabchi s, baki sga, omurtag a, et al. effect of microelectroencephalogram on clinical management and outcomes of emergency department patients with altered mental status: a randomized controlled trial. acad emerg med 2014;21:283-91. 12. praline j, grujic j, corcia p, et al. emergent eeg in clinical practice. clin neurophysiol 2007;118:2149-55. 13. sadleir l, ingrid s. optimizing electroencephalographic studies for epilepsy diagnosis in children with new-onset seizures. archiv neurol 2010;67:1345-9. 14. kadambi p, hart kw, adeoye om, et al. electroencephalography findings in patients presenting to the ed for the evaluation of seizures. am j emerg med 2015;33:100-3. 15. ziai wc, schlattman d, llinas r, et al. emergent eeg in the emergency department in patients with altered mental states. clin neurophysiol 2012;123:910-7. 16. vranceanu a, cooper c, ring d. integrating patient values into evidence-based practice: effective communication for shared decision-making. hand clin 2009;25:83-96. 17. barratt a, evidence based medicine and shared decision making: the challenge of getting both evidence and preferences into health care. patient educ couns 2008;73:407-12. 18. becker er, hockenberry jm, bae j, et al. factors in patients’ experience of hospital care: evidence from california, 2009-2011. patient exp j, 2014:95-110. 19. burns j. what works best for patients? pcori hopes to provide answers. managed care mag online 2012. available from: http://www.managedcaremag.com. 20. newhouse r, barksdale dj, miller ja. the patient-centered outcomes research institute: research done differently. nursing res 2015;6:72-7. 21. sequist td, taveras em. clinic-community linkages for high-value care. n engl j med 2014;371:2148-50. 22. lee eo, emanuel ej. shared decision making to improve care and reduce costs. n engl j med 2013;368:6-8. 23. brodt a, norton ck, kratchman a. so much more than a ‘pair of brown shoes’: triumphs of patient and other stakeholder engagement in patient-centered outcomes research. patient exp j 2015;2:43-9. 24. asbury j, overview of focus group research. qual health res 1995;5:414-20. 25. carey ma. the group effect in focus groups: planning, implementing, and interpreting focus group research. in: morse jm, ed. critical issues in qualitative research methods. thousand oaks, ca: sage; 1994. pp 234-41. 26. davis cs. focus groups: applying communication theory through design, facilitation and analysis. new york, ny: routledge; 2017. 27. krueger ra. moderating focus groups. thousand oaks, ca: sage; 1998. 28. charmaz k. grounded theory: objectivist and constructivist methods. in: denzin nk, lincoln ys, eds. handbook of qualitative research. thousand oaks, ca: sage; 2000. pp 509-35. 29. davis cs, lachlan k. straight talk about communication research methods. 3rd ed. dubuque, ia: kendall-hunt. 2017. [page 92] [qualitative research in medicine & healthcare 2017; 1:6219] article no nco mm er cia l u se on ly layout 1 welcome to issue 3, volume 6 of qualitative research in medicine in healthcare. the term “qualitative research” covers a wide range of theories and methodologies, and this issue certainly illustrates that diversity of approaches. as with most articles published in qrmh, authors featured in this issue worked through multiple manuscript iterations prior to acceptance for publication. many other submitted manuscripts, of course, never make it that far. no doubt the story is the same for any reputable research journal. now that i am well into my second year of editing qrmh, i have developed a fairly consistent set of suggestions for authors in the hope of moving manuscripts toward publication. not every suggestion is suitable for every manuscript, so i tailor my comments to authors accordingly. in this brief editorial, i offer my suggestions based upon dozens of manuscripts that i have read and replied to, plus many more comments that i have read from highly encouraging and supportive colleagues who i am fortunate to have reviewing for this journal. first, for authors who are new or fairly new to qualitative research, i suggest finding an exemplary article to use as a model. reading excellent qualitative research will help you to appreciate good writing style. the best qualitative research has a particular tone to it and an engaging rhythm that sets it apart from its quantitative counterparts. qualitative research projects a kind of warmth. more than a warmth, in fact. it’s a burning desire to say something that is worth saying—a message that can enrich a reader’s point of view and maybe even change their life. to put it bluntly, effective qualitative scholarship tells a good story. stories require settings and characters. qualitative research should have both. give your readers a sense of being in the research setting through vivid, sensory description. drop your readers right into the scene through a liberal dose of thick description. appeal to the readers’ senses by not just describing what the context looks like, but also the sounds and maybe even the smells of the place. context also includes other factors worthy of description including the history of the institution, city, or region where the research takes place: what defines that place? how did it become that place, and how does that condition your research? even more important, present research participants to your readers as fully developed human beings. give your readers a sense of what is going on in the minds of your participants by, when appropriate, describing their fears, dreams, and hopes. let them speak in their own ways by using extended quotations, but then, follow through by explaining why those quotes are important, that is, how the quotations illustrate or emphasize the point you are making. in other words, quote heavily from interview transcripts and/or primary source texts, but don’t leave the quotes hanging. follow through with explanation. a theory used to guide your research either as a starting place, as a means of making sense of your data, or both is not essential; however, in many manuscripts that i have read, a guiding theory would help more than i can say. on the other hand, it is just as important not to become a servant to a theory so that what we look for and the conclusions that we reach are determined before we even begin. theories help us find our ways along dark, winding paths, but they shouldn’t determine our course. and don’t be afraid of data that doesn’t fit your theory; instead, embrace that data and follow it through. theories are nothing more than ideas to help us along the way. rather than limit us, they should take us as far as they can. the most exciting part about qualitative editorial tips on publishing qualitative research in medicine & healthcare warren bareiss, phd department of fine arts & communication studies, university of south carolina upstate, spartanburg, south carolina, usa correspondence: warren bareiss, department of fine arts & communication studies, university of south carolina upstate, spartanburg, south carolina, usa. e-mail: bareiss@uscupstate.edu key words: qualitative research; quotations; methodology. received for publication: 31 december 2022. accepted for publication: 31 december 2022. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2022 licensee pagepress, italy qualitative research in medicine & healthcare 2022; 6:11170 doi:10.4081/qrmh.2022.11170 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. [page 86] [qualitative research in medicine & healthcare 2022; 6:11170] qualitative research in medicine & healthcare 2022; volume 6:11170 no nco mm er cia l u se on ly research for me is finding the end of the path and then pushing forward. qualitative research should be an adventure. this is the comment that i most often read from reviewers: describe your methodology in detail. explain how you collected your data, what you did with your data, and the reasons for your decisions. clearly walk your readers through every step of the process. here is a good rule of thumb: once they read your article, your readers should know what to do if they want to replicate, at least in principle, your study by adapting your approach to wherever they are, using what resources they have. speaking of methodology, be sure to use the correct terminology when describing your methodological approach, and don’t promise more than you deliver. reference to “phenomenology” is a case in point. “phenomenology” is a word that authors often like to say they are doing, but too often, their application of the term is at best superficial. that is a sure way to alienate a reviewer who enjoys a good phenomenological read. “phenomenology” has a wide range of applications; however, in my experience, phenomenology in qualitative health research is fundamentally about understanding participants’ experiences as conditioned by their worldviews. anyone who wants to do a phenomenological study needs to first read “deep play: notes on a balinese cockfight” by clifford geertz (1973). if you haven’t read that at least once, you shouldn’t be writing phenomenology. besides, it’s a joy to read. (see my comments about telling a good story and using thick description above.) even if you don’t take a phenomenological perspective, read geertz’s essay anyway. geertz clearly demonstrates what interpretation in qualitative research is all about. qualitative research is a kind of double turn. first, explain what is going on in the minds of the people who have been kind enough to let you into their worlds. this is when you let them speak through extended quotation. then, apply your analytic skills (often informed by theory) to identify emergent patterns amidst participants’ discourse and explain what those patterns mean to you as a health researcher. to be completely thorough, i would add that a triple turn would be to explain your perspective back to the participants to see if it resonates with them. they don’t have to agree with everything you say, but they should at least be able to appreciate your perspective. some of the most satisfying moments in my career have been when participants told me that, yes, i really got it; i really understood. each of the articles in this issue illustrates solid qualitative research. when i need an example of phenomenological research for prospective authors, i will point them to hans zingmark’s and anetth granberg-axèll’s article on neardeath experiences (ndes). zingmark and granberg-axèll clearly explicate their method of speaking with patients about intensely personal, life-changing experiences. first, they listen deeply to patients with open minds, setting aside potentially prejudicial filters constructed across years of medical training. instead, they provide long quotes from patient transcripts, looking for patterns in patients’ interpretations of their experiences. once patterns are found, zingmark and granberg-axèll re-interpret those patterns using a theoretical model and then build upon both sets of interpretations (i.e., patients’ interpretations and their own) in proffering advice to other healthcare providers when communicating with patients who have had ndes. monika shehi herr provides this journal’s inaugural book review—a feature that i hope will continue with a range of scholars presenting in-depth reviews of new books using qualitative methods to explore healthcare issue. shehi reviews becoming disabled: forging a disability view of the world by jan doolittle wilson, an autoethnography demonstrating the ideological and, ultimately, political nature of disability. reading herr’s review, it is clear that wilson has a story to tell—a story intended to change readers’ perspectives about how disability is constructed through discourse and policies, on one hand, and how it is lived as a day-to-day reality, on the other. as with the best of book reviews, herr’s review works as a stand-alone piece so that readers will learn much about the social construction of disability just by reading the review (although they certainly might be inspired to follow through by reading wilson’s book). indeed, herr even adds her own accounts into the review, both echoing and developing themes expressed by wilson. another first for me as qrmh editor is a mixed-methods approach provided by mellanie springer and her cowriters investigating effective messaging for a stroke intervention initiative. this article demonstrates that research need not be an either/or approach when it comes to quantitative and qualitative methods, but rather, both approaches can be mutually supportive. as the authors point out, quantitative health research often begins with a qualitative phase that is under-described in the final report (if acknowledged at all). springer et al. provide the very type of detailed explanation of methodology requested by many qrmh reviewers. using a theoretically informed approach, the authors begin with explication of theoretical construct building, describe their interview procedure and interpretation of patients’ perceptions and comprehension of intervention materials, and finish with a grounded understanding of how to most effectively frame intervention print and video messages for their intended audience. among our many emails back and forth from early drafts to polished proof, author hans zingmark told me that he hopes that readers will find his and his co-author’s article to be “useful.” utility is arguably the most vital aspect of any type of research—qualitative, quantitative, or mixed. i extend dr. zingmark’s wishes to all readers regarding each of the items presented in this issue of qrmh. references geertz c. notes on the balinese cockfight (1973). in c. geertz (ed.), the interpretation of cultures (pp. 412-453). basic books. [qualitative research in medicine & healthcare 2022; 6:11170] [page 87] editorial no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2018; 2:7178] [page 1] introduction across diverse disciplines and empirical contexts globally, collaborative research practices abound. in collaborative research, social actors in the fields under study are invited to participate as co-researchers together with university researchers in the co-production of knowledge across multiple, academic and non-academic knowledges. of course, collaborative knowledge production has a long history in the tradition of action research with its ideals of democratising relations between researchers and researched and transforming practices through processes of mutual learning.1 the current wave of collaborative research extends beyond the bounds of action research to cover not only action research but also a multiplicity of other heterogeneous research practices in relation to a myriad of different fields including social and health care.2-6 edwards and brannelly (2017) suggest that these heterogeneous research practices are based on linked but distinct methodologies that include, but are not restricted to, inclusive methodologies, co-production methodologies, decolonising/ indigenous methodologies and feminist ethics of care methodologies. the burgeoning of collaborative research can be understood as part of the so-called dialogic turn, a societal tendency in which collaborative practices have proliferated across diverse social fields as a means of generating new knowledge with a view to practice change.7-9 according to dialogic ideals, expert knowledge is democratized in the dialogic turn as the authorized knowledge of mainstream research loses its monopoly on truth, multiple ways of knowing (including experiential, embodied knowledges) are recognised as legitimate knowledge forms, and multiple actors are acknowledged as kinds of expert (including experience-based experts).9,10 in addition to various types of collaborative research, other practices in the dialogic turn include the co-production of health and social care, inquirybased learning in education, public engagement with science and the environment, collaborative therapy, and bottom-up organisational change..dialogue and collaboration have become buzzwords with a taken-for-granted positive value. the assumption is that, by harnessing difference de-romanticising dialogue in collaborative health care research: a critical, reflexive approach to tensions in an action research project’s initial phase louise phillips,1 birgitte ravn olesen,1 michael scheffmann-petersen,1 helle merete nordentoft2 1department of communication and arts, roskilde university; 2department of education, aarhus university, denmark abstract in the current socio-political conjuncture, collaborative, dialogic forms of knowledge production abound and are idealised as democratic and inclusive. the aim of the article is to contribute to the body of critical, reflexive analyses of collaborative research by analysing how complex dynamics of exclusion as well as inclusion create tensions in researchers’ attempts to establish collaborative relations in the initial phase of an action research project. the analysis applies a framework combining bakhtinian dialogic communication theory and foucauldian theory to explore inclusion and exclusion in the tensional interplay of multiple voices whereby certain voices dominate. finally, the article offers a typology of ideal types of collaborative research relations that can be used in the initial research phase as a platform for reflexive discussion between researchers and potential collaborative partners about their respective understandings of collaboration and dialogue and corresponding expectations about the research process and results. correspondence: louise phillips, department of communication and arts, roskilde university, denmark universitetsvej 1, roskilde, denmark. tel.: 4076.3799. e-mail: louisep@ruc.dk key words: bakhtinian dialogic communication theory; collaborative research; democratic methodologies; dialogue; initial phase of action research. contributions: the order in which the authors appear in the byline reflects their relative contributions to the article. conflict of interest: the authors declare no potential conflict of interest. funding: none. received for publication: 7 november 2017. revision received: 12 february 2018. accepted for publication: 24 february 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright l. phillips et al., 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:1-13 doi:10.4081/qrmh.2018.7178 qualitative research in medicine & healthcare 2018; volume 2:1-13 no nco mm er cia l u se on ly as a transformative force, dialogue can generate new knowledge across differences, including differences of organizational position and professional background, theoretical perspective, age, gender, ethnicity and social class.11-13 participants, it is claimed, are empowered as co-learners, coresearchers or dialogue partners as opposed to clients, patients, informants, target groups or consumers. exponents assert that, as long as dialogic principles and methods are followed, then dialogue and collaboration will fulfill the promise of democratic, participatory processes.14-16 beyond the buzzwords the current socio-political conjuncture appears, at first glance to be highly supportive of, and conducive to, collaborative research based on inclusive, democratic, dialogic principles. in this article, we go beyond the buzzwords by challenging this idealised picture on two counts. first, we assert that research conditions in the current conjuncture hinder and circumscribe – as well as enable and nurture – collaborative forms of research. second, we aim to de-romanticize dialogue and argue that collaborative research encompasses not only inclusion but also exclusion arising from the intrinsic complexities of dialogue. in the article, we explore how collaborative research, including collaborative health care research, is riddled with tensions stemming from dynamics of exclusion and inclusion in complex processes of dialogue. we do this through critical, reflexive analysis of the initial phase of a collaborative study of health care in which the four of us co-authors made up a team of university researchers. a key analytical point is that one of the main voices in the initial phase romanticizes dialogue as an inclusive, straightforward process, rendering it difficult for participants to detect dynamics of exclusion. the aim of the collaborative research project with respect to practice was to generate knowledge and practice innovations that would strengthen collaboration between primary and secondary health care sectors and across professions in person-centered rehabilitation for older people with cognitive impairment so that a greater number of older people with cognitive impairment and their relatives experience smooth and coherent processes of rehabilitation in which they feel empowered as dialogue partners and agents in collaborative decision-making. the aim with respect to research was to contribute to the research field on crosssectoral and inter-professional collaboration in personcentered social and health care (including care for older people) and to the broader research field on the dialogic turn. the collaborative research design was based on the participation of older people with cognitive impairment, their relatives and social and health care practitioners as co-researchers in the co-creation of knowledge and practice innovations in a series of workshops. the initial phase consisted of the following elements: a response to a call for applications by a funding body; attempts over a sixweek period to establish relations with actors in the field – including the consultant doctor in a geriatric ward and three teams of dementia specialists – with a view to recruiting them as co-researchers; the formulation of a project description; the writing and submission of an application to the funding body; and the consideration of the submitted application by the funding body. tensions stemming from dynamics of inclusion and exclusion in the making of the project were its unmaking as they led to the breakdown of relations with potential co-researchers. key co-researchers dropped out the day before the deadline for the application, leaving the project bereft of the mutual commitment to collaboration between actors in the field of practice and the university research team that the call for applications, and our own dialogic research principles, stipulated. the rejection email from the funding body came as no surprise. as an analytical framework, we use the integrated framework for analysing dialogic knowledge production and communication (ifadia)8 that builds on bakhtin’s theory of dialogue.17-19 and foucault’s theory of discourse and power/knowledge.20-22 within this framework, dynamics of inclusion and exclusion are conceptualized in terms of the tensional interplay of multiple voices whereby certain voices – discourses constructing particular forms of knowledge and subjectivities – dominate and others are marginalised. the analysis highlights tensions emanating from the ways in which dialogue in collaborative research relations is ascribed meaning and enacted in the interplay between, on the one hand, a voice that democratizes research and sometimes romanticizes dialogue and, on the other, a sovereign researcher voice maintaining strict boundaries between the researcher and researched. the buzzword status of dialogue, collaboration and related terms articulated in the romantic voice of dialogue was itself performative in masking the tensions in play: since the buzzwords have an unquestionably positive status, it was difficult to reflect critically on the complexities of practices constructed in their terms. as a result, when we articulated the romantic voice, we reproduced an idealized view of dialogue despite our theorisation of dialogue as complex and tension-ridden. the material for analysis is our own narrative account of the initial phase of the project. by exploring the tensions in researchers’ attempts to establish collaborative relations in the first phase of a collaborative research project on health care, the article aims to contribute to the body of critical, reflexive analyses which de-romanticize dialogue and critically interrogate the play of power in collaborative research and teaching practices2,4,8,23-26 as well as in other practices in the dialogic turn such as communication for social change27,28 and public engagement with science and technology.29-32 within this body of critical research, studies have identified obstacles to mutually fruitful collaborative research, arising, variously, from the roots of the academic researcher and the practitioner co-researchers in different [page 2] [qualitative research in medicine & healthcare 2018; 2:7178] article no nco mm er cia l u se on ly social worlds and cultures, from power differences, from adherence to different understandings of what counts as knowledge, and from different expectations as to the research outcome.33-38 there is a relatively small amount of literature on the tensions in the preliminary phase of collaborative research. gayá wicks and reason39 (p. 243) point out that the beginning of the research process is crucial for its success or failure, and they review key challenges, paradoxes and opportunities arising in the preliminary phase of action research. kumsa et al.40 (p. 420) argue that it was particularly important to explore the first stage of their participatory research as [t]his was where the intensities of inequitable relations of power were manifest. cook41 and kristiansen and blochpoulsen42 have written about the challenges of initiating action research that has originated in applications penned by the university researchers alone, reflecting on the paradox that top-down decision-making about the research design was the starting-point for the bottom-up, democratic co-production of knowledge. there is no literature of which we are aware on the phase in which university researchers, in the process of putting together a research application for funding, explore the possibilities for research with potential collaborative partners. filling this gap, our analysis of this phase highlights both the crucial importance and the immense difficulty of establishing relations of mutual trust amongst the participants in collaborative research. it attributes that difficulty to the messy, tensional complexity of dialogue. first we present the material for analysis, a narrative account entitled our story: another one bites the dust! which we, the four co-authors of this article, have written together about the initial phase of the project. then we sketch out our theoretical framework, the integrated framework for analysing dialogic knowledge production and communication and analytical foci. following this, we apply ifadia in analysis of the narrative, focusing on tensions that arose in key dialogic relations in the initial phase. in the discussion and conclusion, we offer a typology of ideal types of collaborative research relations. we illustrate how the typology can be used in the initial phase as a platform for critical, reflexive discussion between researchers and their potential collaborative partners about their respective understandings of collaboration and dialogue and the implications of those understandings for expectations with respect to the research process and results. using a narrative account to unfold the tensions across multiple voices the process of creating the narrative account for analysis (below) began with one of us presenting a paper at a conference two months after receiving the rejection letter from the funding body. in her conference paper, she wrote a narrative to recount her personal experiences of the difficulties of gaining funding for collaborative, dialogic research. after the conference, we used this narrative as a basis for collectively exploring our experiences of the initial phase of the project and, through this process, we wrote the joint narrative. we chose the narrative as the material for analysis on the grounds that the narrative genre draws attention to itself as a narrative, a contingent, situated representation of reality offering partial truths.43,44 this, we believe, is fitting given our intention for analysis of the material to serve as a contribution to discussion about the centrality of establishing collaborative relations in action research and the messy, tensional complexity of dialogue in those relations. stories hold a dialogic potential due to their capacity to keep several viewpoints simultaneously in play.17,43,45 we recognize that we (re)present ourselves in the narrative account through a singular we which papers over internal tensions and differences; at the same time, sticking to this singular we allows us to keep the complexities within manageable bounds given the page limits for this article. the narrative genre allows us to represent and analyze, first, how a story can contain multiple voices and, second, how these voices – discourses constructing knowledge and subjectivities – collide and clash as they merge with and/or contest each other. our story: another one bites the dust! right up our street this story is entitled ‘another one bites the dust!’ as this title indicates, the story doesn’t end well! but it started off well. with an application to a private funding body’s call for collaborative research based on close cooperation between university researchers in the humanities and social sciences and people in the field under study. the funding body’s call was tailor-made for the research we carry out in our centre for dialogic communication; in our centre, close collaboration with the field under study is alfa and omega. we do ‘research with’ rather than ‘research on’ and we pride ourselves on research in which ‘dialogue’ is, at one and the same time, the object of study and a methodological principle. thus we strive to study ‘dialogue’ dialogically through a collaborative research design and with the use of methods for facilitating dialogue. so we followed this model in formulating the collective research project design for our application to the funding body. in treating ‘dialogue’ as methodological principle, the research would be based on a collaborative design in which actors in the field of study would participate as coresearchers, dialogic ethical principles would be followed, and methods would be used for facilitating dialogue in fora for the co-creation of knowledge and practice innovations. the topic was cross-sectoral and inter-professional collaboration in rehabilitation for older people with cognitive impairment, and it aimed both to contribute to practice and to research. the aim with respect to practice was to gener [qualitative research in medicine & healthcare 2018; 2:7178] [page 3] article no nco mm er cia l u se on ly ate knowledge and practice innovations that strengthen collaboration across sectors and professions so that a greater number of older citizens with cognitive impairment and their relatives experience smooth and coherent processes of rehabilitation in which they feel involved and empowered as dialogue partners and agents in collaborative decisionmaking. the aim with respect to research was to contribute to the research field on cross-sectoral and inter-professional collaboration in person-centered social and health care (including care for older people) and to the broader research field on ‘the dialogic turn’. we formulated the practice aim and more specific goals – and also the research design to realize that aim and those goals – on the basis of dialogue with practitioners. dialogue with practitioners we met two groups of practitioners in two different settings – a municipal community health team and a crosssectoral health team. in dialogue with practitioners, we presented our critical, reflexive take on the potentials and tensions of dialogue. ‘collaboration is a good thing’, we said, ‘because, in collaborative practices, we co-create knowledge in dialogue by harnessing difference as a generative force’. and then we went on to say that ‘collaboration’ and ‘dialogue’ and ‘co-creation’ have become policy buzzwords with a taken for granted positive value blinding us to the tensions which stem from power dynamics in which certain knowledge forms dominate and others are marginalised or excluded’. and then we asked ‘do you experience problems when you collaborate that you would like to be tackled through practice-oriented research?’. the practitioners on the frontline of cross-sectoral collaboration and patient-centered care in everyday work practices were enthusiastic as what we said resonated with their understandings of their work practices and the conditions shaping them. they nodded when we said that dialogue had become a buzzword, and they nodded again when we pointed out that dialogue was fraught with tensions that had to do with power relations. and when we asked them to tell us about the problems that they would like to be tackled, they fluently elaborated on a number of problems they faced in their daily work. we said that we would like to tackle those problems with them in collaborative research in which they were co-researchers and, together, we would co-create knowledge in the meeting between our research-based knowledge and their expertise rooted in their everyday work practices and professional knowledge. they replied that they would like to very much. because they wanted to solve the problems and because they appreciated that those problems were complex and could best be tackled bottom-up by opening up to multiple voices, including their own; they were tired of management imposing top-down changes without taking their expertise into account. the hospital consultant (doctor) was also initially very positive. she appreciated what we said about the promise and complexities of dialogue and she rapidly reeled off a list of problems she experienced in cross-sectoral collaboration. she liked the fact that the project would fully compensate financially for the time that staff would spend as co-researchers in dialogue workshops since the department was strapped for resources. without hesitation, she committed herself and her team to the project (obviously pending approval by upper management). at the same time, she told us that she was very busy and that it would suit her best if she first became actively involved if the application was successful. we assured her that that was fine with us and that we would do the work of writing the application but that we would send it to her for comments to ensure that our representation of cross-sectoral practices was accurate and the research design in line with her knowledge of the field of practice. from agreement to skepticism after about 10 days, we sent her a three-page danish language research design to which she sent us comments, all at a rather micro level and within the terms of our project. it took a couple of weeks before we sent her a full draft of the application in english as it took us a long time to meet other partners and to gain a sufficient understanding of the field of practice. it took so long because the field was extremely complex and characterized by huge ongoing structural changes, which meant that not even practitioners had an overview of the field’s complex network of relations. by the time we sent the english language draft, her unhesitant support had shifted to ambivalence. on the one hand, she still liked the practice-oriented nature of our research – that we didn’t just want to contribute to a research field but also wanted to further practice change that would make a positive difference for her workplace, patients and staff. on the other hand, the research design now seemed to clash with her professional and scientific principles. she was skeptical about the ethics of vulnerable, cognitively impaired patients participating as co-researchers; she was unsure about what research-based knowledge we would be contributing; what we called research didn’t resonate with her existing understanding of research where researchers have the monopoly on truth and there are clear lines of demarcation between researchers and researched. her new skepticism surprised us. the earlier danish language research design outline had not seemed to clash with her principles. we wondered if the draft’s english language (a requirement of the funding body) made it harder to relate to. we contacted her and she told us that it was a colleague in the other sector who had sowed doubt in her mind about the project. rejection the colleague who had sowed the doubt was an expractitioner who was now a consultant responsible for development projects designed to improve practice. we had [page 4] [qualitative research in medicine & healthcare 2018; 2:7178] article no nco mm er cia l u se on ly had a meeting with her and she had been negative from the beginning. why that was the case, we can only speculate. we speculate that it may have had something to do with the complex politics of the social and health care system, the blurring of the boundaries between researchers and researched that our collaborative project entailed, and the development consultant’s position as responsible for projects for developing practice. our project offered both research and development, and therefore may have been experienced as invading her territory. while all the other actors had appreciated our bottom-up approach, when we asked her what the problems were, she responded as if she took our question to reflect insecurity and ignorance rather than a commitment to democratic, bottom-up knowledge production. ‘you are the experts, it’s your job to know the answers, why are you asking me?’. whatever the reason, the development consultant rejected our project on behalf of the team of practitioners with which she did development work and sowed the seeds of doubt with the hospital doctor who withdrew her commitment and that of her team the day before the deadline for the application. with the teams with which they collaborate across sectors no longer participating, the two groups of practitioners who had committed themselves enthusiastically to the project were forced to withdraw. a very good example of the domino effect! poor us we handed in an application bereft of key collaborating partners, knowing all too well that it was doomed to rejection given that the call was for practice-oriented research based on close cooperation between researchers and actors in the field under study. six months later, we received the news we had expected. our application had been unsuccessful principally because of the absence of key collaborating partners. we were informed by a representative of the funding body that it was a very highquality application that had been given an excellent evaluation by both the researcher-reviewer and the practitioner-reviewer. in particular, the researcher-reviewer praised the integration of theory and practice and the use of dialogic research principles, theories and methods in order to study dialogue and contribute to both research and practice. at the same time, we were also told that we probably would not have been awarded the grant even if our collaborating partners had not withdrawn. this was because the practitioner-reviewer had criticized the absence in our research design of general practitioners as co-researchers. we pointed out that it is well-known that it is rare for general practitioners in denmark to participate as co-researchers. we also pointed out that it was, in general, much more difficult to establish research collaborations in which collaborating partners participate as co-researchers. especially because co-researchers have to invest significant time (and other resources) compared to practitioners being observed or interviewed in non-collaborative qualitative research relations. and we asked if they ever gave grants to action research or similarly collaborative projects such as ours. her reply was yes, they did. so we read the descriptions of funded qualitative research projects on the funding body’s website, searching for projects that used collaborative methods as well as ethnographic ones (our project would have used both). we found none! there was no sign that any of the funded projects invited their collaborating partners and/or actors in the field to participate as participants in the co-creation of knowledge; the boundaries of researcher and researched were not breached. theoretical framework from dialogic communication theory, our theoretical framework, the integrated framework for the analysis of dialogic knowledge production (ifadia), incorporates bakhtin’s conceptualization of dialogue as relational meaning-making whereby meaning is formed across multiple – and often contradictory and opposing – voices; meaning-making, then, is multi-voiced or polyphonic.17 in polyphonic meaning-making, a struggle takes place between centrifugal and centripetal tendencies towards, respectively, difference and unity. in bakhtin’s understanding, voices are not just the media for speech or the uttered speech of embodied persons but also discourses, ideologies, perspectives or themes.17,18 meaningmaking is tensional and dialogic as it is produced through the polyphonic play of multiple voices, and a person can articulate many voices, including contradictory ones constructing competing knowledges and identities. ifadia goes much further down a poststructuralist path than dialogic communication theory in drawing on foucault’s theory of discourse and power/knowledge which asserts that our knowledge of the world, including our experience of self and others, is constructed in historically contingent discourses which exclude or marginalize other ways of being, knowing and doing.20-22 this poststructuralist development of dialogic communication theory is at the core of ifadia’s analytical lens. although dialogue is linked to power in most dialogic communication theories, the linkage is often left largely unexplored.46 by adding foucault’s theory of discourse and power/knowledge, ifadia becomes analytically equipped for, and oriented towards, exploration of the ways in which the inevitable operation of power/knowledge works, through the articulation of discourses in the context-specific enactment of dialogue, to enable, and set the boundaries for, the action of all participants. this underpins an empirical focus on how the discourse of dialogue itself constitutes a form of governance in which knowledge, power and subjectivities are constructed in particular ways that marginalise or exclude other ways of being, knowing and doing.20-22 ifadia contains a call for [qualitative research in medicine & healthcare 2018; 2:7178] [page 5] article no nco mm er cia l u se on ly reflexivity about the inevitable operation of dynamics of inclusion and exclusion, and advocates reflexive analysis building on empirical, contextand complexity-sensitive study of the tensions in dialogue and collaboration. it follows a critical, foucauldian approach that interrogates the play of power/knowledge in the articulation of dialogue, but, at the same time, it treats critique as the basis for reflexive considerations that can lead to the further development of dialogic practices from a position normatively supportive of the dialogic turn.8 the intention is that critical reflexivity about the production of power/knowledge in the discourse of dialogue can form a platform for a destabilisation of discourse that can open up for practice change in a particular, normatively prescribed, direction. it is not meant as a basis for eradicating exclusion; according to the foucauldian perspective, a dominance-free zone for equal relations is an impossibility and the dominance of certain voices over others is not only inevitable but not necessarily a problem. we are also aware that – from our post-structuralist position that all knowledges are contingent representations of reality – our stance on critique and the concepts we use are discursively constructed from a particular perspective that excludes and marginalizes other perspectives. we are well aware that we are violating dialogic ethical principles in our narrative by using reported speech which paraphrases others’ words and by making speculations about the motivations and reactions of others. furthermore, we know that objectification of the other is inherent in telling others’ stories for them. as letiche puts it, representation steals the other’s voice and imposes the author’s point of view so that [t]he writer is ethically implicated in her (his) inability to do (complete) justice to the other within any episteme of representation47 (p. 274). we can never eliminate objectification even with deliberately multi-voiced texts. however, we believe that we can work with techniques of representation that cultivate the performativity of texts – that texts are positioned in, and act on, the world – and are reflexive about the researcher’s positioning of herself and others and create spaces for multiple voices, understood as discourses constructing knowledges and subjectivities.48-50 selves, for bakhtin, are multi-voiced as they are constituted through the interplay of multiple voices in the negotiation of meaning in dialogue. in contrast to a phenomenological understanding of dialogue as authentic communication based on experience of direct unmediated contact with others51 (p. 138), a bakhtinian approach asserts that all human life is inherently dialogic, and everyday life is saturated with dialogical tensions.8,11 the tensions are intrinsic to struggles between centripetal and centrifugal forces since voices – discourses articulating multiple meanings – are locked in a constant tug-of-war in which some voices dominate over others. applying ifadia as a theoretical framework entails an analytical focus on these tensions. our analysis of the narrative account of the initial phase of the collaborative research project homes in on the ways in which our interaction with potential collaborating partners opened up for dialogue across a polyphonic plurality of voices but also excluded voices and thus privileged certain ways of knowing and marginalised others. our analysis using ifadia addresses the following empirical questions: i) what voices – discourses constructing specific knowledges and subjectivities – are articulated in the attempted establishment of collaborative research relations and when and how are they articulated and heard?; ii) to what extent, when, and how, do the interactions among actors open up for the polyphonic articulation of multiple voices that construct plural forms of knowledge?; iii) to what extent, when, and how do the interactions circumscribe the opening up for different voices, and, along monological lines, construct a singular we and a singular form of knowledge? analysis of the tensions in the enactment of dialogue tensions arose in the interplay between top-down and bottom-up dynamics in the following dialogic relations: relations between our research profile and the funding body and, in particular, the call for applications text,1 relations with potential co-researchers; relations with health care managers who were gatekeepers with respect to recruiting co-researchers; and relations with general practitioners. we deal with each in turn. relations with the funding body in the call for applications, the funding body invited proposals for research in which university researchers and actors in the field under study engage in equal collaboration with a view to contributing both to research and to practice change. our research fitted this call perfectly, as we noted in the first section of our narrative, entitled right up our street. the first section of the narrative includes a commitment to studying dialogue dialogically through a collaborative design in which actors in the field of study would participate as co-researchers but it also outlines the type of theory (a combination of dialogic communication theory and poststructuralist theory on power/knowledge) and the analytical focus (critical, empirical analysis of how new knowledge is created collaboratively through dialogic communication and the tensions at work through dynamics of both inclusion and exclusion). there is a clash here between our adherence to dialogic research principles, on the one hand, and, on the other hand, our identification of theory and analytical focus prior to approaching potential research partners. this clash can be understood as a tension between two competing voices. adherence to dialogic research principles involves the ar[page 6] [qualitative research in medicine & healthcare 2018; 2:7178] article no nco mm er cia l u se on ly ticulation of the voice of democratic researcher who relinquishes her monopoly on truth and engages in co-research with co-researchers; in contrast, the identification of theory and analytical focus solely by the university researchers invokes the conventional, sovereign researcher voice in complete control of the research process. this tension between the voices of democratic researcher and sovereign researcher is also in play in the call for applications: [the funding body] will, therefore, centring on research in the humanities, further equal collaboration between researchers and actors within the social, ageing or environmental areas which are all important areas for funding in the funding body’s daily practice […] the project will embrace both university researchers in the humanities (see next point), perhaps other relevant researchers from other research institutions, and actors from fields of practice in tightly integrated collaborative relations in the different parts of the project. the part of the research that is in the humanities will be carried out by university researchers from the universities (…) and disciplines belonging to the areas covered by the funding body […] the research part must not only consist of applied research, data collection or evaluation reports but must also contain research aims and results that are grounded in pure research in the humanities. the practice part with its focus on development must be methodologically innovative, focus on the documentation of effects and preferably include practice collaborations across professions and sectors. in addition, it must be possible for the practical consequences of the project to be sustained and to be economically sustainable. the democratic researcher voice – in which research is a joint action where university researchers and actors in the field collaborate – is articulated in the requirement that the project must include both university researchers and actors in the practice field in equal collaboration and tightly integrated collaborative relations. however, the authoritative researcher voice dominates through the sharp division of labour whereby the university researchers have sole responsibility for research: the part of the research that is in the humanities will be carried out by university researchers from the universities (…) and disciplines belonging to the areas covered by the funding body. thus the call constructs an understanding of collaboration that maintains clear boundaries between the researchers and the researched. moreover, in line with the norm for funding body applications, the application is expected to map out a clearly delineated research design covering the choice of theory and method to results and impact. while the call for applications stipulates a collaborative design, it also requires a detailed outline of the research plan: the project’s aims and content with respect to research and practice: the project’s relations to current research, practice and challenges in the area (scientific and societal relevance); the project’s target group; the project’s activities and methods; the project’s organisation, organisational anchoring and support including the organisation of collaboration between research and practice; the time-frame, course of events and expected results for the research part, the practice part and the involved citizens. the question is whether it would be at all realistic – within the tight time-frame of six weeks between the announcement of the call and the deadline for applications – to be able to engage in negotiations with potential research partners about the basic theoretical and analytical underpinnings of the project in order to co-produce a detailed outline of the research plan. moreover, we considered it completely infeasible to establish relations and negotiate with potential co-researchers central to the research design patients and relatives given that they would be recruited by the professionals only if the project went ahead. this is particularly paradoxical given that the aim of the research was to empower older people with cognitive impairment (patients) and their relatives as dialogue partners in collaborative decision-making in the rehabilitation process. the infeasibility of the participation of patients and relatives in the proposal phase – and also their almost total absence in our narrative account (we only refer to the hospital doctor’s expression of concern about patients’ ability to participate as co-researchers) – demonstrates the chasm of power between patients and relatives, on the one hand, and academic researchers and social and health care practitioners, on the other. in the narrative section, poor us, we claim that it is much harder and more time-consuming to establish relations in which collaborating partners are engaged as coresearchers than to establish relations in non-collaborative qualitative research in which clear boundaries are maintained between the researcher and researched. the narrative describes how the funding body representative is asked if there are collaborative projects among the funded projects and her answer is yes. it is also noted in the narrative that we would categorize the funded projects as qualitative ethnographically-oriented research rather than collaborative research. all this could be read as if we do not think it is possible for collaborative research projects to be awarded funding. but, actually, we do! we know that collaborative research does get funded in denmark and several of the collaborative research projects in our own research centre have been funded by external funding sources. however, often there is either pressure from fields of practice to carry out research completely on their premises or the researchers carry out the research primarily on their own premises, maintaining clear boundaries with the researched while still labelling the researched co-researchers and the research [qualitative research in medicine & healthcare 2018; 2:7178] [page 7] article no nco mm er cia l u se on ly action research or collaborative research. pressure from fields of practice may lead to an emphasis on practice development and the reproduction of normatively anchored trajectories based on the status quo in the practice field to the detriment of critical research which could challenge taken-for-granted meanings and disrupt the status quo.52 an anchoring of the research in researchers’ own premises may in contrast, lead to aims and results that contribute to the research field but not to practice change. relations with potential co-researchers the section of the narrative entitled dialogue with practitioners described how we presented our approach to dialogue and collaboration in our meetings with potential partners as follows: collaboration’ is a good thing, we said, ‘because, in collaborative practices, we co-create knowledge in dialogue by harnessing difference as a generative force’. and then we went on to say that ‘collaboration and dialogue and co-creation have become policy buzzwords with a taken for granted positive value blinding us to the tensions which stem from power dynamics in which certain knowledge forms dominate and others are marginalised or excluded’. here, we position ourselves as actors with an analytical, critical distance to the practices that we analyse and a critical, reflexive take on our own practice as exponents of collaboration as a good thing. we did not open this framework up for discussion along dialogic lines! we adopted a dialogic approach only after this, articulating the democratic researcher voice by inviting – along bottom-up lines – their experience-based knowledge on problems arising in collaboration that they would like to be tackled through practice-oriented research: and then we asked ‘do you experience problems when you collaborate that you would like to be tackled through practice-oriented research?’. at the same time, we do not position them as co-researchers in the process but as providers of knowledge about a problem which they would like to be tackled through research. thus the democratic researcher voice is merged with a consumerist voice placing actors in the field not as co-researchers but at the receiving-end of a service: they are positioned as consumers, and research is construed as a service to be supplied to fit their consumer needs; to identify those consumer needs, we position them as informants representing the target group of the research service we will supply. the positioning as consumer-informants continues in the next piece of narrative where the team members are positioned as compliant informant-consumers responding positively to our declarations of our standpoint and request: they nodded when we said […] and they nodded again when we pointed out and when we asked them to tell us […] they fluently elaborated. we then describe their acceptance of our offer to tackle the problems together with them in collaborative research as a smooth, uncomplicated process: we said that we would like to (…) co-create knowledge in the meeting between our research-based knowledge and their expertise rooted in their everyday work practices and professional knowledge. they replied that they would like to very much. because they wanted to solve the problems and (…) they were tired of management imposing top-down changes without taking their expertise into account. here, we presume to know with certainty their cognitive and emotional grounds for accepting the offer; instead of clearly demarcating their utterances from ours, their voices are fully subsumed in ours and, in bakhtin’s terms, we finalize them instead of recognizing that selves are unfinalisable since they are formed and reformed through the continuous negotiation of meanings across multiple voices.43 relations with health care managers in the part of the narrative about relations with health care managers, there is a clearly formulated division of labour between the hospital consultant and us – whereby the hospital consultant would only become actively involved if the application was successful and we would do the work of writing the application. this agreement does not invoke the equal collaboration of the call for applications or the notion of co-research integral to our espoused approach to studying dialogue dialogically. but, at the same time, the sovereign researcher voice with its monopoly on truth is not reproduced uncontested. rather, there is a tension between the sovereign researcher voice and a democratic researcher voice which recognizes multiple knowers as experts. on the one hand, we invoke the sovereign researcher voice in positioning ourselves as having the sufficient time and knowledge to be able to take charge of the writing process. on the other hand, we invoke the democratic researcher voice in positioning the hospital consultant as provider of information about practice and in opening up for practice-based expert knowledge. however, the consequence of our taking control of the writing process is that the sovereign researcher voice takes over the design of the project – its metatheory, theory and methodology – as the design is carefully mapped out in the application without the inclusion of, or negotiation with, alternative theoretical or methodological perspectives. as provider of information about practice, the hospital consultant is positioned as an expert but only with respect to practice and hence not on equal terms as partners in co-research with us university researchers. the dominance of the sovereign researcher voice is not acknowledged in our narrative. we write in the first section of the narrative: we formulated the practice aim and more specific goals – and also the research design to realize that aim and those goals – on the basis of dialogue with practitioners. the sovereign researcher voice is articulated here without reflexivity. we, the university researchers, are the we who are the main agents of the action of formulating the practice aims, more specific goals, and [page 8] [qualitative research in medicine & healthcare 2018; 2:7178] article no nco mm er cia l u se on ly the research design; our potential partners are objects with a supporting role as practitioners in which we engage in dialogue. moreover, there is no recognition that, although we attempted to incorporate perspectives presented in our dialogue with practitioners, our taking charge of the writing process necessarily circumscribed the articulation of those perspectives and, therefore, marginalized practitioner voices. in the section of the narrative named from agreement to skepticism, we speculate as to why the hospital consultant is skeptical: the research design now seemed to clash with her professional and scientific principles. she was skeptical about the ethics of vulnerable, cognitively impaired patients participating as co-researchers. we interpret her skepticism as an expression of professional and scientific principles instead of listening to her concerns as legitimate questioning rooted in her professional expertise. the hospital consultant becomes the different other without a legitimate voice, and in the narrative we merely wonder if the draft’s english language (…) made it harder to relate to. in the section of the narrative named rejection, we interpret a conflict between us and a development consultant who acted as gatekeeper for a health care team as the development consultant’s rejection of our invitation to engage in bottom-up knowledge production. we describe how we experienced her response to our questions about how she experienced problems in the field: she responded as if she took our question to reflect insecurity and ignorance rather than a commitment to democratic, bottomup knowledge production. ‘you’re the experts; it’s your job to know the answers, why are you asking me?’. according to the interpretation we put forward in the narrative, then, the development consultant articulates the sovereign researcher voice which establishes a strict boundary between the researcher and researched; for her, expert authority with respect to research rests exclusively with the researcher. relations with general practitioners in the narrative section poor us, it is mentioned that we were informed by the funding body representative that, even if no collaborating partners had withdrawn, the project probably would not have been funded because we had not involved general practitioners in the project design. we note our reaction to this information: we pointed out that it is well-known that it is rare for general practitioners would participate as co-researchers. in denmark, general practitioners have private practices under contract with, and funded by, the public sector. in comparison with the other actors in the project, including the researchers, they have high incomes and a strong trade union. this means that it is generally very difficult to engage general practitioners not only in collaborative research but also in conventional research as informants in interviews. this situation is widely recognized in research circles. discussion we have aimed in this article to contribute to the field of collaborative health care research – and collaborative research in general – by de-romanticising dialogue and arguing for a critical, reflexive approach based on the theoretical framework, ifadia, a combination of bakhtinian dialogic communication theory and foucauldian theory of discourse and power/knowledge. illustrating this approach, our analysis of a narrative account of the initial phase of a collaborative health care research project interrogated the tensions in struggles between multiple voices – discourses articulating different knowledges and subjectivities – enmeshed in a tug-of-war in which some voices dominate and others are marginalised. although ifadia theorises dialogue in terms of complex, tensional dynamics of inclusion and exclusion whereby certain voices dominate and others are marginalised, our analysis of the narrative shows that, in writing the narrative, we were not reflexive about how discourses ascribe contingent meanings to terms, excluding and marginalizing alternative ways of knowing. when writing this article, we – as co-authors – have discussed how we can talk about collaboration and dialogue in ways that acknowledge and explore the different meanings which different discourses ascribe to the terms and the implications these differences have for collaborative research relations. on the basis of our analysis of the narrative, we have constructed a typology of different ideal types of collaboration (figure 1). the typology suggests that most forms of collaborative research articulate one or more of the four ideal typical positions depicted in figure 1 and described below. the typology is not intended as a fixed standard or onesize-fits-all model but as a platform for dialogue – a heuristic to think and talk with – in collective reflections between researchers and potential partners in establishing relations in the initial phase of collaborative research. more specif [qualitative research in medicine & healthcare 2018; 2:7178] [page 9] article figure 1. ideal typical positions in collaborative research relations. no nco mm er cia l u se on ly ically, we suggest that it can be used as a platform for critical, reflexive discussion between researchers and potential partners/co-researchers of the meanings they ascribe to collaboration and dialogue – and the implications of those meanings for expectations with respect to the types and degrees of participation in the research process and with respect to results. in applying the typology as a platform for dialogue in other research projects, different researchers and their potential partners may identify more positions or may conceptualise one or more of the positions we identify differently, and this would be perfectly legitimate. position 1. co-production where the researchers define the project’s aims and content and invite field actors to take part in a fixed, pre-set framework this ideal typical position is often encouraged by funding calls. although calls do not explicitly state that the definition of project aims and content are solely in the hands of the researchers, they tend to assume a pre-set research design. such calls stipulate that the description of the proposed collaborative research project delineates all stages of the research process from the formulation of research question and aims to research design and expected results and impact.41 no heed is taken of the emergent nature of collaborative research whereby the framework is never fixed in advance but co-created by university researchers and coresearchers in the course of the research process. in addition, power imbalance in the field under study can make participation in the formulation of the research proposal impossible for the potential research partners and co-researchers whose lives the research project is ostensibly designed to improve (in our case, patients with cognitive impairment and their relatives). thus, funding calls reproduce the voice of the sovereign researcher in which academic knowledge reigns supreme from start to finish. we referred earlier to literature on the challenges of engaging in action research that has originated in applications penned by the university researchers alone42,53 and also gayá wicks and reason point out that the beginning of the action research process is crucial for its success or failure.39 the further the actors in the field (in our case, patients, relatives and social and health care practitioners) are from being part of the formulation of a collaborative research proposal, the greater the risk that the project does not become a joint project. if the project is not joint, expert knowledge will not be democratized in spaces for co-production and not all participants will have an active stake and a vested interest with respect to the results. position 2. co-production where actors in the field under study define the project’s aims and content and invite the university researchers to take part in a pre-set framework projects based on this ideal typical position take the form of evaluations, phenomenologically oriented descriptions of (best) practice, or experiments to support evidence-based practices. such projects are often in line with neo-liberal discourse whereby research is construed as a commodity and its usefulness is judged in terms of its capacity to generate innovations that strengthen the market position of the researcher, research team, institution or organisation under study.54,55 phillips et al.2 (p. 3) point to how an instrumentalisation of research within the terms of neo-liberal discourse may conflict with views of co-production as processes of mutual learning that are at least as important as the outcome. moreover, staunæs and søndergaard55 (p. 8) note how, in their research project, the practice field was infused not only with neoliberal discourse but also realist discourse which underpinned demands for results within the terms of the prevailing, taken-for-granted ways of talking about, understanding and organising the world. both neoliberal and realist epistemologies clashed with the poststructuralist epistemology of their research which offered reflexivity as a strategy for destabilizing the taken-for-granted and opening up for alternatives (p. 8). we acknowledge that projects designed solely to meet the expectations and demands of the practice field can give valuable insights for the involved actors in the practice field and the research community. however we would argue, from a post-foundationalist perspective, that there is a tendency to take for granted either the greater truth value and objectivity of research-based expert knowledge – in the case of experiments to support evidence-based practices – or the greater truth-value and authenticity of marginalized voices – in the case of phenomenologicallyoriented descriptions of the everyday experiences of, for example, patients or relatives. as we noted earlier, telling others’ stories for them always entails objectification of the other. thus there is a high risk of uncritically and unreflexively reproducing discourses that instrumentalise knowledge production and maintain the status quo3 (p. 274-275). position 3. co-production of central parts of the project in sites for mutual learning across participants’ different forms of knowledge in this position, the starting-point is that, using dialogue methods, the researchers create spaces in which different participants contribute with different forms of knowledge, and new knowledge is co-produced across those different knowledge forms. thus expert knowledge is democratized and difference is cultivated: the spaces open up for a polyphonic multiplicity of voices in dialogue across knowledge forms and experiential backgrounds. this position acknowledges that research itself is not the priority for some participants while it is the total occupation of the academic researchers, and it recognises that participants are not equally engaged in all research phases; rather, they contribute and participate in different ways and to different extents depending on their knowl[page 10] [qualitative research in medicine & healthcare 2018; 2:7178] article no nco mm er cia l u se on ly edge interests, knowledge forms and wishes with respect to the results. this is the ideal typical position on which we assumed our research was based. our view was that we, as researchers, would not be able to produce relevant knowledge about practice through conventional qualitative research methods such as interviews and observations; all the actors in our narrative were needed for the development of relevant knowledge on the complexity of crossdisciplinary and cross-sectoral collaboration. at the same time, we considered that participants would take part in different ways and to different extents as a function of different knowledges, knowledge interests and wishes with respect to the results. position 4. co-production where the project’s aims and all content are co-created by researchers and co-researchers actors in the field. all actors participate on an equal footing and are equally committed this position is the most radical. at the same time, it is probably the position many action researchers strive for and/or claim to reach. here, mutuality is celebrated in all phases of the action research process. this implies that all participants participate on an equal footing and negotiate the framing of all phases – including the analytical process and the communication of results. it underpins the action research criterion of pragmatic validity: that is, that research based on democratising expertise and engaging in the co-production of knowledge not only has the production of new knowledge as a goal but also seeks the mutual learning of all participants through action-oriented inquiry.56 process validity is directed specifically at the extent to which, in the research process itself, problems are defined and addressed collaboratively and the extent to which relations between participants are established and maintained in ways that cultivate the ongoing learning of all participants56 (p. 55). the inclusion of multiple voices is treated as a question of ethics, political recognition and empowerment56 (p. 56). we value the democratic ideals expressed in this position but we are also concerned that it may lead to the romanticisation of dialogue and collaboration whereby participation is understood simply as meaning joint or shared action and differences in types and degrees of participation are unacknowledged42 (p. 194). unacknowledged differences may include differences with respect to which voices are dominant and which are excluded or marginalised in the play of knowledge/power in different phases of the project (including the formulation of the research aims, the design of spaces for co-production and the analysis and communication of results). they may also include differences in the extent to which each participant takes part in decision-making in each of the phases. as cordeiro et al.57 (p. 403) point out, [e]ven a democratic collaborative process can be used to maintain structural status quo as many times the so-called democratic processes assume participants have equal conditions to participate. our journey we suggest that our point of departure was the third position. we wanted to open up for dialogue across multiple forms of knowledge and break down barriers between the potentially involved collaborators in the project. but, at the same time, we recognized that participants (university researchers and co-researchers in the practice field) participate in different ways and to different extents in the project as a function of their prerequisite knowledges, knowledge interests and levels of investment in the results. we did not want, in the terms of irwin, to do structure in invisible and blurred ways58 (p. 171). instead, our ideal was to facilitate processes which cultivate multiple voices – discourses articulating different forms of knowledge and subjectivities – in order to challenge existing institutional structures. and, at the same time, we would engage in reflexive consideration of the inexorable workings of power/knowledge in the collaborative research process itself whereby certain forms of knowledge and subjectivities would necessarily dominate and others would be marginalised. while we began in position 3, we shifted to position 4 on the occasions when we implied that we and our potential partners were all in it together and we did not make clear that we were participating to different extents, with different prerequisites and under different conditions. the challenges that we met in the form of time pressure and re-structuring in the field of practice made it difficult to find relevant people in the practice field sufficiently fast. we glided from position 3 towards position 1 as we took on the task of writing the research application and positioned the collaborating partners as informants with a supporting role. this position somewhere between position 3 and position 1 was actualized in the tension in our narrative between the voice of the sovereign researcher who assumes full control of the research process (position 1) and the voice of the democratic researcher who recognizes multiple knowers as experts (positions 3 and 4). when the collaborating partners withdrew their agreement to participate, we reached the end-station of position 1. here, the voice of the sovereign researcher reigned supreme. we chose to submit the application in the hope of finding new partners who would accept the pre-set research design, were the project, against all odds, to win funding. our journey across ideal typical positions for collaborative research relations can be seen as a product of dynamics of inclusion and exclusion taking place in the struggle between different voices. one voice that constructs knowledge production along monologic lines and ascribes full authority to the sovereign researcher (position 1), another voice that constructs parts of the research process as democratic co-production across difference and positions actors [qualitative research in medicine & healthcare 2018; 2:7178] [page 11] article no nco mm er cia l u se on ly in the field as co-researchers (position 3) and a third voice that constructs, and sometimes romanticizes, dialogue as a meeting of equals on an equal footing and with equal degrees of involvement and commitment (position 4). these different voices ascribe different meanings to collaboration and dialogue. as cook asserts, naming is a convention (… ) the sharing of common terminology builds illusionary consensus, i.e. people use the same words to mean different things41 (p. 2). in the narrative, it appears as if both we and the potential partners assumed that we were talking within the terms of the same discourse when we referred to collaboration and dialogue. we did not critically reflect on how the different voices articulate different understandings of collaboration and dialogue and, accordingly, different expectations for the nature and extent of joint action. our frequent articulation of the romantic voice of dialogue – in spite of our espoused commitment to a theorization of dialogue as complex and tensional – masked the privileging of the sovereign researcher voice in the movement towards position 1 which occurred when we failed to establish collaborative relations along the lines of position 3. we propose the typology as a way of cultivating collaborative relations in the initial phase through providing a platform for dialogue about participants’ understandings of collaboration and dialogue and corresponding expectations with respect to the process and results. references 1. reason p, bradbury h. handbook of action research. london, uk: sage; 2008. 2. phillips l, kristiansen m, vehvilâinen m, gunnarsson e. knowledge and power in collaborative research: a reflexive approach. london, uk: routledge; 2013. 3. edwards r, brannelly t. approaches to democratising qualitative research methods. qual res 2017;17:271-7. 4. gallagher ke. the methodological dilemma: creative, critical and collaborative approaches to qualitative research. london, uk: routledge; 2008. 5. gershon wl. the collaborative turn: working together in qualitative research. rotterdam/boston/taipei: sense publishers; 2009. 6. william p. public collaboration in public policy and practice: perspectives on boundary spanners. bristol: the policy press; 2012. 7. aubert a, soler m. dialogism: the dialogic turn in the social sciences. in: kincheloe j, horn r, eds. the praeger handbook of education and psychology. westport, ct: greenwood press; 2006. 8. phillips l. the promise of dialogue. the dialogic turn in the production and communication of knowledge. amsterdam: john benjamins publishing company; 2011. 9. gomez a, puigvert l, flecha r. critical communicative methodology: informing real social transformation through research. qual inquiry 2011;17:235-45. 10. phillips l. analysing the dialogic turn in the communication of research-based knowledge: an exploration of the tensions in collaborative research. pub understand sci 2011;20(1): 80-100. 11. deetz s, simpson j. critical organizational dialogue: open formation and the demand of ‘otherness’. in: anderson r, baxter l, cissna kn, eds. dialogue: theorizing difference in communication studies. thousand oaks, ca: sage; 2004. pp 141-158. 12. roberts n. calls for dialogue. in: roberts n, ed. the transformative power of dialogue. oxford: elsevier science ltd; 2002. pp 3-24. 13. tsoukas h. a dialogical approach to the creation of new knowledge in organizations. org sci 2009;20:941-57. 14. fischer f. democracy and expertise: reorienting policy inquiry. oxford: oxford university press; 2009. 15. wilsdon j, willis r. see-through science: why public engagement needs to move upstream. london, uk: demos; 2004. 16. dietz t, stern pc. public participation in environmental assessment and decision making. washington, dc: national academies press; 2008. 17. bakhtin mm. the dialogic imagination. four essays. austin & london: university of texas press; 1981. 18. clark k, holquist m. mikhail bakhtin. cambridge, ma: harvard university press; 1984. 19. morris p. the bakhtin reader. bloomsbury: bloomsbury academic; 1994. 20. foucault m. archaeology of knowledge. london, uk: routledge; 1972. 21. foucault m. discipline and punish: the birth of the prison. harmondsworth: penguin; 1977. 22. foucault m. truth and power. in: gordon c, ed. power/knowledge selected interviews and other writings 1972-1977. hemel hempstead: harvester wheatsheaf; 1980. 23. phillips l, napan k. what’s in the ‘co’? tending the tensions in cocreative inquiry in social work education. int j qual stud educ 2016;29:827-44. 24. olesen br, nordentoft hm. walking the talk? a micro-sociological approach ot the co-production of knowledge and power in action research. int j act res 2013;9:67-95. 25. nordentoft hm, olesen br. a critical reflexive perspective on othering in collaborative knowledge production. qual res j [in press]. 26. hong x, falter mm, fecho b. embracing tension: using bakhtinian theory as a means for data analysis. qual stud 2017;17:20-36. 27. cooke b, kothari u. participation: the new tyranny? london, uk: zed books; 2001. 28. dutta m, pal m. dialog theory in marginalized settings: a subaltern studies approach. comm theory 2010;20:363-86. 29. davies s. the rules of engagement: power and interaction in dialogue events. pub understand sci 2013;22:65-79. 30. delgado a, kjølberg k, wickson f. public engagement coming of age: from theory to practice in sts encounters with nanotechnology. pub understand sci 2011;20:826-45. 31. kerr a, cunningham-burley s, tutton r. shifting subject positions: experts and lay people in public dialogue. soc stud sci 2007;37:385-411. 32. stirling a. ‘opening up’ and ‘closing down’: power, participation and pluralism in the social appraisal of technology. sci technol human values 2008;33:262-94. 33. arieli d, friedman vj, agbaria k. the paradox of participation in action research. act res 2009;7:263-90. 34. cunningham ws. voices from the field: practitioner reactions to collaborative research initiatives. act res 2008;6:373-90. [page 12] [qualitative research in medicine & healthcare 2018; 2:7178] article no nco mm er cia l u se on ly 35. kristiansen m, bloch-poulsen j. self-referentiality as a power mechanism, towards dialogic action research. act res 2004;2:371-88. 36. ospina s, dodge j, godsoe b, et al. from consent to mutual inquiry: balancing democracy and authority in action research. act res 2004;2:47-69. 37. pedersen ch, olesen br. what knowledge which relations? sharing dilemmas of an action researcher. int j act res2008;4:254-90. 38. strumińska-kutra m. engaged scholarship: steering between the risks of paternalism, opportunism, and paralysis. organization 2016;23:864-83. 39. gayá wicks p, reason p. initiating action research: challenges and paradoxes of opening communicative space. act res 2009;7:243-62. 40. kumsa mk, chambon a, yan mc, maiter s. catching the shimmers of the social: from the limits of reflexivity to methodological creativity. qual res 2015;15:419-36. 41. cook t. where participatory approaches meet pragmatism in funded (health) research: the challenge of finding meaningful spaces. forum qualitative sozialforschung/forum: qual soc res 2012;13:1-22. 42. kristiansen m. dynamics between organisational change processes and facilitating dissensus in context inquiring dialogues. int j act res 2013;9:1. 43. frank a. what is dialogical research and why should we do it? qual health res 2005;15:964-74. 44. guba e, lincoln y. controversies, contradictions, confluences. in: denzin nk, lincoln ys, eds. the landscape of qualitative research: theories and issues. 1. london, uk: sage; 2008. 45. baxter l. voicing relationships. a dialogic perspective. london, uk: sage; 2011. 46. hammond s, anderson r, cissna k. the problematics of dialogue and power. communication yearbook. 27. london, uk: routledge; 2003. 47. letiche h. polyphony and its other. org stud 2010;31:26177. 48. denzin n. performative ethnography: critical pedagogy and the politics of culture. thousand oaks, ca: sage; 2003. 49. richardson l. fields of play: constructing an academic life. 1997. 50. richardson l, st. pierre e. writing: a method of inquiry. in: denzin nk, lincoln y, eds. collecting and interpreting qualitative materials. london, uk: sage; 2008. 51. craig rt. communication theory as a field. communication theory 1999;9:119-61. 52. bacchi c. why study problematizations? making politics visible. open j pol sci 2012;2:1-8. 53. zimmerman nilsson mh, wennergren a-c, sjöberg u. tensions in communication: teachers and academic facilitators in a critical friendship. act res 2016;0:1-18. 54. nordentoft hm, olesen br. kommunikation i kontekst (communication in context). københavn/cph: munksgaards forlag; 2014. 55. staunæs d, søndergaard dm. who is ready for the results? reflections on the multi-voicedness of useful research. int j qual stud educ 2008;21:3-18. 56. herr k, anderson g. the action research dissertation: a guide for students and faculty. london, uk: sage; 2005. 57. cordeiro l, baldini soares c, rittenmeyer l. unscrambling method and methodology in action research traditions: theoretical conceptualisations of praxis and emancipation. qual res 2017;17:395-407. 58. irwin k. into the dark heart of ethnography: the lived ethics and inequality of intimate field relationships. qual sociol 2006;29:155-75. [qualitative research in medicine & healthcare 2018; 2:7178] [page 13] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2017; 1:7006] [page 121] introduction cardiovascular disease is the leading cause of death in the united states followed closely by stroke.1,2 in 2010, the direct and indirect costs of the two together were estimated to be over three-hundred billion dollars.2 cardiovascular disease and stroke are often caused by too much buildup of cholesterol in the blood. the excessive buildup of cholesterol in the blood is called high cholesterol. some uncontrollable factors that increase one’s risk for high cholesterol are heredity, age, and sex; but patients can reduce their risk by eating a healthy diet, exercising more, maintaining a healthy weight, not smoking, managing chronic illnesses if present, and taking medication when prescribed. nevertheless, 73 million americans live with high cholesterol. one out of three has it under control and less than half are getting any treatment at all in the form of diet modification, increased physical activity or the use of medications.3 however, aggarwal and mosca4 suggest the failure of patients to change their behavior as part of a treatment regimen is not due to a lack of knowledge about high cholesterol. as one form of treatment, statins control the rate of cholesterol produced in the body while increasing the liver’s ability to remove excess from the blood.5 these medications (known by popular brand names like lipitor and crestor) are effective in decreasing morbidity and mortality rates associated with cardiovascular disease, so physicians often prescribe them.6 however in the united states, 40 to 60 percent of patients fail to take them.7 in addition to never taking a statin, a patient may discontinue its use against medical advice, take more or less than prescribed, use it with other drugs it negatively interacts, and disregard recommendations to diet and exercise to maintain a healthy weight.8 poor adherence is common within 3 to 6 months.9 even the ability to accurately foresee one’s risk of heart attack within ten years with or without a statin does not result in the likelihood that a statin will be taken as perscribed.10 patients cite muscle pain as the primary reason for discontinuation, followed by cost and a perceived lack of efficacy. those with low household incomes, who have experienced some muscle pain while on statin therapy, and take other medications for cardiovascular disease are at the highest risk for nonadherence.11,12 patients living in neighborhoods with a high density of hispanics, african americans, or immigrants and females if my cholesterol is…then i foresee…: patient accounts of uncertainty darlene k. drummond institute for writing and rhetoric, dartmouth college, hanover, nh, usa abstract the author examines the talk of patients with high cholesterol as they discuss their experiences of adding a statin to their treatment regimen. the primary objective was to understand patients’ expectations of statins, and their beliefs and feelings as they continued or discontinued use, and to better understand why adherence to a statin regimen is particularly low. while numerous studies report reasons for nonadherence, few apply theory to provide plausible explanations. analysis of the focus group data revealed three major themes. first, patients do not view high cholesterol as serious in light of other major health problems like diabetes and cancer within the household. second, patients believe statins are effective in lowering cholesterol but risky. third, many patients do not understand how high levels of cholesterol are produced in the body and how statins interrupt that process. problematic integration theory is used to explain the uncertainty patients experience when given a diagnosis of high cholesterol, the use of statins to control it, and the quality of information received about both cholesterol and statins. correspondence: darlene k. drummond, institute for writing and rhetoric, dartmouth college, 6250 baker library, room 206b, 25 north main street, hanover, nh 03755, usa. tel.:+1.603.646.9840 fax: +1.603.646.9747. e-mail: darlene.k.drummond@dartmouth.edu key words: medication adherence, high cholesterol, statins, patient accounts, problematic integration, uncertainty. conflict of interest: the author declares no potential conflict of interest. acknowledgments: this article is based on data made available to the author through research conducted at the university of miamihumana health services research center under the direction of vaughn keller and sponsored by astrazeneca. received for publication: 21 august 2017. revision received: 3 october 2017. accepted for publication: 3 october 2017. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright d.k. drummond, 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:121-127 doi:10.4081/qrmh.2017.7006 qualitative research in medicine & healthcare 2017; volume 1:121-127 not males are more likely to be nonadherent.11 discontinuers admit that they fail to regularly monitor their cholesterol, are not satisfied with their physicians’ explanation of cholesterol treatment, and feel the need to use the internet to research statins for themselves.12 medical researchers are not oblivious to the concerns of patients and seek to confirm or disconfirm claims of the adverse effects of statins. a few meta-analyses conclude that some adverse effects include muscular toxicity and/or myopathy,13,14 cataracts,13 raised liver enzymes,14 and diabetes.13,15,16 however, most argue that these effects are small compared to the beneficial effects of statins on major cardiovascular events.14,15 the cholesterol treatment trialists’ (ctt) collaboration17 asserts statins reduce the risk of major vascular events irrespective of age, sex, baseline ldl cholesterol, previous vascular disease or the presence of other diseases. the continued use of statins with at least eighty percent or greater adherence over time is associated with progressively increasing survival rates.18 statins are associated also with lower risks of dementia, cognitive impairment, fractures and pneumonia.14 to date, there is no evidence that connects statins to an increased risk of cognitive decline or to cancer,16,17 to renal disorders, arthritis, depression5 or to adverse effects on mood, sleep, and physical functioning.19,20 in addition to establishing the lack of adherence to statin therapy, discerning the reasons for nonadherence, and investigating the adverse effects of statins, researchers seek to understand the thought process involved in statin nonadherence. chakraborty21 applied the mental models approach to understand lay perceptions in relation to existing scientific information on the risk of nonadherence. he found statin-nonadherent patients negatively perceive the healthcare system, the food and drug administration, the drug industry, government, and insurance companies, and consequentially believe statins are too risky. he concluded that these patients do not trust the information they receive from major stakeholders in the fight against cardiovascular disease. although insightful, these findings seem incomplete. we still do not understand the patient’s thought process when a statin is added as part of the treatment plan, or how she or he evaluates its worth and continued use. we do not fully understand why statin adherence is low. to me, distrust signals misgivings, questions, doubts, suspicions or uncertainties about something or someone. problematic integration theory suggests we orient to our world based not solely on our beliefs but consider what issues are associated with those beliefs and the evaluative meanings those associations hold for us.22-24 it proposes that illness involves the endless experience of the problematic integration of one’s beliefs or expectations with one’s desires.25 the theory organizes types of uncertainty into a coherent framework and asserts that we are often uncertain about how to integrate a particular belief with other beliefs.24 my objective was to ascertain the perceptions, beliefs, understandings, and uncertainties of patients about high cholesterol and the use of a statin, and then discuss those findings using problematic integration theory. a clearer understanding of this thought-process may assist physicians in devising more effective ways in addressing high cholesterol with their patients. materials and methods my study draws upon existing data from a previous investigation (sponsored by a major drug company) that consisted of focus-group interviews conducted with high-cholesterol patients and their spouses residing within 20 miles of a focus-group facility in the southeastern region of the united states.26 all procedures were approved by an institutional review board. in that previous investigation, i served as a focus-group facilitator. statin adherent and nonadherent participants were recruited from the claims database of a major health insurance company via telephone and prepared script. the health insurance company designated a patient as non-adherent when he or she ceased using a statin for at least 3 months after a minimum of six months of therapy. the majority of patients were white, middleclass, and between the ages of 45-78. a total of thirty-two patient-spouse dyads were assigned to four primary focus groups based on the patient’s statin-adherence status. this resulted in two adherent and two nonadherent groups. after interviews were conducted with the patient-spouse dyads, we placed each individual into a patient-only or spouseonly group for additional interviewing. utilizing a semi-structured interview format, participants were asked about their reactions to a high-cholesterol diagnosis, treatment plans, and how these issues impacted their relationships. the sessions were videotaped and professionally transcribed. i analyzed the transcriptions utilizing mccracken’s27 five-step guideline for qualitative analysis and owen’s28 framework of identifying key terms. first, i sorted responses addressing a highcholesterol diagnosis, statins, and adherence. then examined the transcripts within and across focus groups based on adherence status to identify any logical relationships and contradictions. third, i re-read the transcripts to confirm or disconfirm emerging reasons for adherence or nonadherence within specific contexts. then i reviewed themes to determine connections between and across various contexts. finally in using mccracken’s27 guidelines, i examined the resulting themes within a framework of published research on statin adherence and problematic integration theory. in addition, i looked for the repetition of key words that were significant in describing a certain experience or feeling; examined meanings threaded throughout the text, and identified important words or phrases displayed through the use of vocal inflection, volume, or emphasis.28 three major themes emerged. first, patients do not view hc as serious in light of other major health problems within the household. second, patients [page 122] [qualitative research in medicine & healthcare 2017; 1:7006] article believe statins are effective in lowering cholesterol but risky. third, many patients do not understand the disease process and how statins interrupt that process. results high cholesterol is not serious whether adherent or not, patients believe the best way to manage high cholesterol is with a combination of healthy eating, exercising and taking a statin. however, as indicated in the following comments, they do not view a diagnosis of high cholesterol as significant especially if genetic or in comparison to other health problems that exist within the household. (note. af=adherent female, am=adherent male, nf=nonadherent female, nm=nonadherent male). af1: it’s not like you have cancer or something. am1: that’s true. my father died at 87. he smoked 3 packs of camel a day and died from lung cancer. af2: i don’t think about my cholesterol at all! who thinks about cholesterol when you are going to be operated on and be in a brace? nf: does cholesterol have symptoms? i don’t know of any! [laughing] nf: my mom’s first five siblings died of parkinson’s. that’s what i’m worried about! nm: it’s not a priority item. it’s not something that i think is going to affect me immediately, or that is going to create a problem that can’t be taken care of. nf: families have lived with it through generations. that’s part of their body make up and it may not be a concern although doctors are focused in on that. most of the patients and their spouses have multiple health problems. therefore for them, a diagnosis of high cholesterol fits into a complex hierarchy of health issues in which immediate pain and perceived vulnerability are the criteria governing how serious an illness is judged. cancer, diabetes, other chronic illnesses, and trauma are often viewed as much more important than a high-cholesterol diagnosis. these illnesses have visible symptoms and consequences, unlike high cholesterol. some patients view cholesterol simply as a natural component of body functioning. they do not connect directly or indirectly the deaths of any loved ones to a diagnosis of high cholesterol. they have witnessed others live with it for years and do not view or speak of high cholesterol as a precursor to cardiovascular disease or stroke. it is believed to be inconsequential. statins are safe but risky in the transcripts, patients talk about statins available on the market, side effects, prescription plans and cost. they acknowledge they are blessed to have health insurance that keeps costs down. adherent patients expressed concerns about side-effects, and with the support of their physicians, some switched to another medication. they interpreted the results of blood tests indicating lowered cholesterol levels as evidence of the positive effect of statins. however, some thought they would eventually learn something unfavorable about statins. notice in the following exchange how these patients seem aware of the importance of a healthy diet, but are also cognizant of how difficult it is to maintain one. they see taking a statin as the quickest and easiest solution to the problem, although they have lingering thoughts in the back of their minds of the possibility of receiving bad news about the negative effects of statin use based on current mediated reports of other drugs. regardless, statin-adherent patients are willing to take the risk. (note. m=male, and f=female). m1: i think a lot of times we take these medications thinking we can eat anything because my cholesterol’s going to start coming down. m2: practically speaking, i’m not always going to eat right. i’m happy that i’m losing weight and maybe in ten years i could be down to the weight that i’m supposed to be. it doesn’t bother me at all to say that in ten years i’m going to be taking the same pills, because for me it’s genetic anyway. it’s a small price to pay. it doesn’t hurt, so i take the pill. f: it’s definitely the easier way out than discipline. m3: it’s out of my mind unless i see something in the media that makes me think, “maybe this stuff is going to turn out to be bad news one day like viox.” i’ll be thinking “god, i took that stuff for years no wonder i’m screwed up!” both adherent and nonadherent patients alike do not believe the healthcare system and science will ever have a comprehensible explanation for high cholesterol or a definitive answer about the most effective way to treat it. if adherent, patients hold on to the hope that they are doing the right thing by taking a statin, and if nonadherent, patients are comfortable questioning the motives of corporations as illustrated in the following. (note: am=adherent male, nm=nonadherent male, and nf=nonadherent female). am: if i’m still taking the medicine i’m hoping it’s not going to be a problem. i think cholesterol might be a big hoax from the medical industry. plenty of people live to be old with hc. if i find out it’s a hoax i’m going to be really mad! nm: companies are selling these pills and they’re making a fortune. they want everybody on it. nf: yes, it’s just business. it’s about the medical association getting us to buy drugs. a few nonadherent patients chose to concentrate on diet and exercise and did not take a statin especially if this was their first chronic disease medication. others took an and if stance. these nonadherent patients declared that they would use a statin only under the following conditions: i) their high cholesterol was proven to be genetic and ii) maintenance of a healthy diet did not work. as one man stated: [qualitative research in medicine & healthcare 2017; 1:7006] [page 123] article if my cholesterol is caused by genetics, then i foresee myself in ten years taking whatever the new or the prescribed medication to control cholesterol. if, in ten years, medical science says, “we’re on the same path. we do believe the same things we believed ten years ago.” and if it isn’t my diet. and if i decide to really do something about my diet, where as i become – this is it, i’m going to try and stay within a completely healthy diet, and if it doesn’t change, i absolutely foresee in ten years me taking lipitor. in addition to simply choosing not to take a statin, many patients connected their nonadherence directly to the negative side effects they experienced when taking one. these nonadherent patients suffered muscle aches and in some instances excruciating pain when using a statin. some worked with their doctor to find another statin that did not cause any pain. alternatively, doctors successfully reduced the dosage of the undesirable statin for some patients, while other patients were instructed to take in addition to the undesirable statin, another cholesterol-lowering drug, ezetimibe (zetia) to address adverse effects. a few took matters into their own hands and reduced the dosage of the offending drug before consulting a doctor. the angst of finding the right statin without side effects is clear in the following exchange. (note. nm=nonadherent male, and nf=nonadherent female). nm: yes, i’ve tried crestor and zocor, every one of them. with every one i’ve had some muscle distress. some worse than others. there is a percentage of the population they say that cannot take this medication because you are one of the two percent that has this thing, and i’m probably part of that two percent. but maybe i’m not. so then what do you do? nf: i thought, “well, i don’t want liver disease.” and my mother had died of liver disease, so i was really unhappy with my doctor. i really didn’t want to take it but he insisted that i take it. i took what he gave me and cut it in half, and took that. i think doctors overmedicate, so i self-adjusted. it really did not agree with me. subsequently, i was switched to another one. i was on zocor and switched to lipitor, and i did feel better. in sum, both adherent and nonadherent patients question the ability and desire of the healthcare system and science to find a cure for high cholesterol. patients living with high cholesterol believe statins work but question whether or not the benefits outweigh the risks. many are nonadherent during a drug switching process due to muscle-pain side effects. a few nonadherent patients do not want to take a statin at all while other nonadherent patients take an and if stance where a decision to take a statin is based on i) discovering their high cholesterol is genetic and ii) whether they have the ability to sustain lifestyle changes involving diet. statin-adherent patients view a statin as the quickest and easiest solution in comparison to lifestyle modification requiring a change in diet. ignorance is bliss patients do not understand the biochemistry at work with cholesterol lowering drugs or the influence of cholesterol on the formation of plaque. the relationship between high cholesterol, heart attacks and stroke are rarely mentioned. in other words, there is a serious gap in the understanding of the disease process at work and how statins interfere with that disease process, as follows. (note. f=female, and m=male). f: i was more concerned about my liver than cholesterol. maybe because i’m not too informed about cholesterol. i don’t know. m: i have the same question she had, like really i don’t know the seriousness of cholesterol. nobody ever explained it to me. i really don’t know the symptoms either. i figured i’d take the pills for six months and be alright. many patients with high cholesterol do not know their numbers or keep good records as we see in the comments of f below. m: what’s hdl in cholesterol? f: i don’t know. m: how high is your hdl? f: i don’t know. i can’t remember. they’re written down somewhere. it’s not the kind of thing you know unless it’s bad. this lack of understanding leads to an overreliance on statins and a mindset that seems to value dietary change but does not result in behavior change. instead, patients resort to blaming their physicians for not providing them with information or answers to their questions, as in the following: f1: it would be nice to have a paper diet or something. f2: i wish that they had sent me to a nutritionist. f3: i have never been recommended to a nutritionist by any doctor ever. m1: i’ve had three heart attacks – one in 1986, in 1990, and in 2005. my cholesterol had been around 300. i’ve used mevacor, lipitor and now i’m on vytorin. they all brought my numbers down and i’ve had no side effects, but the doctors never gave me a nutritional system. m2: i discussed sending me to a nutritionist with my doctor and he poo pooed it! so now i’ve had eight bypasses. f2: they had ice cream on the hospital tray after my bypass surgery and justified it! nevertheless, some patients wanted to know more about cholesterol. when a more knowledgeable person in the group spoke, people paid attention. several acknowledged that simply engaging in the focus group process encouraged them to seek out more information and in some cases, consider changing their behavior. the following is an example of the types of explanations of cholesterol shared: [page 124] [qualitative research in medicine & healthcare 2017; 1:7006] article f: clots stop your arteries. image a greasy buildup like in a hose. you turn on the faucet and have the water go through the hose. well, suppose there is an obstruction in the hose. the water may flow through or not with the force that you want it to. well, that’s going to happen with cholesterol. it’s like a greasy or fat buildup inside the vein. it clogs up the vein, and then there’s problems with blood flowing through and it’s scary, because it can easily cause a heart attack or stroke. in sum, ignorance may be bliss. many living with high cholesterol do not understand what it is, how it effects the body, how it causes or is an agent in the development of other chronic illnesses. they do not understand the role of a statin beyond its ability to lower cholesterol. as long as one feels good and does not experience negative side effects of a statin, the conclusion is that things are okay. if things are not going well, then the fault lies with physicians who fail to provide the specific information needed to affect change. what if, either-or, both-and, according to whom? high-cholesterol patients live with uncertainty. uncertainty is apparent in their communication with one another indicating the substance of their cognitive and emotional processing. their talk serves to construct, illuminate, confuse, confront, and alter probabilistic and evaluative orientations as a productive endeavor through which they come to understand their experiences as problematic.22 one type of uncertainty that patients experience, has to do with the complexity at the core of the illness itself.25 some patients do not understand what high cholesterol is and how it effects the body. most have an expectation that illnesses have symptoms, and therefore cannot take a high-cholesterol diagnosis seriously in comparison to other illnesses experienced within the household with visible symptoms. families tend to prioritize the treatment of illnesses based on the degree of pain experienced and evidence of physical deterioration that interferes with quality of life.29-31 sells et al.30 label this behavior a virtual cascade of crises (p. 95). for these high-cholesterol patients, the nonexistence of symptoms is positively associated with the evaluation of high cholesterol as nothing to be truly concerned. the probabilistic orientation experienced by high-cholesterol patients as a certainty that high cholesterol is not serious is further complicated by another type of uncertainty. this type of uncertainty relates to the nature of one’s judgment about the likelihood of particular outcomes.24,25 evaluative orientations address whether or not an object or outcome is good or bad.22 in this case, the object of focus is the statin prescribed. first, the patient determines the likelihood that he or she is at risk of experiencing some negative outcome like a stroke due to a diagnosis of high cholesterol. if at risk, then one must decide to take a statin to lower one’s cholesterol level or engage in lifestyle modification through diet and exercise. this is an either-or not a both-and situation. specific causes reasoned as crucial precedents to certain outcomes are at the heart of risk assessment.32 therefore, if the outcome of taking a statin results in lowing cholesterol then one must have had high cholesterol and in some cases that high cholesterol was caused by genetics. if no side effects are experienced then there is no perceived need for lifestyle changes. however, if taking a statin causes excruciating muscle pain that is not resolvable through switching or dosage modification, then a statin may be assessed as too risky and the focus becomes the less desirable alternative of lifestyle modification. improved cholesterol numbers satisfy the expectations of the patient while simultaneously fulfilling one’s desire to continue with one’s current lifestyle. patients are creating cognitive maps based on a variety of cause-and-effect beliefs and their evaluations of links between beliefs. concerns about the accuracy, sufficiency, reliability and validity of information also lead to uncertainty.22,24,25 individuals selectively evaluate, bracket, integrate, and compare information from a variety of sources.32 for these high-cholesterol patients key sources of information include the media, one’s physician, one another and key stakeholders in the healthcare system. media in the form of direct-to-consumer advertising promotes over-diagnosis of high cholesterol and over-treatment for those who the use of a statin presents more risks than benefits.33 these advertisements portray statins as miracle drugs in lowering cholesterol while simultaneously casting doubt on the efficacy of lifestyle changes as sustainable. as a result, patients tend to view diet and exercise as less important.21,33,34 such mixed messaging conflict with common wisdom resulting in uncertainty and questions about the reliability of mediated messages. as previously noted, aggarwal and mosca4 suggest that nonadherence is not due to a lack of knowledge about high cholesterol. i argue however, that these patients do not understand the relationship between high cholesterol and its comorbidities and feel it is the responsibility of physicians to make sure they do. because physicians fail to provide sufficient information, patients believe it is not important to know the specifics of high cholesterol. this belief is positively associated with the belief that high cholesterol is not serious anyway. this probabilistic orientation experienced as certainty is then challenged by knowledge acquired through learning more about high cholesterol and statins from listening to other patients resulting in a quandary of how to evaluate and organize incoming messages.24 additionally, many high-cholesterol patients, as in other studies21,33 believe insurance companies are greedy and profit driven; and that the healthcare system is ineffective. such distrust of the government, drug industry and science increases perceptions of risk associated with statin adherence. questions then arise about the credibility of these sources and whether one should view as valid any information from them. [qualitative research in medicine & healthcare 2017; 1:7006] [page 125] article conclusions my findings support those of other studies9,10,12 that the side effect of muscle pain from the use of statins is a major reason for nonadherence. however, aggarwal and mosca’s4 assertion that a lack of knowledge about high cholesterol is not linked to statin-nonadherence was not supported. unlike the conclusions drawn in previous works4,9,10,12 my findings suggest that the major problem for the high-cholesterol patient is the probabilistic orientation that high cholesterol is not serious. this initial belief held by patients complicates the formation and maintenance of other positive probabilistic and evaluative orientations toward believing that sustained behavior modification consisting of eating healthier, increasing physical activity, and taking a statin consistently over time are worth the effort. as a result, high cholesterol patients live with uncertainty that is not necessarily experienced as bad. at times, they may actively seek to reduce or manage it, but are not likely to see it resolved through more information. they are more likely to use what babrow24 refers to as piecemeal coping strategies (p. 563) through reappraisal and accepting things as they are, or by reframing as an opportunity for self-exploration. these findings suggest that physicians may have the greatest impact on high-cholesterol patients’ understanding and beliefs at initial diagnosis. more attention should be given to sharing information about its link to cardiovascular disease, stroke and other comorbidities to foreground its threat. patients must see high cholesterol as serious as they view cancer. this study should be viewed in light of a few limitations. findings reflect primarily the experiences of white middle-class women with health insurance. personality factors such as introversion, extroversion, degree of optimism or pessimism, were not taken into consideration. in addition, demographic factors such as, level of education, religion, race, and gender were not considered. in future studies exploring statin adherence and nonadherence in the context of living with high cholesterol, researchers should consider the aforementioned personality and demographic factors. we must identify the rhetorical strategies used by physicians with patients who do view a diagnosis of high cholesterol seriously. what is the structure and specific content of these persuasive messages? discourse analyses of actual sessions in which physician diagnose high cholesterol may be the most enlightening. how did patients process these messages? one-on-one in-depth interviews with patients should provide even more insight into relevant thought processes. references 1. cdc centers for disease control and prevention. deaths and mortality. retrieved 9-28-2017. available from: https://www.cdc.gov/nchs/fastats/deaths.htm 2. birtcher k. when compliance is an issue: how to enhance statin adherence and address adverse effects. curr atheroscler rep 2015;17:471-8. 3. cdc centers for disease control and prevention. cholesterol. c2015 [cited 2017 aug 9]. available from: http://www.cdc.gov./cholesterol/facts.htm 4. aggarwal b, mosca l. lifestyle and psychosocial risk factors predict non-adherence to medication. ann behav med 2010;40:228-33. 5. american heart association. heart disease and stroke statistics: our guide to current statistics and the supplement to our heart and stroke facts. dallas, tx: aha; 2008. 6. ho ckm, walker sw. statins and their interactions with other lipid-modifying medications: safety issues in the elderly. ther adv drug safety 2012;3:35-46. 7. christensen aj. patient adherence to medical treatment regimens: bridging the gap between behavioral science and biomedicine. new haven, ct: yale university press; 2004. 8. cook pf. adherence to medications. in: o’donohue wt, levensky er, eds. promoting treatment adherence: a practical handbook for health care providers. thousand oaks, ca: sage; 2006. pp 183-202. 9. mann dm, allegrante jp, natarajan s, et al. predictors of adherence to statins for primary prevention. cardiovasc drugs ther 2007;21:311-6. 10. mann dm, ponieman d, montori vm, et al. the statin choice decision aid in primary care: a randomized trial. patient educ couns 2010;80:138-40. 11. abbass i, revere l, mitchell j, appari a. medication nonadherence: the role of cost, community, and individual factors. health serv res 2017;52:1511-33. 12. wei my, ito mk, cohen jd, et al. predictors of statin adherence, switching, and discontinuation in the usage survey: understanding the use of statins in america and gaps in patient education. j clin lipidol 2013;7:472-83. 13. sirtori cr. the pharmacology of statins. pharmacol res 2014;88:3-11. 14. macedo af, taylor fc, casas, jp, et al. unintended effects of statins from observational studies in the general population: systematic review and meta-analysis. bmc med 2014;12:1-13. 15. sattar n, preiss d, murray hm, et al. statins and risk of incident diabetes: a collaborative meta-analysis of randomized statin trials. lancet 2010;375:735-42. 16. jukema jw, cannon cp, de craen ajm, et al. the controversies of statin therapy: weighing the evidence. j am coll cardiol 2012;60:875-81. 17. cholesterol treatment trialists’ (ctt) collaboration. the effects of lowering ldl cholesterol with statin therapy in people at low risk of vascular disease: meta-analysis of individual data from 27 randomised trials. lancet 2012;380:581-90. 18. simpson rj, mendys p. the effects of adherence and persistence on clinical outcomes in patients treated with statins: a systematic review. j clin lipidol 2010;4:462-71. 19. o’neil a, sanna l, redlich c, et al. the impact of statins on psychological wellbeing: a systematic review and metaanalysis. bmc med 2012;10:1-9. 20. swiger kj, manalac rj, blaha mj, et al. statins, mood, sleep, and physical function: a systematic review. eur j clin pharmacol 2014;70:1413-22. 21. chakraborty s. part i: the role of trust in patient noncompliance: a qualitative case study of users of statins for the chronic treatment of high-cholesterol in new york city. j [page 126] [qualitative research in medicine & healthcare 2017; 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1988. 28. owen wf. interpretive themes in relational communication. q j speech 1984;70:274-87. 29. doherty wj, campbell tl. families and health. thousand oaks, ca: sage; 1988. 30. sells d, sledge wh, wieland m, et al. cascading crises, resilience and social support within the onset and development of multiple chronic conditions. chronic illn 2009;5:92-102. 31. kirkegaard p, edwards a, risor mb, thomsen jl. risk of cardiovascular disease? a qualitative study of risk interpretation among patients with high cholesterol. bmc fam pract 2013;14:137-42. 32. russell ld, babrow as. risk in the making: narrative, problematic integration, and the social construction of risk. commun theory 2011;21:239-60. 33. niederdeppe j, byrne s, avery rj, cantor j. direct-to-consumer television advertising exposure, diagnosis with highcholesterol, and statin use. j gen intern med 2013;28: 886-93. 34. byrne s, niederdeppe j, avery rj, cantor j. “when diet and exercise are not enough”: an examination of lifestyle change inefficacy claims in direct-to-consumer advertising. health commun 2013;28:800-13. [qualitative research in medicine & healthcare 2017; 1:7006] [page 127] article layout 1 welcome to volume 7, number 1 of qualitative research in medicine & healthcare. as i read through each of the articles in this issue, it occurred to me that they are surprisingly similar in technique, but widely divergent in topic. indeed, taken together, articles in this issue provide a useful lesson in how to effectively conduct qualitative research. i speak from experience. i am fortunate in being paid to teach a course in research methods to polite, engaged undergraduates who are genuinely eager to learn. in the course, i cover research ethics, journal article structure, deductive vs. inductive approaches, and basic techniques used in quantitative and qualitative research. not surprisingly, teaching qualitative research is my favorite part of the course, so i save it for the end. as it happened, this semester, the qualitative part of the course coincided with my editing articles for this issue. i found myself sharing these articles with my students again and again to illustrate abstract course concepts with concrete examples. for example, in class, we talk about the necessity of using small samples in qualitative research, balanced by the richness of meaning and depth of human experience provided by participants testimony about their lives. in this issue, for example, thomas a. clobes and heather craig alonge use interviews with latina college students to illustrate the precarious position these students found themselves in during the covid-19 epidemic as they weighed worries about job loss, distrust of conflicting information with the need to maintain their health and the health of their family members. similarly, rachel m. vaughn and her co-writers dig down into the experience of healthcare providers during roughly the same period of time—again providing witness to the daily experience of professionals on the “frontline” of the epidemic as they, too, examine conflicting needs involving service to patients and colleagues, on one hand, and maintenance of their own wellbeing and that of their families, on the other. although the topic is different in the accounts of women surgeons provided by mari thiart and her colleagues, the balance of frustration and accomplishment in their words is just as palpable. i use the word “balance” deliberately here because good qualitative research is never wholly one-sided, but profoundly nuanced. qualitative research is also about stories—a topic that i cover not only in my research methods course, but also during the entire semester in my course on health narrative. each of these articles features stories—in whole or as fragments of memory—through which participants take charge of their respective interviews or focus group discussions, framing an ongoing issue in the present through reference to past experience. and it’s more than that because when telling stories, participants order events to demonstrate how they perceive causatio n and response, thus revealing and defending their perceptions about power, privilege, duty, service, honor, and many other of deeply human concerns. as i write this, i am particularly thinking of a story in thiart et al. about a woman surgeon who wondered for years whether she was hired based on her merit or because she was “a girl.” latina students’ stories in clobes and alonge are not only revelatory of each person’s unique experiences; repetitions among stories— such being confused after hearing conflicting government recommendations—demonstrate common experiences across entire populations. editorial: using qualitative research in the classroom warren bareiss department of fine arts & communication studies, university of south carolina upstate, spartanburg, south carolina, usa correspondence: warren bareiss, department of fine arts & communication studies, university of south carolina upstate, spartanburg, south carolina, usa. e-mail: bareiss@uscupstate.edu key words: qualitative research; teaching; methodology. received: 21 april 2023. accepted: 21 april 2023. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2023 licensee pagepress, italy qualitative research in medicine & healthcare 2023; 7:11429 doi:10.4081/qrmh.2023.11429 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. [page 32] [qualitative research in medicine & healthcare 2023; 7:11429] qualitative research in medicine & healthcare 2023; volume 7:11429 no nco mm er cia l u se on ly furthermore, through repetition, scholars conducting qualitative research recognize emergent themes. more often than not, these themes illustrate the interpretive dimension of of qualitative research, arguably the most difficult. interpretation is the most difficult and frustrating point of the qualitative research process, worse yet for the scholar who works alone. every article in this issue is a worthy exemplar in interpretive thematic analysis. vaughn et al., for example, describe rehabilitation therapists’ feelings of riding an “emotional rollercoaster” and working in “war time” during the covid epidemic. not only are the themes revelatory of therapists’ professional experiences, but their use of metaphor succinctly and directly emphasizes the affective dimension of their day-to-day lives at work. i want to be very clear in saying that in presenting the words of many participants in their studies, not a single author in this issue ever speaks “for” those participants. to do so would be patronizing. participants don’t need to be given a voice by scholars; as demonstrated over and over in this research, participants already have their voices. rather, interpretive scholarship is a kind of double turn—an interpretation of others’ interpretations. having written about phenomenological scholarship in a previous editorial for qrmh, i only want to point readers toward this technique in each of the articles presented here. clobes and alonge, for instance, combine many participants’ stories into a metanarrative including reference to family structure, economics, and class division within the u.s. latino population. it is also important to point out that the best interpretive research (and by extension, all qualitative research) eschews dogmatism. it’s a two-way street in that scholars have to truly listen to the voices of their participants, even (especially!) when participants’ views run counter to what researchers might want to hear. surprises abound in qualitative research for those who are willing to take a chance in being open to the unexpected. as i write this, i am thinking of the story in thiart et al. in which one of the harshest critics of women surgeons in a hospital was a woman supervisor. this would come as a surprise to many, and to their credit, thiart and her colleagues took that idea—which ran very much against the feminist grain of their article—and dug down into it, revealing the compelling reason for that supervisor’s harsh tone. finally, i must point out that each article in this issue provides a lesson in interpretive methodology. without doubt, the single criticism that i most often see among qrmh reviewers is that authors don’t explain the steps taken in conducting data analysis. each article here provides a clear picture of the interpretive process from start to finish. clobes and alonge, for example, explain how they moved from observation to codes and then, themes. vaughn et al., go even further, describing how they used an established six-step analytical process followed by further steps in identifying themes, and ultimately, seeking external verification of themes via consultation with colleagues external to the study. thiart et al. describe how themes emerged through discourse among the writing team and that member checking was used to verify those codes as well as the eventual interpretation. taken together, these articles provide a clear guide for student and professional researchers in both how to analyze data and how to represent that process on the page. i am fortunate in being among the first people to read work published in qrmh, to be able to share this material with my students as models for conducting insightful, inspiring, and useful qualitative research and, now, in being able to share it with you. references vaughn, r. m., bagatell, n., mcgovern, h., feinberg, r., hendry, k., chowdhury, r., cassidy, j. m. (2023). politics, policies, and patient care: rehabilitation therapists’ experiences during the covid-19 pandemic. qualitative research in medicine and healthcare, 7(1), 10823. https://doi.org/ 10.4081/qrmh.2023.10823 clobes, t. a., alonge, h. c. (2023). young latina college students’ perspectives on mask-wearing post lifting of mask mandates. qualitative research in medicine and healthcare, 7(1), 10837. https://doi.org/10.4081/qrmh.2023.10837 thiart, m., o’connor, m., müller, j., holland, n., bantjes, j., (2023). operating in the margins: women’s lived experience of training and working in orthopaedic surgery in south africa. qualitative research in medicine and healthcare, 7(1), 10902. https://doi.org/10.4081/qrmh.2023.10902 [qualitative research in medicine & healthcare 2023; 7:11429] [page 33] editorial no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2017; 1:7383] [page iii] there’s a crack in everything. that’s how the light gets in. get after that light. this is your assignment.1 i take this mandate from the quotation in erin castelloe’s beautiful opening piece to welcome our readers, authors and reviewers to the third issue of qualitative research in medicine and healthcare: the first issue of 2018. i am thankful to have gotten this far, with seven great articles in the issue, and already look forward to publishing even more analyses of the cracks and light that are the assignment of qualitative researchers. as i see it, the articles in this issue are woven together by a common thread, which is the notion of cultural context. culture in this case is not static or homogenous, or even a variable and divisible quantity, as in the construct of subcultures; rather, it is systems, processes, and often fraught dynamics of and in communication. in tincture of time, the second piece by castelloe in her two-part reflection on her positioning within the medical profession and her decision to leave clinical practice, the author searches for a definition of burnout that may capture her own experience. castelloe locates multiple meanings generated by multiple stakeholders, somewhere in the schism between the relationship of healing and the demands of (managed) healthcare. she notices that though many physicians’ and patients’ lives are deeply affected by the burnout of health care providers, analyses and explanations of burnout go no further than individualist accounts, thus completely neglecting the systemic culture of burnout that isolates physicians from each other as well as those they wish they could take care of. the empirical work in this issue shows equal commitment to explicating cultural contexts by first, attention to participants’ lived experiences and, second, suggestions for transformation of current cultural understanding of healthcare praxis. by way of their thick participation2 in the culture of resident physicians, foster, defenbaugh, biery and dostal take a grounded theory approach to analyze the activities of a resident assessment facilitation team (raft). in resident assessment facilitation team: collaborative support for activated learning, the authors begin by attending to interactional terms by which residents account for their own engagement in learning, and move from there to theorize that residents’ ability to fully participate in physician-patient communication can only happen by means of active, co-participatory learning, supported by teaching faculty. for this to happen, the authors recommend that the time dedicated to the facilitation of activated learning allow for self-reflection and self-assessment on the residents’ part. in mandates of maternity at a science museum, a fascinating study of how a museum exhibit – where information is seemingly transmitted to the public, under the guise of neutrality and education – is in fact an agent of cultural socialization, lee also attests to the communicative complexity of learning environments. lee’s argument about communication is particularly compelling, for it speaks to its material and consequential power – speech is action, it does what is says. thus, an exhibit of motherhood performs cultural norms and prescriptions of what motherhood should and could be like, placing women in asymmetries of knowledge vis-à-vis the exhibitors, and ultimately making them solely accountable (and subject to blame) for motherhood as an individual responsibility. it is nice to see how, in their own empirical investigations, davis et al., drummond, colvin et al. and sworonski et al. pick up and elaborate on the ways in which communication is the key to culture-making. in patient-centered outcomes: a qualitative exploration patient experience with encephalograms in the ed, davis, beverly, hernandez-nino, wyman and asimos allow us to listen to the voices of patients dealing with editor’s introduction mariaelena bartesaghi department of communication, university of south florida, tampa, fl, usa correspondence: mariaelena bartesaghi, department of communication, university of south florida, 4202 e fowler ave cis 3057, tampa, 33620 fl, usa. tel: +1.813.974.2145 fax: +1.813.974.6817. e-mail: mbartesaghi@usf.edu received for publication: 25 february 2018. accepted for publication: 26 february 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright m. bartesaghi, 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:iii-iv doi:10.4081/qrmh.2017.7383 qualitative research in medicine & healthcare 2017; volume 1:iii-iv no nco mm er cia l u se on ly seizures in the emergency department (ed). what is interesting to me reading their work is to find out that what matters most to patients is not so much whether they receive an encephalogram or that a particular plan of care be undertaken by the medical team, but that physicians validate patients’ experiences with seizures by carefully explaining exactly which treatment they will be receiving. by attending to the patients’ accounts of their experiences in the ed, the authors’ unique insight is that patients want to trust their doctors! what they need to do so is clear, two-way communication in order to feel safe and taken seriously. by offering a nuanced and complex narrative of the patient experience, drummond’s piece continues in this vein to explore the culture of uncertainty surrounding cholesterol and statins. if my cholesterol is…then i foresee: patient accounts of uncertainty, constructs a picture of patients as conflicted as to whether to take statins at all, largely due to a misunderstanding of how these drugs work and what benefits they have. this, even though statins are prescribed to them by their physicians. issues of noncompliance (as they are characterized) on the part of patients are of course a bane of physician’s existence, and yet understanding patients in terms of compliance misses the point of how they account for their reasons for not taking medications. drummond’s article is therefore an important move in changing the culture of the patientphysician relationship. in her close analysis of communication strategies employed by members of an emergency response team, colvin takes up the concep of knotworking. knotworking in an emergency response team: understanding team communication and process is a study of how team members understand their work in multiple and overlapping systemic terms, constantly responding to the moment to moment requirements of crisis, as well as repositioning themselves with respect to each other. the author does a fine job of examining the complexities, dilemmas and tensions of the work of knotworking, which is never homogenous and involves members’ orientation to multiple asymmetries. what i find particularly insightful and refreshing about this work is the author’s discussion of power as both a matter for negotiation and a (cultural) resource for the team to find new ways of doing things. the final article in this issue explicitly addresses communication, change and cultural context by taking us to norway. in the significance of cultural norms and clinical logics for the perception of possible relapse in rural northern norway: sensing symptoms of cancer, sworonski, risør and foss present findings from ethnographic fieldwork and in depth interviews to argue that sensory experiences – as is pain, for example – are not natural, but symbolic, and culturally mediated. because we can never be in another person’s body, the incarnate is always mediated by communication, and symptoms are therefore not ontologically fixed, but contingent on sensemaking. what the authors’ insightful analysis helps us realize is that, in order to be realized as symptoms for the patient, sensory experiences need to be legitimated by healthcare providers. whether we acknowledge it or not, cultural contexts are always performed collaboratively, always (multi)systemic, as well as complex, dilemmatic, and tensional. qualitative research – which cannot but engage researchers in the universe they study – helps us appreciate just how much, and opens the door to changing the practices that conceal how communication works and could work. references 1. https://www.brainpickings.org/2017/05/15/focus-wendymacnaughton-courtney-martinposter/53. 2. a phrase coined by srikant sarangi, to argue for the importance of an analyst’s membership and ability to belong in the world she is studying. [page iv] [qualitative research in medicine & healthcare 2017; 1:7383] editorial no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2022; 6:10296] [page 41] introduction the first coronavirus case was recognized in the united states (us) on january 19th, 2020, and the world health organization (who) declared pandemic status on march 11, 2020. as of may 31, 2022, there were over 82.8 million infections and more than one million deaths reported in the united states. during most of 2020, the us recorded the highest number of daily cases in the world with a 1.8% case fatality rate per 100,000. by september 2020 (the endpoint of our study period), califorviews from the trenches: california family physicians’ challenges and resilience factors while providing patient care during the initial wave of covid-19 avital fischer,1* johanna shapiro,2* tan nguyen,2 gabriela meckler,3 tien lam,4 uyen mai,4 reece fenning,3 jan paolo de la cruz,4 cynthia haq2 1department of psychiatry, stanford school of medicine; 2department of family medicine, uc irvine school of medicine; 3uc irvine school of medicine; 4uc irvine, california, united states *contributed equally to the work abstract this study examined challenges and factors promoting resilience among 20 california family physicians (fps) during the first six months of the covid-19 pandemic. a subset of academic, community, and resident fps who responded to an online survey also participated in a semi-structured interview that explored concerns, moral distress, burnout, resource needs, support systems, coping strategies, and motivation to continue caring for patients. thematic analysis was used to identify common themes in participant interviews. interviewees demonstrated adaptability, resilience, and grit (i.e., commitment to completing a valued goal in the face of setbacks and adversity) despite challenges disrupting patient care, fears for family and self, and frustration due to the politicization of the pandemic. factors promoting well-being and perseverance included professional and personal support, strong coping skills, and focusing on the meaning derived from practicing medicine. a service orientation that permeates family medicine philosophy and values motivated practitioners to continue to provide patient care while dealing with overwhelming personal and structural challenges. fps drew strength from their internal coping skills, core family medicine values, and external support, notwithstanding demoralizing effects of mixed messages and politicization of the pandemic. fps demonstrated resilience and grit in the face of challenges created by the covid-19 pandemic. ensuring adequate resources to promote a physically and psychologically healthy workforce while increasing access to care for all patients is crucial to prepare for the next healthcare crisis. correspondence: johanna shapiro, department of family medicine, uc irvine school of medicine, uci medical center, bldg. 200 rte. 81, 101 the city drive south, orange ca 92868-3298, united states. tel.: 949-338-4640 e-mail: jfshapir@hs.uci.edu key words: family physicians; pandemics; covid-19; burnout, professional; psychological distress; coping; psychological resilience; positive motivation; professional quality of life. acknowledgments: we gratefully acknowledge the contributions of the following individuals – mindy smith phd, for review and critique of manuscript drafts; john billimek phd, for methodological guidance; allison slater ms4 for assistance with interviewing, data interpretation, and literature review; anna rasmussen ms3, kathleen lo ms4, kelton mock ms4, marvin paguio bs, and catthi ly for interviewing and interpretation of interviews; allison bray ms4 and ashima kundu for assistance with the literature review; danny ngo pgy3 and laura zavala pgy3 for assistance in interview development and pilot testing, and the physicians and residents who took the time to share their stories with such grace and courage. we would like to recognize the invaluable guidance and assistance of dr. warren bareiss in helping the authors craft this paper in a way that best communicated their data and conclusions. finally, our thanks to teresa carrara for her expert work in editing this manuscript. conflict of interest: the authors declare no conflict of interest. availability of data and materials: all data generated or analyzed during this study are included in this published article. ethics approval and consent to participate: the study was exempt from institutional review board oversight in accordance with the criteria outlined by the university of california irvine irb. informed consent: not applicable. received for publication: 22 november 2021. revision received: 11 july 2022. accepted for publication: 11 july 2022. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2022 licensee pagepress, italy qualitative research in medicine & healthcare 2022; 6:10296 doi:10.4081/qrmh.2022.10296 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. qualitative research in medicine & healthcare 2022; volume 6:10296 no nco mm er cia l u se on ly nia—the most populous state in the us—reported almost 16,000 covid-19-related deaths and 819,342 cases.1 during a pandemic, as in ordinary times, patients’ first contact with the health system is usually through primary care.2 primary care clinicians (pccs) include family physicians (fps), pediatricians, general internists, geriatricians, obstetrician-gynecologists, as well as nurse practitioners and physician assistants who specialize in these five fields. pccs are at the forefront of disease prevention and management, health promotion, and vaccine administration.3,4 for example, pccs were extensively involved with patient care and policy implementation in the 2009/a/h1n1 pandemic.5 within the pcc framework, fps play a distinctive role as guardians of family and community health. fps are often the first choice of access to primary healthcare by patients and families as they care for patients of all ages. in the current covid-19 pandemic, fps serve as frontline clinicians, continuing to offer primary care while identifying and mitigating covid-19 spread.2,6 they provide essential healthcare access in health professional shortage and underserved areas, often acting as a “primary care safety net.”7 black, native american, latinx populations, and individuals with lower education levels have experienced higher incidence and case-fatality rates of covid-19,8,9 and fps often are these communities’ primary healthcare resource. thus, fps are especially important to the pandemic response. by december, 2020, california, which is home to the largest number of family physicians in the u.s., had become the epicenter of the covid-19 pandemic, setting new records each week for number of cases.10 because fps in california had such broad exposure to patients with covid-19 during the first phase of the pandemic, we believe an analysis of their experiences will be of value to family doctors, other pccs, and policymakers elsewhere. a survey of pccs’ perceptions regarding the covid19 pandemic concluded that the u.s. has had a high level of pandemic politicization, in that its pandemic responses often seemed more driven by political perspectives than by medical facts.11 the politicization of the pandemic, with its accompanying misinformation, disinformation, and cultural missteps exacerbated an already growing mistrust and resentment toward the healthcare system in recent years.12 in some cases, this led to attacks on physicians conveying public health messages including publishing private information, armed protesters outside physicians’ residences, vandalism, harassing telephone calls and social media posts, and threats of physical harm.13 the politicization of a disease and resultant mistrust of physicians can be demoralizing for fps who rely on trusting, long-term relationships with patients to deliver effective care. to ensure that the primary care workforce is prepared for future pandemics, it is important to examine occupational challenges faced by pccs on the front lines of the covid-19 pandemic.14 a recent study revealed that 51% of healthcare workers worldwide reported burnout during this pandemic.15 fps experience some of the highest rates of burnout, characterized by exhaustion, cynicism, depersonalization, and reduced job efficacy,16 compared to other medical specialties.17 increased job stress has been shown to correlate with increasing burnout.18 during the current pandemic, physicians have also experienced significant moral injury and distress which occurs when there has been a betrayal of “what’s right” either by authority figures or by oneself.19 for the purposes of this study, we define “moral distress” as any event with moral implications that results in psychological suffering for those experiencing it.20 yet in spite of moral distress and other stressors, some individuals exhibit resilience in the face of increased job demands and personal and professional concerns.21 to frame our investigation, we drew on two, then eventually three, theoretical frameworks. stress and coping theory and resilience theory formed the basis for developing our question route. as we engaged with data analysis and interpretation, we added a third theoretical model—ethics of care—to help us better explain what participants’ answers revealed about their motivation and commitment to care. stress and coping theory is a fundamental approach when investigating how individuals deal with distressing life events. pioneering work of lazarus and folkman22 found that psychological stress arises when a person appraises a situation as exceeding their internal and external resources and as posing a threat to their well-being.23 in this model, coping is a constantly evolving behavioral and cognitive response to stressful situations. the theory acknowledges that there can be ongoing disruption to an individual’s equilibrium resulting from persistent adversity, followed by continuous efforts to restore a steady emotional state.24 coping consists of two primary dimensions: problemfocused coping (taking action to change the stressful environment) and emotion-focused coping (managing the emotional reactions to the stressor). although research concluded that problem-focused coping was generally more effective and productive than emotion-focused coping, the theory allows for benefits from the latter, especially in circumstances in which the individual perceives that no positive action can be taken.25 in stress and coping theory, appraisal (how the individual assesses the situation) is central. primary appraisal has to do with identifying the nature, meaning, and significance of an event. secondary appraisal occurs when the person decides the event is stressful and then evaluates their internal coping resources (self-efficacy), external resources, and personal coping style (what they’ve done successfully in the past). action to mobilize these resources is the result. an unsuccessful outcome requires further reappraisal and coping.24 [page 42] [qualitative research in medicine & healthcare 2022; 6:10296] article no nco mm er cia l u se on ly our study was also informed by resilience theory. we used as a guiding framework masten’s definition of resilience as “the capacity of a system to adapt successfully to significant challenges that threaten its function, viability, or development.”26 in general, resilience is understood as a state, not a trait.27-29 like the stress and coping model, resilience theory describes a dynamic process in which resilience may appear and disappear, and may manifest more in one area than another.30,31 resilience has been posited as an antidote to burnout,32 a phenomenon which has taken a tremendous toll on the physician workforce.33 resilience theory first emerged when researchers noted that while adversity acts as the trigger for emotional strain or tension, it can also result in increased adaptability and even growth.34,35 in this sense, adversity becomes a necessary condition for resilience. this led to an interest in what factors caused people to manifest resilience. van breda posed the question: “why, when people are exposed to the same stress which causes some to become ill, do some remain healthy?”36 resilience theory seeks to explain the balance between risk factors (low coping selfefficacy, cognitive inflexibility, poor emotional regulation, minimal social network) and protective factors (effective coping, realistic optimism, cognitive flexibility, effective emotional regulation, self-care, and a strong social network, including both familial and organizational support)37 that enables individuals to regroup and recommit to positive action.38 in an insight of relevance to our inquiry, lifton observed that when societal guardrails crumble—as happened during the early days of the pandemic— alienation and demoralization can occur that may heighten perceptions of adversity and the need for resilience.39 aldin concluded that severe stress can arise when there is a mismatch between stressors and culturally patterned coping responses40 (such as the assumptions and routine practices embedded in the culture of medicine). as part of this investigation, we wanted to identify factors that contributed not only to individual physician coping and resilience, but also to their “grit” in the face of unpredictable challenges. we define “resilience” as the ability to recover mental and physical equilibrium after experiencing adversity.41 “grit” refers to the perseverance and passion necessary to sustain commitment toward completing a specific endeavor despite episodes of failure, setbacks, and adversity.42,43 we sought a more nuanced understanding of underlying contributors to the tenacity characteristic of both resilience and grit, which in these physicians manifested as a diligent sense of moral responsibility toward patients. stress, coping, and resilience theories focus almost exclusively on the individual’s well-being.44 however, the field of family medicine is grounded on principles of ethical, compassionate care not only for each patient, but for families and communities as well. for this reason, we felt that ethics of care theory would be relevant in understanding family physicians’ motivations to continue working during the covid-19 pandemic. ethics of care theory focuses on our relations with others, particularly when we have explicitly assumed the responsibility of caring for the other.45 in ethics of care, the answer to the question “what should i do?” lies not in the individual or the group, but in relationships characterized by attentiveness and empathy. people in caring relationships are acting for “self-and-other together.”46 the interests of caregivers and care recipients are interrelated, not separate. in contrast to ethical theories such as utilitarianism, deontology, and principalism that are based on universal obligations, care ethics focuses on the distinct responsibilities one person owes another as a result of specific circumstances (such as the therapeutic contract implied in the doctor-patient relationship). there are many arguments that an ethics of care cannot exist without considering the needs of disadvantaged, oppressed groups. for instance, newer formulations of ethics of care theory contend that responsibilities for care extend not only to individuals, but to communities and populations that have experienced historical discrimination. 47,48 based on our review of these three theoretical frameworks, the overall purpose of this study was to explore the resilience and motivations of frontline family physicians to continue patient care during the initial six months of the covid-19 pandemic. our first goal was to determine fps’ perceptions of adversity, i.e., the perceived stressors and concerns they experienced. our next goal was to identify fps’ coping strategies in response to these stressors. our third goal was to explore how these challenges influenced burnout and moral distress, thus potentially building resilience and grit to sustain patient care. the study was exempt from institutional review board oversight in accordance with the criteria outlined by the university of california irvine irb. materials and methods subjects this qualitative pilot study was based on a sample of 20 fps practicing/training in california during the initial wave of the covid-19 pandemic. the sample size was determined by theoretical and practical thematic saturation of the data.49 interviews took place from july to september 2020. participants were recruited through professional email listservs by first being invited to respond to a brief survey questionnaire and then to participate in one 60-minute, semi-structured interview about their experiences and concerns when treating patients. two hundred and nineteen individuals completed the survey, and 41 indicated a willingness to participate in the interview. after 20 interviews, we achieved thematic saturation and a balanced sample based on gender and prac [qualitative research in medicine & healthcare 2022; 6:10296] [page 43] article no nco mm er cia l u se on ly tice settings (12 males, eight females, five academic, five community-based, and 10 resident fps). data collection we developed and used a semi-structured interview guide consisting of nine open-ended questions organized in a progressive sequence to ensure topics were addressed systematically across participants.50-52 the research team developed questions based on our literature review and clinical experiences (see appendix). the team piloted and modified interview questions as a result of feedback from three resident and faculty volunteers. questions prompted participants’ personal and professional concerns and challenges when treating patients during the pandemic, how the pandemic affected their relationships with patients and family members, the extent to which the pandemic had affected their well-being, and sources of burden, burnout, and moral distress. we also queried participants about support, coping strategies, and motivation to continue patient care as well as their recommendations for support and resources from their health system, residency, public health, and government leaders. procedures the interviewing team consisted of a medical/phd student, seven other medical students, and four undergraduate, pre-health professional students. eight of the researchers were female. all interviewers participated in two 60-minute training sessions on conducting a semistructured interview over zoom and received training materials including a summary of key points about interviewing, such as how to paraphrase, clarify, and use probes. readings and zoom discussions addressed issues of reflexivity. for example, during zoom discussions, we noted that because the team consisted of students aspiring to careers in healthcare, they might be more likely to view participants positively and interpret their statements in the most favorable light. this reflexive self-awareness was intended to help interviewers be more thoughtful about how they interpreted participants’ answers. the interviewing team was supervised by an academic family physician and a psychologist faculty member. prior to their interviews, participants were guaranteed anonymity; participants’ names and all other identifying and contact information were eliminated from the interview data transcription. interviewers also stated that participation was voluntary, and participants could at any time stop the interview and/or refuse to answer any question. interviewers also obtained verbal consent to record the interview, and only the audio portion was recorded. interviewers built rapport by identifying themselves as medical or pre-health professional students committed to healthcare and eager to understand the impact of the pandemic on fps. they emphasized the value of learning about the experiences and stories of fps working on the frontlines during the pandemic to inform future efforts. participants were interviewed from their homes or clinics. after obtaining consent, a pair of researchers interviewed each participant. only the researchers and the respective participant were present on zoom. one researcher led the interview while the other took detailed notes. definitions of terms (e.g., “burnout,” “moral distress”) were provided in the survey that all participants completed prior to the interview, and clarifications were given during the interview if requested. the two interviewers debriefed with each other after each interview to clarify and reflect on the interaction. anonymized transcripts were generated automatically from zoom technology and reviewed by interviewers to correct errors in transcription. team members performed ongoing review of interviews and made minor adjustments to subsequent interviews. data collection was terminated when thematic saturation was achieved, i.e., when interviewers determined that no new information was being obtained through the interview process. data analysis and interpretation data analysis followed the steps of thematic analysis.53,54 the research team familiarized itself with the data by listening to the audio recordings and having all transcribed data reviewed by the research sub-teams. these sub-teams first generated initial codes independently for recurring topics represented in their assigned transcripts. afterward, they compared notes with their partner and created a unified summary of initial codes. faculty researchers reviewed, compared, and modified these initial codes across sub-teams and shared them with the larger group. this comparative process enabled us to identify new codes that all sub-team pairs could subsequently use to recode earlier transcripts and apply to new transcripts. next, the research team worked together to identify sub-themes based on the codes that linked concepts across codes. sub-themes were subsequently categorized using an axial coding approach based on emergent interrelationships and patterns. the team addressed intercoder reliability by discussing any disagreements until these were resolved. relationships among these themes provided the basis for a conceptual model (see figure 1). throughout this research, we created an audit trail consisting of field notes and team meeting summaries. results adversity and appraisal participants experienced the initial phase of the pandemic as stressful, disorienting, and frustrating. although initial concerns varied somewhat among resident, academic, and community physicians, there was widespread confusion and stress. participants voiced fears that california would replicate the explosion of cases and deaths [page 44] [qualitative research in medicine & healthcare 2022; 6:10296] article no nco mm er cia l u se on ly elsewhere. one participant asked, “would we have to run the hospital like an apocalyptic setting?” referencing the overwhelmed physicians on the east coast, another participant recalled, “[we worried] we would be expected to work like new yorkers.” residents experienced confusion and frustration due to a lack of clear guidance. examples included not knowing whether to wear masks and being pulled from outpatient training to do inpatient work. participants in all groups expressed anxiety regarding their unknown future. a community physician commented that “the toughest day emotionally was at the very beginning when none of us knew what was going to happen.” fps expressed widespread concern for their patients because of inadequate knowledge about covid-19, inequities in access to care, and reduced access to usual primary care services. they voiced significant trepidation about their patients’ well-being and health outcomes, often accompanied by a sense of helplessness in the face of limited covid-19 treatment options. an academic physician said, “it’s just supportive care. [we’re] waiting and hoping that patients don’t get sicker around day eight to 10.” some fps disclosed anxiety about economic and racial inequities exacerbated by the pandemic: we have patients [who] rely on health insurance that’s largely provided by their employers when… businesses are letting people go and unemployment is skyrocketing. [this pandemic] exposes the limitations of the health system. others worried about patients who suffered from chronic diseases delaying routine care, that’s when we start to see people come into the hospital with bad exacerbations of their chronic disease. because they weren’t going to see their doctor or clinic. they weren’t coming to the hospital when they initially needed to. concerns about vulnerable patients and communities were a manifestation of the fps’ dedication to underserved populations who often had special difficulty managing persistent medical conditions because of physical and psychological constraints imposed by the pandemic. professional, financial, and educational concerns were also expressed. several participants mentioned fears for the health of colleagues and staff, for example: “i worry more about exposure to our staff members who may be coming in asymptomatic or pre-symptomatic actually.” both community and academic physicians discussed apprehension about financial impacts of the pandemic. patients were reluctant to see their doctors for fear of contracting covid-19, so the assumptions on which the financial health of many practices were based simply dissolved. community physicians, in particular, feared their practices closing or being laid off. [qualitative research in medicine & healthcare 2022; 6:10296] [page 45] article figure 1. adversity, coping, support and motivation toward resilience influencing california family physicians’ capacity to continue caring for patients during the early phase of the covid-19 pandemic. no nco mm er cia l u se on ly most residents, and some academic physicians, were concerned that resident education would be negatively affected by the pandemic because of altered responsibilities and inadequate exposure to a variety of patients. in the words of one academic physician, “the teaching component of our practice was hindered.” from the resident perspective, one trainee stated: [the pandemic] affects the medical education process. we may not be able to complete our residency or may have to travel somewhere else to get a particular rotation. [i worry] how it’s going to affect my residency training. as priorities shifted to caring for as many patients as possible, the pre-pandemic scope of training became a secondary consideration. personal concerns regarding contracting covid-19 and spreading it to family members and loved ones also surfaced. fps’ primary worry was that they could potentially infect family members, and almost all participants mentioned taking special precautions to remove hospital clothing or even moving to another residence: “[it’s] bringing the virus home, especially with having two kids and a wife.” some feared contracting the disease themselves. one resident described this worry as: “[you] just feel like you’re still naked, despite wearing all those protective measures.” although a few participants were not concerned because they were healthy and young or had already contracted and recovered from covid-19, worries about transmitting or contracting covid-19 created conflicts between participants’ personal and work lives. moral distress fps’ feelings of frustration regarding people not adhering to public health guidelines, politicization of the pandemic, and inadequate production and distribution of ppe were pervasive and intense. participants’ common reactions to adversities triggered by the pandemic were discomfort, disbelief, and outright anger resulting at times in moral distress. as one participant explained, “it’s just nuts to be a medical person and see that there is so little respect for science.” nearly all participants expressed frustration at some people’s unwillingness to take the disease seriously or their skepticism regarding the reality of the pandemic, “it‘s been frustrating watching individuals who have not taken scientists and public health officials seriously. i think it’s, you know, directly contributed to a lot of unnecessary suffering and death.” one physician summed up the mask controversy as “just infuriating, absurd.” several physicians shared their perceptions that people were acting selfishly. one community physician complained, “people care so much just about themselves that they show no regard for other people.” another physician noted: you look at people in the community, and they’re just ignoring it. they’re putting their family members at risk. they’re putting other people in the community at risk. they’re putting healthcare providers at great risk. a few physicians were disappointed with patients who did not disclose their covid-19-positive status prior to visits or, conversely, with patients who reported symptoms just to get covid-19 testing. participants expressed a break in trust between the physician and patient due to such patient behaviors. in one case, the patient did not inform the doctor of his covid-19 diagnosis until after the physical exam: “it took everything not to come down on him and to be supportive, but that hurt. [i]t shows a total lack of respect and consideration.” another participant commented similarly: and then they start lying. and i would say that probably about a third of the covid tests i’ve ordered are based on patients lying to me, and i’ve never felt that so strongly before that patients are lying to me, just to get what they want. these quotes illustrate that fps found the relational disruption that occurred in some cases during the pandemic to be especially demoralizing and hard to accept. yet this disgruntlement, although widespread, was not a uniform reaction. other physicians showed surprising tolerance in the face of deceptive or thoughtless patient actions. as one fp reported: i think it would be easier if they would just wear masks, but i also think we have to somehow communicate that in a better way than just like mask shaming them and just yelling “hey, wear a mask” because, like, their concerns are valid in a sense. responses such as this one demonstrate that while some participants were disillusioned in response to patient behavior, others were more sanguine about maintaining a therapeutic relationship. almost all participants forcefully conveyed their exasperation that, months into the pandemic, the country had been unable to ramp up testing and production of ppe. in the words of one irritated participant, “limited cooperation among people in different cities and states and in different types of leadership around the country, you know, varying politicization of the pandemic was very frustrating.” another physician blamed lack of leadership from the top: “when we have the commander in chief really not guiding the public, that drives me bonkers.” fps communicated pervasive disappointment and anger at the prevalence of misinformation, lack of clear guidance or uniform policies from the federal government, as well as a sense of disillusionment at the inade[page 46] [qualitative research in medicine & healthcare 2022; 6:10296] article no nco mm er cia l u se on ly quacies of our public health system’s response. in another example, a participant stated, “they’re not able to see through the politics to see that this is a public health problem.” a different participant expressed their frustration as: when it comes to advising people about their health and about what they can do to prevent the spread of the virus, i think we have really suffered from not having a united voice. on many occasions, most participants declared a sense of betrayal at the inadequate national response to the pandemic. burnout vs. resilience participants described their initial reactions to the pandemic as concern, fear, frustration, and anger. while the majority appraised their abilities to respond to the situation positively and reacted with resilience, some responded with an intensification of burnout, both independent of and associated with moral distress. increased burnout among residents and attending physicians was attributed to increased workload and feelings of lack of trust from patients. an fp put it this way: “it’s [the pandemic] taken over all of our lives. i mean, i think it’s extremely negative, really.” although residents tended to refer to stress more than burnout, we sometimes could infer the presence of the latter because of intense negative emotions they expressed during their interviews. a different participant stated, “it’s [the pandemic] draining your energy, not just physically, but emotionally and mentally; it’s draining you out.” overall, residents expressed more burnout than faculty and felt the pandemic was a significant contributor. a few physicians in practice reported that their burnout was worsening because of the pandemic. several noted they were more burned-out early in the pandemic, but they learned to accept the new status quo by establishing “a new normal.” women fps were more likely to express burnout than men; they tended to highlight the pressures of clinical and administrative work and the lack of time for self-care and work-life balance as causes. despite increased job demands and pressures leading to feelings of burnout, growth through resilience was the dominant response for a majority of participants. some participants said that they had not experienced burnout at all. several alluded to the inherent satisfaction of their work and appreciation from patients as being protective against burnout, for example, “joy will protect against burnout, even if you’re working hard.” one resident asserted, “[i’m] going on with my life the way that my life would have gone on, essentially, even if there wasn’t a pandemic.” participants overall perceived themselves as resilient. they cited their ability to adapt to telehealth, applying new technology that required reconfiguring the nature of doctor-patient communication. a few physicians did share frustrations regarding their inability to physically examine patients, for instance: “i mean, it’s a real art to it [clinical medicine], and it’s difficult with these new barriers to establish rapport with a new patient.” however, others observed that telehealth promoted greater connectedness with enhanced access and opportunities to observe patients in their homes. several noted that they were impressed with their own and their colleagues’ flexibility, adaptability, and ease of adjustment to this new reality. one fp summed up this sentiment as, “a lot of people have done a lot of great work adapting to a very difficult situation.” other examples of adaptability included adjusting to new work schedules and assuming new roles. these fps shared how their breadth of knowledge and scope of practice enabled them to quickly pivot to alleviate burdens on emergency and critical care colleagues. overall, although the pandemic intensified burnout for some, especially residents, for most, the focus was on resilience and adaptability. achieving and maintaining resilience participants described the support they received and their coping strategies (both problem-focused and positive emotion-focused) that fostered their resilience. sharing with colleagues, improving patient care, spending time with family, and engaging in self-care were important means of problem-focused coping, while cognitive strategies to manage negative emotions were examples of emotion-focused coping. participants acknowledged talking with colleagues as an important form of coping: “it’s sharing, sharing our thoughts and feelings with each other, with the residents and just making sure we take care of ourselves.” a community physician mentioned the importance of support from other physicians: “i have some really, really, really great [physician] friends and we spend a lot of time talking and texting and calling each other. so that is definitely how i decompress.” several residents also reported developing more meaningful connections with co-residents due to the pandemic. one noted, “everybody in my residency, from residents to faculty from the hospital, they’re very, very supportive. so i think that just makes a difference.” another said, “i actually feel like i’ve connected with more people in a deeper level this year than any other year.” other participants expressed similar feelings about how much they relied on colleagues who were also living through the challenges of the pandemic. family and friends served as confidants to discuss stress in the workplace. participants often commented that spending time with family, playing with their children, and sharing experiences with friends and partners was rejuvenating: “i know there was someone inside the house that i can talk to. it makes you forget even temporarily the stress of going to work, especially now with the pandemic.” another physician commented, “i feel very calm. i am fortunate. i really have strong supportive friends, a [qualitative research in medicine & healthcare 2022; 6:10296] [page 47] article no nco mm er cia l u se on ly very strong supportive family, and my husband really helps out. my kids all help out.” despite limited time for self-care due to pandemic-related increased workload, most participants were tenacious about making their own well-being a priority through deliberate activities. several fps used the internet to stream exercise classes, watch videos, and participate in online clubs. one talked enthusiastically about studying a second language: “i started learning italian on duo lingo. [it] kept me sane by doing something completely different.” another shared, “i’m staying really busy with projects around the house.” participating in outdoor activities such as walks with family and/or friends and gardening was also mentioned: “…looking at butterflies…i’m a sun person so i sit in the yard.” similarly, another participant noted, “i try to walk every day. i’m also trying to work on strength, flexibility. [a]side from physical fitness, there’s also a kind of emotional fitness.” other self-care practices included meditation, journaling, sleeping, cooking, housework, walking, praying, reconnecting with old hobbies and trying new things: “trying to develop more of a prayer life because that i think helps me connect why it is i’m doing what i’m doing, why is it that this is all happening.” others discovered that focusing on improving clinical care reduced their feelings of helplessness: “i think just being able to develop a new way of delivering medicine is a coping strategy.” several participants spent time seeking out reliable sources for covid-19 news updates so they could give patients trustworthy information. still others used the pandemic as an opportunity to build on existing programs: “we’re trying to work on actually a whole new health program at our rehab place.” in this way, work itself became a refuge for many of these physicians. fps applied cognitive coping strategies such as acceptance, gratitude, and compartmentalization to regulate negative emotions. many physicians reflected on how their attitudes and coping strategies helped to foster resilience. “i’ve become a lot more emotionally resilient,” said one. some described the value of cultivating acceptance of factors beyond their control, for example: “i’ve had to learn to accept the uncertainty.” several shared their ability to “turn it off” by taking time for themselves. some consciously meditated on gratitude for family and their work: “medicine is a very rewarding, very reinforcing profession. there’s a lot of gratitude that’s expressed [by patients to their physicians].” in addition to behavioral and cognitive coping, participants also appreciated institutional efforts to provide support. physicians working at larger institutions felt more supported compared to physicians working as solo practitioners or in small practices. understandably, community physicians in private practices often felt they had to cope with the pandemic on their own. among those who did feel satisfied with their professional organization’s pandemic response, town halls for listening to employee concerns, providing education and ppe, and offering mental health resources were mentioned as essential in supporting participants to maintain resilience. most participants felt that their institutions supported them by providing information and being transparent about the evolving situation: honestly, in the beginning when they were doing all the feed the front lines and all that. that was amazing. it really showed how much the community supported us as a whole. most agreed their organizations were safeguarding them by doing their best to obtain adequate ppe (although this was not always successful) and promoting their wellbeing through mental health services and accommodations, as one participant explained: “it’s reassuring that we have support from the medical center to try to continue to adapt to the changes we face and the support to adjust our practices.” another commented, “our hospital has done a really good job, especially in the more recent months to secure more ppe for us.” a resident affirmed, “i’ve been well supported in my mental health by my residency program... frequent check-ins [with staff mental health providers].” in some training settings, fp attendings assumed responsibility for providing care to patients with covid-19, resulting in several residents feeling protected by their programs. all these examples show that effective institutional support gave participants the sense they were not alone in fighting the pandemic. service orientation responses to questions about coping and social support helped us understand what enabled these fps to react with resilience. however, it required a deeper perspective to grasp factors contributing to the grit, courage, resolve, and strength of character they exhibited in the face of highly distressing and helplessness-inducing circumstances. fps’ motivations included a moral imperative as participants described an ethical responsibility to continue patient care. this ethical commitment was rooted primarily in the values and principles of their specialty. utilizing a whole-person approach to healthcare enabled these fps to feel prepared to tackle pandemic challenges. a majority emphasized prioritizing a patient centered orientation that ensured continuity and participation in the entire trajectory of covid-19patient care, from outpatient to hospital and home. the following quote illustrates this point well: we are already in the mindset of thinking about population level issues. we’re used to thinking about what happens to patients outside the hospital. i think we’re used to being a little bit more creative when it comes to dealing with case management social work issues. [page 48] [qualitative research in medicine & healthcare 2022; 6:10296] article no nco mm er cia l u se on ly family physicians are trained to think holistically about patients, both when they are hospitalized and when they return to their families and communities. this commitment to continuity is what guarantees that the patient is always placed at the center of care. participants also noted mutual trust and shared decision-making as sustaining fm core principles. fps commented on the importance of adaptability and flexibility: “family physicians are pretty flexible. we’re used to meeting our patients where they are.” listening to patients’ perspectives and fears and the ability to extend empathy, compassion, and understanding to patients who were unable to adhere to recommendations were guiding principles that participants mentioned, for example: to know them as a primary care doctor, it’s great and really rewarding to see people and get to know them over years and take care of them and be able to earn their trust and then give recommendations to improve their health when they’re doing well, when they’re doing poorly. the overarching commitment to patient-centered medicine for all patients proved to be a critical factor in these physicians’ ability to dedicate themselves to continued practice even under very difficult circumstances. physicians were motivated by their determination to provide care especially during times of need. as one doctor said, “i took an oath,” thus emphasizing the sacred nature of their responsibility toward patients. others refocused on their early altruistic motivations for choosing medicine. several physicians pointed out that being an fp was not about becoming wealthy: “most family medicine physicians aren’t doing it for the money. we’re doing it because we want to help.” rather, they felt it was about caring for people when vulnerable: “you share a lot of very personal, very intimate often challenging situations with your patients over the years.” in the words of another participant, “in primary care, you stay together, and you build relationships over time.” duty and feelings of responsibility were powerful drivers: “this is exactly what we signed up for. i cringe when people say we’re doing something heroic.” another demurred, “i’m just doing what i was trained to do.” many emphasized their sense of accountability: “it’s just kind of our duty as physicians to step up to the plate and do what we can.” because of their professional values, these doctors did not hesitate to take part in pandemic response efforts: “i tend to get busy doing what needs to be done.” one resident shared that they were fulfilling a dream and felt privileged to serve their community: if you really enjoy medicine and you really like being there for people, then in a situation like this where people really need you, then it’s just more affirming, it’s challenging, stressful, but it’s also reaffirming, reassuring. another resident expressed a similar sentiment: our hands were overworked, and we had a lot of things to do, but at the same time, that doesn’t mean i’m going to lose my joyfulness. i’m just going to try and be happy. this sense of joy in the practice of family medicine, previously noted in relation to ameliorating burnout, was an important part of their motivation toward service. one physician remarked that it was the “brilliance and resilience of my colleagues” that motivated him to care for patients with covid-19. others noted the benefits of feeling part of a group collectively striving to overcome a dangerous disease: we didn’t sign up for this specific virus necessarily, but we signed up for work that potentially has put us at risk for different, you know, contagious diseases like this, so i’m willing to do the work. such statements suggest that, although cognizant of the enormous stresses under which they were operating, these fps experienced serving their patients and being part of a team as highly meaningful and rewarding. many physicians were inspired by the gratitude of their patients, for instance: “it’s scary to have a lot of fear with being on the front. but i also feel the appreciation that you never did before.” one noted that gratefulness from patients was stronger than ever and kept them going. a slightly different aspect of patient appreciation took this form: “the pandemic gave doctors a sense of importance and increased motivation by feeling valued for their skills.” another stressed the generosity of patients even in such difficult times: “if you keep your focus on your patients, it’s really difficult not to feel rewarded because patients are very giving.” these and similar quotes suggest that, for these physicians, medicine is a calling, the ethical responsibility they felt toward serving others, and patients’ appreciation helped sustain their continued commitment to patient care. resource needs while participants prioritized the influence of their intrinsic values and commitment to service that attracted them to family medicine, they also recognized that to help mitigate burnout, they required additional external resources. recommended resources included enhanced support for frontline clinicians and their patients, for example: “and then even when the tests get turned around, they just haven’t had the resources to contact patients with results.” several participants were concerned [qualitative research in medicine & healthcare 2022; 6:10296] [page 49] article no nco mm er cia l u se on ly about the need for improved resources for patients with low socioeconomic status, as one explained: when that [treatment and testing] is available, without a system to ensure people get access to that. we have some limitations and problems in our [healthcare] system that have been exposed by this. recommendations also emphasized working toward a more comprehensive and equitable healthcare system, such as providing free masks and mental health services. some participants also suggested additional financial and training resources to ensure that all patients have access to telehealth and to accessible, affordable, and reliable testing. in addition, they suggested improvements to reporting and following patients with positive covid-19 results: “better testing, better centralized information, better reporting on the number of cases.” many expressed the need for accurate information about covid-19 and best practices to share with their patients. participants noted how their patients’ care could benefit from additional professional resources: “[we need] resources, materials, and some additional funding to help offset the loss in revenue.” the need for increased financial support for primary care, especially during times of reduced revenues, was on the minds of both academic and community physicians, for example: “a monetary investment in primary care is needed so that you can afford to continue to provide care for patients with chronic medical conditions.” other suggestions included more accessible and timely information for frontline physicians and a secure supply chain of equipment: if i had one resource that had everything that i need to know repository for covid-19 information that would help not just me, but the rest of the healthcare organization period, including the public. another fp expressed her frustration about the lack of ppe: i just think we deserve… how can they not supply us with more ppe? do they even care about our safety if they can’t provide us with the proper…. i just wish they would provide us with more masks. participants also endorsed the need for strong public health leadership and policies—“i think we have really suffered from not having a united voice on that [pandemic response]” —and improved health education for the public: repeated [public health] education [is essential], even for those people who are denying the existence of [this virus]. if you repeat that information to them that this virus is real and this infection is real and can kill. [i’m] just hoping it will be instilled in their mind that this virus is not a joke. some advocated for mandates to promote public compliance with mitigation measures such as masking. beyond public health education, fps recommended stronger science education. one participant, for instance, mentioned school programs for children: i think, down the road, what this tells us is that we need to really bolster scientific education in schools for kids so that they understand the scientific method and that will help them become more flexible mentally in the future. residents requested resources including mental health and other support. some mentioned that they or their peers had sought counseling and would benefit from improved access to mental health services: “yeah, so the mental health counseling. i think that’s the biggest one.” other residents called for hardship benefits and loan forgiveness, for example: “there needs to be more said in terms of whether maybe loan forgiveness or reimbursement in support of telehealth.” still others focused on expanding residency resources to support career progression during a pandemic: “virtual interviewing versus how to even find a job versus the financial education piece on that.” concern regarding future employment was a salient theme: i think especially because there’s this added stress right now that covid has really changed the landscape of the job market or changed a lot of things still even for our graduating class, potentially. and so, there’s a lot of just extra anxiety with that. as demonstrated by this remark and others like it, while fps served their patients with dedication and loyalty, they noted their work could be better supported with additional resources. residents, in particular, called for increased resources, benefits, and assurances about their futures. discussion this study provides an in-depth review of california fps’ experiences and reactions during the first six months of the covid-19 pandemic. fps experienced initial fear, confusion, and vulnerability; subsequently, they demonstrated the grit and resilience necessary to care for patients during tumultuous times. underpinning this response was participants’ sense of moral responsibility toward their patients. the study also identifies various ways in which the healthcare system might better support primary care physicians and patients during future public health disasters. prior research suggests that the stressors clinicians experienced in this study were similar to those reported [page 50] [qualitative research in medicine & healthcare 2022; 6:10296] article no nco mm er cia l u se on ly in a study of nearly 3000 health workers in 60 countries practicing during the covid-19 pandemic.15 challenges identified in this study were also similar to those experienced by health workers during the 2009a/h1n1 pandemic in israel, australia, and england. then, as now, clinicians struggled with ppe shortages, uncertainties in knowledge, conflicting information from multiple sources, and limited communication from the frontlines to authorities.55 challenges unique to the covid-19 pandemic in the us included a high level of politicization and inconsistent public health messages not evidenced in these earlier studies. these differences generated confusion and mistrust of the medical and scientific communities as well as frustration, anger, and disappointment in physicians. as posited by stress and coping theory, physicians in this study experienced extremely stressful circumstances given the threat to their own and their family members’ health prior to the availability of vaccines. during stressful circumstances, it is understandable for overwhelmed physicians to question whether their work is worth the risk, yet we found the opposite. most physicians in this study demonstrated resilience and grit in the face of unexpected challenges. most quickly adjusted to unfamiliar protocols and clinical practices, notably telehealth. most described problem-focused coping (e.g., seeking information, securing ppe, implementing telehealth) and emotion-focused coping strategies (e.g., practicing meditation, acceptance, and gratitude) in response to the stress. these coping mechanisms along with participants’ reports of continued motivation to care for patients and, in most cases, avoid burnout demonstrate how fps built resilience and grit during this time of increased demand on their external and internal resources. this remarkable persistence in caring for patients was rooted in a strong sense of ethics of care45 prevalent among fps. ethics of care theory emphasizes the relational rather than the individual nature of human existence.56 it is notable that fps in this study expressed many concerns that were relational in nature. participants feared for their patients and for their own families. some expressed anger towards the government and some members of the public rooted in a sense that many people no longer seemed to have confidence in the mutual relationship of trust that forms the core of family medicine. even in voicing personal concerns, such as feelings of helplessness and fears about their own health, these fps were aware of the potential negative implications for their patients. every one of these physicians was inspired by core values of family medicine such as cultivating therapeutic relationships with patients, compassionate listening, and shared decision making that can also be understood within an ethics of care framework. these core values assuaged their frustrations and enabled them to continue caring for patients.57 many reported positive feelings of connection and satisfaction from providing meaningful, life-saving services. additionally, they felt that their job duties aligned with strongly held values about providing healthcare for patients in difficult circumstances and times of great need. in a further example of how an ethics of care supported their ongoing work, when participants made suggestions for additional resources, these were primarily directed toward supporting their patients and themselves so that they could continue to provide optimal care, especially for patients in disadvantaged communities. conceptual model as a result of this work, we formulated a conceptual model representing the various patterns and relationships we discovered (figure 1). in this model, the adversity of the covid-19 pandemic was a stressor that could lead to either resilience, post-traumatic growth and grit, and/or moral distress and burnout. negative appraisals, characterized by significant personal and professional concerns and fears, contributed to burnout and moral distress for some fps. however, a majority of fps positively appraised the challenges to focus on problem solving and self-preservation. this required ingenuity, adaptation, restructuring clinical responsibilities, and resilience. fps’ resilience was buoyed by their own values, the values of family medicine, and tangible support from employers, co-workers, families, and friends. triangulation with quantitative study comparing our qualitative findings with the results from our large quantitative survey (in submission) revealed differences and commonalities. one unexpected finding is that interview participants reported less burnout than the subjects in the quantitative survey. this may have been because acknowledging burnout in a face-to-face interview might be more difficult than in an anonymous survey. also, whereas moral distress and burnout were related in the survey results, often the interviewed participants demonstrated high resilience in the face of moral distress, i.e., participants often reported high levels of disappointment and anger and described themselves as engaging in many self-preserving behaviors. we conclude that this finding of low burnout in the face of high moral distress resulted from the ways in which participants had metabolized an ethics of care philosophy into their practice of medicine. as noted, we also found parallels with the quantitative results. for example, women in both the qualitative and quantitative arms tended to mention burnout more frequently than men. further, when comparing the surveys to the interviews, we found that those in both groups demonstrating resilience were more likely to report employer support, self-care, and personal wellness practices. finally, both qualitative and quantitative results identified significant frustrations with lack of ppe. [qualitative research in medicine & healthcare 2022; 6:10296] [page 51] article no nco mm er cia l u se on ly strengths and limitations to the researchers’ knowledge, this is the first study of its kind to directly investigate the personal experiences of fps throughout the state of california by in-depth interviews during the early covid-19 pandemic. as noted, because of california fps’ extensive exposure to patients with covid-19, this one-of-a-kind information should be especially valuable to other pccs and policymakers. the study contributes new knowledge about how these fps’ core values and commitments to the doctor-patient relationship promoted their resilience and motivation to sustain patient care. in addition, the study’s distinctive three-part theoretical foundation (stress and coping theory, resilience theory, and ethics of care theory) provides nuanced insights into relationships among its various themes. in terms of our methodological rigor, we accomplished theoretical triangulation by drawing on three different theoretical models to interpret our results. we also had triangulation of methods in that we were able to compare our qualitative findings with the results of the quantitative arm of the study. finally, we benefitted from researcher triangulation, in that we had individuals with epidemiological, psychological, and medical training involved in the research, as well as researchers at different levels of training, including undergraduate, medical student, resident, and academic faculty. since many of the investigators were affiliated with a department of family medicine they were easily able to establish rapport with the interviewees, thus increasing the likelihood of candor on the other hand, convenience sampling is a limitation of the present study design, given the possibility of sampling bias toward motivated participants possibly impacting internal validity and skewing results toward positive responses. another limitation was that we conducted only a single interview with each participant. out of respect for participants’ overwhelming clinical demands as well as multiple other personal and professional obligations, we decided not to make further demands on their time. for this reason, we did not return transcripts to participants for review, which may have precluded them from modifying, changing, or adding to their initial responses. however, the context of the interviews was informal and expansive, and the question route readily allowed for opportunities to modify or change responses. although only 20 interviews were conducted, we did achieve theoretical saturation of the data in that interviewers judged that no new information or themes were emerging during the final interviews. it is also true that the study was conducted during the first six months of the pandemic. thus, our findings pertain only to this initial phase, and their relevance to other phases of in the pandemic would need to be further studied. for example, as time went on, the pandemic has had an increasingly negative impact on physicians’ well-being.58 a final note is that almost all of our interviewees practiced primarily in outpatient settings, typical of a majority of fps. as such, this study did not explore the experiences of physicians practicing primarily in inpatient settings where patients’ suffering and deaths without family support triggered additional moral distress.59 conclusions this qualitative study describes the challenges, coping strategies and motivations of 20 california fps practicing during the early phase of the covid-19 pandemic. fps will continue to play vital roles in providing access to primary healthcare and caring for patients during the covid19 pandemic. this study demonstrates the dedication, resilience, and grit of fps by serving their patients and communities despite personal risks and professional uncertainties. it identifies important resources to promote well-being and job satisfaction at times of intense stress and job strain. furthermore, this study underscores the importance of supportive working environments to ensure a physically and mentally healthy frontline workforce during future public health emergencies. we hope these findings will inform future training and practice. future research, both qualitative and quantitative, can build on this foundation, continuing to pursue questions of how frontline physicians cope with the extraordinary stressors of pandemic conditions and what sustains them ethically in this essential work. references 1. webeck e. coronavirus: california exits september better than where it started. the mercury news. [accessed: 1 november 2021]. available from: mercurynews.com/2020/ 10/01/coronavirus-california-exits-september-better-thanwhere-it-started/ 2. haldane v, zhang z, abbas rf, et al. national primary care responses to covid-19: a rapid review of the literature. bmj open 2020;10:e041622. 3. barkley s, starfield b, shi l, macinko j. the contribution of primary care to health systems and health. in: family medicine: the classic papers. london: crc press 2016: 191-239. 4. wilkinson e, jett a, petterson s, et al. primary care’s historic role in vaccination and potential role in covid-19 immunization programs. ann fam med 2021;19:351-5. 5. eizenberg p. the general practice experience of the swine flu epidemic in victoria – lessons from the front line. med j aust 2009;191:151-3 6. kearon j, risdon c. the role of primary care in a pandemic: reflections during the covid-19 pandemic in canada. j prim care community health 2020;11:2150132720962871. 7. rust g, melbourne m, truman bi, et al. role of the primary care safety net in pandemic influenza. am j public health 2009;99:316-23. 8. sáenz r, garcia ma. the disproportionate impact of covid-19 on older latino mortality: the rapidly diminishing latino paradox. j gerontol b psychol sci soc sci 2021;76:81-7. 9. hawkins rb, charles ej, mehaffey jh. socio-economic [page 52] [qualitative research in medicine & healthcare 2022; 6:10296] article no nco mm er cia l u se on ly status and covid-19–related cases and fatalities. public health 2020;189:129-34. 10. thebault r. california, latest coronavirus epicenter, sets nationwide record for new cases: ‘the worst is still before us’. the washington post. accessed: 8 august 2022. available from: https://www.washingtonpost.com/nation/2020/12/16/ california-coronavirus-hospitalizations/ 11. goodyear-smith f, kinder k, eden ar, et al. primary care perspectives on pandemic politics. glob public health 2021;16:1304-19. 12. khullar d. building trust in health care–why, where, and how. jama 2019;322:507-9. 13. mello mm, greene ja, sharfstein jm. attacks on public health officials during covid-19. jama 2020;324:741-2. 14. medscape. in memoriam: healthcare workers who have died of covid-19. accessed: 1 november 2021. available from: medscape.com/viewarticle/927976 15. morgantini la, naha u, wang h, et al. factors contributing to healthcare professional burnout during the covid-19 pandemic: a rapid turnaround global survey. plos one 2020;15:1-11. 16. world health organization. burn-out an “occupational phenomenon”: international classification of diseases. accessed 1 november 2021. available from: who.int/news/ item/28-05-2019-burn-out-an-occupational-phenomenon-international-classification-of-diseases/ 17. kane l. medscape. medscape national physician burnout & suicide report 2020: the generational divide. accessed: 1 november 2021. available from: medscape.com/ slideshow/2020-lifestyle-burnout-6012460?uac=25253 mr&faf=1&sso=true&impid=2269807&src=wnl_physrep_200207_burnout2020_rm_int#1 18. williams es, manwell lb, konrad tr, linzer m. the relationship of organizational culture, stress, satisfaction, and burnout with physician-reported error and suboptimal patient care: results from the memo study. health care manage rev 2007;32:203-12. 19. jameton a. nursing practice: the ethical issues. englewood cliffs, nj: prentice-hall, 1984. 20. morley g, ives j, bradbury-jones c, irvine f. what is ‘moral distress’? 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[page 54] [qualitative research in medicine & healthcare 2022; 6:10296] article no nco mm er cia l u se on ly layout 1 introduction deaths from unintentional drug overdoses in australia have almost doubled from 981 in 2001 to 1,654 in 2022 (penington institute, 2022). compelling in number alone, this statistic does not convey the emotional pain that family and friends are left with or stigma due to the nature of their loved one’s death (daley et al., 2018). adding to potential emotional pain is the possibility that death could have been prevented by administration of naloxone—an opioid antagonist that has a high affinity for opioid receptors, thus temporarily blocking the effects of opioids. substantial evidence supports the provision of naloxone for opioid toxicity management, and therefore, naloxone has been used to treat opioid overdose for more than thirty years (campbell, 2019; world health organization, 2014). “take-home naloxone” (thn) is a term used to refer to the provision of naloxone to anyone potentially likely to witness an opioid overdose in the community. thn programs have been evidenced to reduce overdose mortality in program participants and the wider community (mcdonald & strang, 2016; strang et al., 2019). thn programs usually include overdose education detailing prevention strategies, how to identify and respond to opioid overdose including seeking help, and how to administer naloxone “it can save your life, that’s all i know,” barriers and facilitators for engagement in take-home naloxone for people receiving opioid substitution treatment in regional australia: an explorative study isabella natale,1 craig harvey,1 pene wood,2 karen anderson2 1drugs and alcohol services, barwon health, geelong; 2la trobe university, bendigo, australia abstract engagement in take-home naloxone (thn) programs by people receiving opioid substitution treatment (ost) in australia is low despite methadone being a significant contributor to opioid overdose deaths. our aim was to explore barriers and facilitators for ost patients to engage in thn. we used a descriptive qualitative design with thematic analysis to gain insight into naloxone uptake by people engaged in an ost program in regional australia. eleven participants were interviewed; eight had previously engaged with thn. barriers to thn included limited knowledge and understanding, lack of information, and not personally experiencing an overdose. facilitators included having a traumatic experience of overdose, knowledge and understanding of thn and overdose, empowerment in carrying naloxone, and expanding thn programs. support for the expansion of thn programs is desired among participants, and widespread peer distribution is understood to be the key to success. this study found that prior traumatic experience of overdose facilitates acceptance of thn, and being offered thn was the most important factor in engagement. less clear is how to engage people who lack a traumatic overdose experience. correspondence: isabella natale, drugs and alcohol service, barwon health, po box 281, geelong 3220, australia. tel.: +61.426.193.972 fax: +61.3.4215.8793. e-mail: isabella.natale@barwonhealth.org.au key words: methadone; take-home naloxone; overdose; opioiduse disorders; buprenorphine. conflict of interest: the authors declare no potential conflict of interest, and all authors confirm accuracy. ethics approval and consent to participate: written informed consent was obtained prior to all interviews. ethics approval was obtained from the research ethics, governance & integrity unit (reference 19.123) at barwon health and the university human ethics committee at la trobe university. patient consent for publication: written informed consent was obtained from a legally authorized representative(s) for anonymized patient information to be published in this article. availability of data and materials: all data generated or analyzed during this study are included in this published article. acknowledgements: the authors acknowledge the participants for their time and willingness to share often traumatic experiences for the purposes of this study. received: 12 september 2022. accepted: 7 may 2023. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2023 licensee pagepress, italy qualitative research in medicine & healthcare 2023; 7:10868 doi:10.4081/qrmh.2023.10868 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. [page 34] [qualitative research in medicine & healthcare 2023; 7:10868] qualitative research in medicine & healthcare 2023; volume 7:10868 no nco mm er cia l u se on ly (williams et al., 2014). these programs are targeted towards people who are likely to witness an opioid overdose in the community and are well-placed to intervene (strang et al., 2019). naloxone was first made available for use outside the hospital setting in italy in 1991 in response to a heroin epidemic (campbell, 2019). in the late 1990s, naloxone provision began in the united states and in the early 2000s, programs began in the united kingdom (campbell, 2019). in 2010, scotland became the first jurisdiction to implement a national thn program (mcauley et al., 2012), and in 2014, the world health organization endorsed widespread availability of naloxone for community management of opioid overdose (world health organization, 2014). thn programs commenced in australia in 2012 in the australian capital territory and now operate in all australian jurisdictions (dwyer et al., 2018). currently, three different formulations of naloxone are available in australia: an intranasal spray and two intramuscular injection options—one pre-filled and the other requiring additional equipment to utilize. naloxone has been available via gp prescription—subsidized on the pharmaceutical benefits scheme since 2012—and for people to purchase over the counter in pharmacies since 2017 (dwyer et al., 2018). as of july 2022, all pharmacies in australia have been able to access federal funding to dispense naloxone for free to customers, and changes to legislation in the state of victoria will soon enable people other than pharmacists, such as harm reduction workers, to supply naloxone (australian government department of health and aged care, 2022). prior to july 2022 and despite product and program availability, economical and logistical barriers to accessing naloxone in australia were evident (dwyer et al., 2018). for people likely to be present at a drug overdose, the cost to purchase naloxone over the counter, fear of experiencing stigma, and future discriminatory consequences if naloxone was requested were prohibitive (green et al., 2017). patients prescribed opioid substitution treatment (ost) (methadone and buprenorphine) contribute to overdose deaths; while their medication alone does not routinely cause the death, it often plays a significant part (penington institute, 2022). this is contrary to public opinion that the methadone implicated in overdose deaths has been diverted and highlights the current relevance and need for thn programs for patients on ost (jamieson, 2020). in australia, the rate of accidental deaths involving methadone more than doubled from 2001 to 2020 (penington institute, 2022). times of increased risk of overdose are at commencement of treatment, when take-away doses are commenced, and at cessation of treatment (walley et al., 2013). risks are present at commencement as dosage has not been stabilised and patients are more likely to be continuing use of illicit or prescribed opioids (walley et al., 2013). take-away doses increase the availability of the medication, and at cessation, tolerance is often significantly reduced. despite ost patients demonstrably making effort to reduce or cease opioid use, they continue to have high rates of overdose risk factors such as polysubstance use and relapse leading to increased exposure to overdose events (walley et al., 2013). major barriers to obtaining naloxone in australia have been identified as out-of-pocket cost to the consumer and difficulties navigating complex health systems (dwyer et al., 2018) similar to experience in the united states (deering et al., 2018). the cost of naloxone available over the counter in australian pharmacies until july 2022 was prohibitive to the person at risk of overdose (pricolo & nielsen, 2018). to obtain naloxone at a subsidized price through the pharmaceutical benefits scheme, people must first obtain a prescription from their gp and then have that prescription filled at a pharmacy. the stigma and discrimination from such health services and health professionals (fomiatti et al., 2022; strang et al., 2019; van boekel et al., 2013) is compounded by the often inaccurate perceived notion of wrongdoing by requesting naloxone, adding another significant barrier to obtaining thn from a pharmacist. additionally, people receiving methadone view concurrent use of opioids, benzodiazepines, and alcohol as low risk, despite evidence that this is particularly fatal (deering et al., 2018). government funding of thn programs in victoria began free provision of naloxone in 2018, thus overcoming the financial barrier. as part of a strategy to increase naloxone distribution, naloxone was offered to all ost patients attending medical appointments at a drug and alcohol service in regional victoria. experienced reception staff offered free provision that would include a brief training to be carried out by experienced harm-reduction staff while patients waited to see their gp, thereby overcoming both financial and logistical barriers. despite this, many ost patients declined take-home naloxone, in contrast to the literature, suggesting that other barriers remain (deering et al., 2018; dwyer et al., 2018). this qualitative study, therefore, explores persistent potential barriers and facilitators to ost patients. materials and methods we used a descriptive qualitative design (sandelowski, 2010) with semi-structured interviews in a regional town in victoria, australia. we recruited participants from a community-based drug and alcohol service that offers access to ost prescribing gps and a take-home naloxone program among other related harm reduction services. this service is the largest service for people accessing ost in the region. eleven semi-structured interviews (30-90 minutes in length) were conducted by the lead researcher (in) and audio recorded. the initial six interviews were conducted face-to-face during february and march 2020, followed by five telephone interviews in july and august 2020, to com [qualitative research in medicine & healthcare 2023; 7:10868] [page 35] article no nco mm er cia l u se on ly ply with physical distancing restrictions in place in victoria at the time due to covid-19. adults over the age of 18 who were being prescribed ost at the time of interview and had been offered thn in the past were purposively recruited (lavrakas, 2008). prospective participants who were unable to participate in an interview face-to-face or via telehealth were excluded. all staff at the service were provided with information about the study prior to advertising, posters being placed in waiting areas of the site. prospective participants were asked to contact the lead researcher to confirm eligibility and discuss interview arrangements. written informed consent was obtained prior to all interviews. ethics approval was obtained from the research ethics, governance & integrity unit (reference 19.123) at barwon health and the university human ethics committee at la trobe university. the interview guide (supplementary materials, appendix 1) was developed for this study based on the literature (deering et al., 2018; dietze, stare, et al., 2018) and reviewed by experienced clinicians working with ost patients and thn programs. the interview guide was used to explore narratives from participants pertaining to their drug use history leading to ost, their knowledge and experience of overdose, and particularly their attitudes towards takehome naloxone programs and any experience they had with naloxone. this method enabled us to utilize open-ended questions, inviting the participants to give a more detailed response and allowed for further questioning if deemed relevant to the study. recruitment continued until there was consistency in the concepts and insights into people’s experience of naloxone and opioid overdose emerging without presentation of new themes (fusch & ness, 2015). data analysis data were analysed utilizing thematic analysis (sandelowski, 2010). this is a systematic approach that involves identifying themes or patterns of cultural meaning: coding and classifying data and interpreting the resulting thematic structures. interviews were transcribed verbatim, and data were then de-identified, coded, and analysed. initial data were coded separately by all researchers and compared for consistency, after which all remaining data were coded by two researchers (in and ch). codes were sorted into themes which all researchers met to discuss and compare. commonalities, relationships, context, and patterns were considered before themes were refined (liamputtong, 2009). results eight males and three females took part in this study, and the median age range was 36-45 years (table 1). of the 11 participants, 10 were prescribed methadone, and eight had engaged with thn prior to the study. the gender, age, and ost medication type characteristics matched national data for ost patients in australia in 2019 (australian institute of health and welfare, 2020). three participants had casual work as peer needle and syringe workers; however, for the most part, participants’ income consisted of government support. all had access to housing, and education levels varied from degree qualifications to leaving school prior to year 10. themes emerging from interviews were grouped into barriers to engaging with thn and facilitators of engaging with thn. barriers to engaging with thn were limited knowledge and understanding of thn, lack of information on thn from gps and pharmacists, not personally experiencing an overdose, and using drugs alone. facilitators that emerged included having a traumatic experience of overdose, knowledge and understanding of thn and overdose, the belief that having thn is empowering, and expanding thn programs. each of these themes is discussed below, and the words of the participants are used to illustrate the themes reported. pseudonyms have been used throughout. in general, all participants deemed accessing thn as [page 36] [qualitative research in medicine & healthcare 2023; 7:10868] article table 1. participant characteristics. gender age ost accepted thn participant 1 male >60 methadone yes participant 2 male 46-60 buprenorphine/naloxone yes participant 3 male 36-45 methadone yes participant 4 male 36-45 methadone yes participant 5 male 26-35 methadone yes participant 6 female 36-45 methadone yes participant 7 female 46-60 methadone yes participant 8 male 36-45 methadone no participant 9 male 36-45 methadone no participant 10 female 36-45 methadone no participant 11 male 36-45 methadone yes ost, opioid substitution treatment; thn, take-home naloxone. no nco mm er cia l u se on ly easy, and not being able to obtain naloxone did not contribute to anyone’s decision to accept naloxone or not. cost or logistical issues were not raised by any participants as contributing factors; therefore, access was not identified as contributing to barriers or to facilitators. theme 1: barriers to engaging with thn several barriers to engaging with thn were identified by participants; these included a lack of understanding about thn and the risk of overdose, not personally experiencing an overdose, and using drugs alone. limited knowledge and understanding of thn participants were asked about their understanding of thn including what it is used for, who they think should use it, and why and how it can be accessed. among participants who had not engaged with take-home naloxone, understanding that naloxone reversed an overdose and that participants could access it was all that was known. for example, william said, “naloxone, i know you can just give it to them, or you know it all depends on the person using…. you give it to them, and they’ll wake up from an overdose.” similarly, carol explained “it can save your life, that’s all i know” and paul agreed with, “no, i wouldn’t know. i wouldn’t even know what it looked like.” lack of information on thn from gps and pharmacists when asked if their ost prescriber or a pharmacist had ever discussed thn with them, only one participant reported that their gp discussed take-home naloxone with them; others voiced a desire for this to occur. for instance, carol said, “he doesn’t talk to me about that kind of stuff…. it would actually be good; it would actually feel like he cares.” this tendency was explored further with participants who had been co-prescribed central nervous system depressant medications that would increase their risk of toxicity and overdose. in such cases, naloxone was still not discussed or offered by their doctors—“nope…. nah never, not one doctor,” as william succinctly observed. william interpreted this as supporting his view at the time that he was not at risk of overdose and did not need thn. this view was then reinforced by dispensing pharmacists not discussing thn either: “nope, never. not one, not any chemist.” it wasn’t until later when he was offered thn by a harm reduction worker that he was informed of the potential overdose risks. this pattern was common across all participants except for carol who said it felt good to be asked about naloxone by the chemist: “the chemist was asking people.… it was good to know it was out there for an option, if needed.” a lack of education on overdose risks and thn from gps and pharmacists could have been a contributing factor to the limited knowledge participants had on thn and could explain why their understanding was limited to the risk of overdose. not personally experiencing an overdose all participants who declined thn had no personal experience of an overdose and even indicated that thn was for people who had overdosed previously, highlighting their limited understanding of thn, as evidenced by paul: “people that are, you know…. i don’t, i don’t know. like to be honest. i don’t know people that are, have, have overdosed before? you know, at least once or twice.” by assuming that thn was for people who had overdosed previously, participants excluded themselves from this group. participants who had not engaged with thn could not explain why they had never had an overdose themselves and did not have strategies to reduce their own overdose risk, and some, such as paul, believed that the risk to themselves was low or non-existent: “[i]t’s not going to happen to me.” when specifically asked what strategies were employed to reduce their overdose risk, tim also downplayed the risk: “i don’t know. nothing i suppose.” we interpreted that this denial of overdose risk, combined with not employing any risk reduction strategies, led participants to determine that thn was not relevant to them. using drugs alone using drugs alone was a barrier to engaging with thn. participants who used alone and had not engaged with thn reasoned that if a person were alone and experiencing an overdose, then thn was not relevant, as they could not administer it to themselves: “[i]f you’re by yourself it’s not going to save anyone’s life.” comments like this implied a fatalistic view of the risks of using drugs alone. theme 2: facilitators promoting engagement with thn traumatic experience of overdose all participants who had engaged with thn had experienced a traumatic overdose event, and all had personally overdosed at least once. also, many had experienced an overdose fatality or near miss of someone they identified as close to them, and that affected them deeply, as demonstrated by ralph: “[m]y friends who i started using heroin with. there was seven of us, and there’s only two of us left. so the rest are dead.” participants linked these experiences as informing their decision to engage with thn, as described by terry and mark, respectively: “because of her, i automatically, yeah, wanted it,” and “[j]ust my experiences in the past and stuff like that to know that i could’ve like done something to change the, the defects, was a no brainer”. for these participants, it appears that traumatic overdose events pre-determined their engagement with thn when the offer was made. [qualitative research in medicine & healthcare 2023; 7:10868] [page 37] article no nco mm er cia l u se on ly knowledge and understanding of thn and overdose participants who had accepted thn generally had good knowledge of what naloxone is, its intended use, and the concept of thn programs. attitudes towards being able to access it themselves were positive, and three participants in this group reported having administered naloxone. mark stated, “just basically, that it reverses the effects of the, of the opiates,” and william concurred with, “you give it to them, and they’ll wake up from an overdose.” the effect of naloxone was thus described simply, and feelings of confidence in naloxone and competence to respond to an overdose were evident. it is not clear whether this knowledge facilitated engagement with thn programs or was a result of having accepted thn previously. additionally, this same group gave detailed explanations as to why people overdose and outlined various risk reduction strategies utilized to prevent overdoses from occurring. common strategies included using their drugs in multiple, smaller amounts, not using alone, and being aware of their tolerance. for example, russell explained that “two holes in the arm is better than one in the ground,” and william said, “you know i always, i only do two points at that time. you know, i know me sort of thing, me tolerance. do you know what i mean like?” similar to knowledge of thn, it is not clear whether utilizing risk reduction strategies facilitated engagement with thn programs or was a result of the engagement. having thn is empowering participants who had used their thn to reverse opioid overdoses described feelings of empowerment, control, and gratitude at being able to take action to prevent harm. mark, for instance, likened it to being a paramedic, and others expressed relief at having the tools and knowledge to act in potentially life-threatening situations: “[i]t’s yeah, just amazing to, to be able to have that kind of control and, yeah, ability.” and william reflected on how it is different now with access to thn compared to fifteen years ago: at least you can bring them back to life now, you know what i mean. like, we couldn’t do that. you had to get the ambulance to do it. and then nine out of ten, they’re going to die because the time the ambulance got there it was too late. as mark and william’s comments reveal, having access to naloxone and being able to administer it with confidence enables ost patients to feel empowered. expanding thn programs all participants were supportive of thn programs regardless of whether they had used thn. suggestions to expand thn distribution included peer distribution, targeting drug dealers, making it compulsory via needle syringe programs, and including thn kits in syringe vending machines, as demonstrated by sandra and tim respectively: “i think drug dealers should have it” and “yeah, they should maybe hand it out with every kit pack…. compulsory, put it in their pack. make it that they don’t it get it unless they take it home.” furthermore, all participants—regardless of whether they had or had not engaged with thn—supported peer distribution of thn and reported that it was already happening informally. for example, sandra acknowledged that some people were still not willing to engage with community thn programs, noting that “people are scared of people who have authority.” and ralph suggested that peer distribution could reach this group of people: “[w]e’ve been able to get ourselves, not just ourselves to have the naloxone, but other people, who come in here and wouldn’t engage with, with staff.” through comments such as these, participants reflected about how they and other peers have a role in distributing thn to people who are not being reached by thn programs and are potentially at high risk of overdose, suggesting that peer distribution facilitates access to thn. distribution via peers and syringe vending machines were suggested as ways to reduce barriers for people not wanting to engage with thn program staff. the benefits of thn and importance of ensuring access to those who needed it were voiced by all participants. discussion in this study, significant barriers existed for ost patients deciding whether to accept thn such as limited knowledge and understanding, not experiencing an overdose themselves, and using alone. the experience of a traumatic overdose, however, was a facilitator to engaging with thn, and naloxone need only be offered to such participants to facilitate engagement. participants clearly desired the expansion of thn programs and viewed widespread peer distribution as the key to success. consistent with these findings, deering et al. (2018) report that opioid users who do not engage with thn programs have poor knowledge and understanding of overdose and naloxone (deering et al., 2018), and this has been identified as an area for improvement (dietze, stare, et al., 2018). findings of this study support the importance of improving knowledge of overdose and naloxone among this population and thereby decreasing barriers to accessing thn. some participants said that their gp and/or pharmacist had never discussed thn with them, strengthening selfperceptions regarding low risk of overdose. this is also a missed opportunity for increasing awareness and availability of thn. despite barriers such as workflow logistics and costs related to limited time (strang et al., 2019), evidence presented here further supports the belief that gps should co-prescribe naloxone with opioids (see also, strang & mcdonald, 2016) and that pharmacists dispense [page 38] [qualitative research in medicine & healthcare 2023; 7:10868] article no nco mm er cia l u se on ly naloxone with opioids (see also, choremis et al., 2019). in australia, work is progressing in determining and addressing barriers for pharmacists (nielsen et al., 2021; strang et al., 2019; van boekel et al., 2013); however further research needs to determine barriers for gps in australia, particularly in rural settings. these findings further indicate that never having experienced an overdose personally contribute to the ambivalence pertaining to perception of one’s own risk and play a role in participants deciding not to accept thn, as did using opioids alone. this has not been identified in the literature previously. participants were focused using naloxone on themselves rather than the thought of using it on someone else. this finding has implications for overdose education and thn program delivery to ensure accurate understanding of the relevance of naloxone, thereby enabling people to make informed choices. the data clearly demonstrate that a traumatic overdose experience (of oneself or witnessed) preclude engagement with thn. for the population represented in this study, it is imperative that naloxone is put in their hands, as experience of an overdose has been identified as a strong predictor of subsequent overdose (boyes, 1994). in addition to preventing harm, this will increase knowledge and understanding of naloxone, overdose risk factors, and risk reduction strategies, as demonstrated in this study and others (dietze, draper, et al., 2018; lintzeris et al., 2020). additionally, having thn may have an empowering effect (see also, mcauley et al., 2018; wagner et al., 2014). a challenge remaining is how improved knowledge regarding both overdose and the use of naloxone can be achieved among people who do not engage in such programs and is an area for further research. based upon this research, ost patients desire an expansion of thn programs regardless of whether they personally choose to accept it, and peer distribution will contribute to reaching people who are not willing or able to engage with non-peer employees of thn programs (see also, lenton et al., 2015; nelson et al., 2016; olsen et al., 2015). this pattern emphasizes the unique position peers have within their community and the additional credibility and trustworthiness conferred on them by patients when talking about overdose. recent changes to legislation in victoria (foley, 2020) will enable this practice on a much larger scale than exists as of this writing. limitations to this study include a small number of participants in one regional victorian location only. characteristics of the participants in this study were similar to the population of ost patients in australia; however, further research with a larger sample would be necessary to confer transferability of findings to other contexts, situations, and times (australian institute of health and welfare, 2020). further, views sought were on perceptions of risk as opposed to actual practices, and precluding overdose risk factors outside opioid using behaviours—such as smoking, renal function, alcohol intake, and other relevant co-morbidities—were not explored. finally, the number of participants who did not accept thn was small and may not be representative of the views of all ost patients who do not accept thn. conclusions this study found that prior traumatic experience of overdose amongst ost patients facilitates acceptance of thn. for this group, the relevance of thn programs was clear, and being offered thn was the most important factor in their engagement. less clear is how to engage people who have not had a traumatic experience because access to and the offer of thn was not enough to confer acceptance of naloxone. barriers identified, such as poor knowledge and denial of one’s own risk, warrant further investigation for implications about overdose prevention and thn program implementation. expansion of peer distribution of thn in australia is supported by these findings; however, we suggest that to do this successfully, peer workers must be recognized, remunerated, and supported equitably in the workforce. while this study has sought to develop greater understanding into the reasons why ost patients accept thn or not, “thn is not a panacea for overdose. it is a last resort for those on the brink” (mcauley et al., 2018). thn programs only address one part of the prevention and response to opioid overdose and should be seen in this context. there is still much work to do to address the broader social, environmental, and legislative issues that overdose occurs within. references australian government department of health and aged care. 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(2014). community management of opioid overdose. available from_ https://apps.who.int/iris/bitstream/handle/10665/137462/?sequence=1 [page 40] [qualitative research in medicine & healthcare 2023; 7:10868] article no nco mm er cia l u se on ly layout 1 introduction the covid-19 pandemic quickly went from a “mysterious coronavirus” in wuhan, china to an international emergency (world health organization [who], 2020). soon after u.s. president donald trump issued a travel ban on march 13, 2020, california became the first state to issue stay-at-home orders (ajmc staff, 2021). initially, federal officials told the american people to not wear masks in what is now understood as an effort to protect the supply chain of personal protective equipment for healthcare workers (jankowicz, 2020; jingnan et al., 2020; yan, 2020). that official recommendation, despite public resistance from the president himself, changed for everyone to start wearing masks: surgical, cloth, or otherwise. confusion, miscommunication, and debate regarding the benefits of wearing masks lasted throughout the duration of the pandemic (jankowicz, 2020; jingnan et al., 2020; yan, 2020). during the execution of this project, in may 2022, for example, the primary author traveled through los angeles international airport. at the time, masks were no longer required in transportation facilities or aircraft at the local, state, or federal level; however, the airport had many signs, electronic displays, and other inyoung latina college students’ perspectives on mask-wearing post lifting of mask mandates thomas a. clobes,1 heather craig alonge2 1california state university channel islands, camarillo, california; 2walden university, minneapolis, minnesota, usa abstract confusion, miscommunication, and debate regarding the benefits of wearing masks, social distancing, and stay-at-home orders ensued for much of the covid-19 pandemic. without a consistent message from the government, doubt regarding masks’ effectiveness in preventing the spread of covid-19 became common and led to an anti-masking effort and resistance to covid-19 protocols. this qualitative study used thematic analysis to understand experiences of young latina college students during the pandemic and how these experiences contributed to their decisions to continue following covid-19 protocols after the lifting of relevant restrictions. twenty-two latina college students were interviewed, and interview transcripts were analyzed to identify themes. four themes emerged: i) disinformation and mistrust, ii) economic impacts, iii) emotional impacts, and iv) maintaining health. thematic analysis of in-depth interviews allowed for a deeper understanding of health-seeking behaviors of latina college students. inconsistent messaging from public health officials during the pandemic contributed to confusion and resistance to the various mandates among participants—the majority of whom, as of this writing (june 2022), have chosen to continue to wear masks and follow other protocols despite public health and university officials lifting mask mandates. correspondence: thomas a. clobes, california state university channel islands, one university drive, camarillo, ca 93012, usa. tel.: 805.665.3765 e-mail: thomas.clobes@csuci.edu key words: covid-19; pandemic; masks; mask-wearing behaviors; latina. contributions: tac devised the conception of this project, worked on the design with hca, completed the data collection, and drafted and approved the final manuscript. hca handled design and methodological matters and data analysis. she also contributed significantly to the draft of the manuscript and provided her approval of this draft. both authors agree to be held accountable for all aspects of the work. conflict of interest: the authors declare no conflict of interest. ethics approval and consent to participate: permission to conduct this study was received from the institutional review board at california state university channel islands (io5612) and appropriate administrative and operational authorities. consent was treated as an informed, ongoing, and evolving process. permission to record the session was obtained from each participant. availability of data and materials: all interviews were de-identified and securely stored. to comply with irb requirements and protect the confidentiality of the participants, interviews from this study are not being made publicly available. received: 3 september 2022. accepted: 23 february 2023. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2023 licensee pagepress, italy qualitative research in medicine & healthcare 2023; 7:10837 doi:10.4081/qrmh.2023.10837 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. [page 24] [qualitative research in medicine & healthcare 2023; 7:10837] qualitative research in medicine & healthcare 2023; volume 7:10837 no nco mm er cia l u se on ly structions informing travelers that masks were required. thus, travelers who researched whether a mask was required before arriving at the airport were greeted with conflicting messaging prominently displayed throughout the facility. inconsistent messaging from public health officials, coupled with a lack of research validating the use of cloth masks, was indicative of the lack of appropriate pandemic planning in the u.s. (centers for disease control and prevention [cdc], 2022a; contreras, 2020; howard et al., 2021). without a consistent message from the government, doubt regarding mask effectiveness in preventing the spread of covid-19 became common; an anti-masking effort commenced and spilled over to attitudes toward other pandemic protocols (howard et al., 2021; romer & jamieson, 2020; utych, 2021). at the beginning of the pandemic, higher education institutions sent their students home, transitioned to virtual instruction, and closed their campuses (davidson college, 2020; national conference of state legislators, 2020). most colleges and universities hosted nearly all of their classes virtually through the 2020-2021 academic year (davidson college, 2020). when many students returned to in-person instruction on their campuses throughout the country in the fall of 2021, most were required to comply with vaccination and mask-wearing guidelines or undergo regular covid-19 testing (the california state university, 2021). among latina college students, the pandemic brought additional concerns beyond the transmission of covid-19 and related protocols. latino households are more likely to have adults working in farming, an essential industry, leaving increased household and childcare responsibilities to latinas (covarrubias et al., 2019; mares, 2020; "the plight of essential workers," 2020; quandt et al., 2020). latino families also are more likely to work in restaurants and other service industries—areas that were especially impacted by stay-at-home orders during the pandemic (allan et al., 2016; fairlie, 2020; kantamneni, 2020). additionally, people of latino descent are more likely to distrust healthcare professionals and the healthcare system as a whole (harrington et al., 2021). these factors contributed to additional stress and challenges among latina students’ academic lives (clobes & alonge, 2021). by may 2022, more than two years from the beginning of the pandemic, many universities and public health entities had lifted their mask mandates (california all, 2022). this project was inspired by the first author’s observations in his undergraduate courses that nearly all non-latina students immediately stopped wearing masks when the university no longer required it, but most latina students continued to wear them. throughout the pandemic, there have been variations in mask-wearing practices among different races and ethnicities (davis et al., 2021), but there has not been any qualitative investigation in understanding the health-seeking behaviors of young, latina college students and the reasons behind their choices to follow or not follow covid protocols. this qualitative study sought to understand experiences of young, latina college students during the pandemic and how these experiences contributed to their decisions to continue wearing masks, socially distance in public, and avoid group settings after the lifting of relevant restrictions. materials and methods study context this study was conducted at a western state university in may 2022. the university is an officially designated hispanic serving institution with 56% of the population identifying as hispanic and 66% as female. the university is classified as a small institution with a student population under 6,500. of the student population, 62% are first-generation college students, and 79% receive financial aid. study participants a purposive sample of twenty-two latina students (ages 18 to 30) was interviewed for this study (davis, et al., 2021). students in the sample included those who were still wearing masks as well as those who had discontinued doing so. participants were recruited from a variety of undergraduate courses, both lower and upper division, by the first author who requested colleagues to post an announcement about the opportunity in their learning management system. participants were offered the choice of extra credit in their courses (not to exceed 2.5% of course point total) or a $20 starbucks gift card for taking part in 60-minute, semi-structured interviews. study procedures a semi-structured interview approach was used to collect the data. open-ended questions were designed by both authors who have professional healthcare experience (appendix 1). interviews were completed and recorded via zoom by the first author. open-ended questions were asked of all participants; follow-up questions were also asked, individualized per each respondent’s answers to the predesigned questions. interviews were transcribed verbatim utilizing zoom’s close captioning feature and reviewed by both authors while listening to the recorded interviews. the first author also took notes during the interview. interviews were continued until thematic saturation was achieved (guest et al., 2006). data analysis transcripts were analyzed using thematic analysis as described by braun and clarke (2012). this process consisted of reviewing the transcripts and developing initial [qualitative research in medicine & healthcare 2023; 7:10837] [page 25] article no nco mm er cia l u se on ly codes to mark any elements that were relevant to the research questions. codes were refined in an iterative process, involving discussion between both study authors before being grouped into preliminary themes. these themes were then evaluated in light of the original dataset and initial codes, resulting in some themes being altered, amalgamated, or eliminated. finally, salient themes were named based on relationships and patterns of the codes (figure 1). to verify the data, the second author conducted the data analysis, and the first author confirmed the thematic findings by reviewing the transcripts, notes, and codes (lincoln & guba, 1990). when discrepancy occurred in identification of themes, both authors reviewed the data again until consensus was reached. ethical considerations permission to conduct this study was received from the institutional review board at california state university channel islands (io5612) and appropriate administrative and operational authorities. consent was treated as an informed, ongoing, and evolving process. before the interviews, participants were provided a written informed consent form for the study, and any questions were answered before the consent form was electronically signed. participants were informed that the questions were of a personal nature and could provoke an emotional response; they were notified of their right to discontinue the interview at any point if they became uncomfortable. interviews were held virtually via zoom at a time chosen by the participant, and permission to record the session was obtained from each participant. all interviews were deidentified and securely stored. to comply with irb requirements and protect the confidentiality of the participants, interviews from this study are not being made publicly available. results socio-demographic information all 22 participants identified their gender as female. detailed descriptive accounts of interviewees’ beliefs, views, and health behaviors related to covid-19 were collected, with a focus on eliciting lay, causal explanations for the virus as well as the interviewees’ behaviors in mitigating or protecting against perceived risks with regard to recommended protocols. socio-demographic information of the study participants is presented in appendix 2. as noted above, participants were all latina college students. five participants were employed full-time, 14 were employed part-time, and three were unemployed. the mean household income of respondents who knew their household income (15 out of 23) was $40,000; the cost of living in the university area is 34.9% higher than the national average (bankrate, 2022). none of the respondents were married. one participant had children. most of the participants identified as registered democrats; two participants said that they were registered republicans, one who was a registered independent, and one who was not registered to vote. most participants were catholic, with two not being religious, one leaning toward christian, and one identifying as christian. each participant was fully vaccinated, which was a requirement to attend the university. at the time of the interviews, 17 of the 22 participants revealed that they continue to wear the masks when in public settings, including when attending classes on campus. themes four themes emerged from the interview results (figure 1): i) disinformation and mistrust, ii) economic impacts, iii) emotional impacts, and iv) maintaining health. theme 1: disinformation and mistrust factors such as government recommendations, public opinion, and inconsistent choices of others around them wearing face masks made participants uncertain about the transmission of covid-19. this uncertainty influenced participants' decision to continue wearing face masks and practice other disease mitigating measures. one participant explained, i don’t go out. i avoid contact with other people. if i have contact with other people, i take something to wash my hands…. if i buy food, i put on rubbing alcohol…. i’m a little panicked, but i think it’s the best thing i’ve done all this time because, thankfully, none of us have gotten it. another participant described the impact of conflicting government recommendations on the decision to wear face masks: the country was requiring and educating us to wear face masks and then said we didn’t need to.… i am not sure how bad the disease is because i have not experienced it before, but i am going to keep wearing the mask because i just don’t know how it would be to get sick. these quotes illustrate how decisions to wear facemasks were made based on independent choice and not government requirements. distrust of experts including government officials such as dr. anthony fauci from the national institute of allergy and infectious diseases and other scientists was a cited reason for study participants to continue to follow pandemic protocols because motives behind their policies were met with skepticism. this skepticism reflected perceived lack [page 26] [qualitative research in medicine & healthcare 2023; 7:10837] article no nco mm er cia l u se on ly of transparency from officials in informing people and a general sense of distrust toward officials due to the downplaying the seriousness of the crisis. one participant discussed her skepticism by sharing, “they tell us we can stop wearing masks, but when i watch the news, they tell us the rates keep going up. why would we stop wearing the masks with rates going up? because they say we can?” some participants felt there was a lack of transparency in providing information about the number of deaths and infections from covid-19 which led them to shifting their attention and trust to unofficial channels such as friends and less common news sources. as one participant said, “when i watched the news or read articles on social media or talked to friends, i felt all kinds of conflicts in the policies and what i should do.” a general consensus was expressed pertaining to a perceived lack of consistency of published information and various media and informational sources. according to the participants, the lack of an integrated scientific reference led to uncertainty of what to do among the public, lack of consensus among experts, and, thus, information confusion. one participant said “people don’t know where to get information and which information source to trust. the information is confusing from the various experts, so it’s hard to trust anyone.” despite confusion about what sources to trust, participants shared stories about staying informed about the pandemic and described relying on federal, state, and local resources, as well as traditional and social media. some participants shared how they did not know what to do or to believe because they were receiving conflicting information regarding mask wearing, social distancing, and quarantine times. participants characterized mitigation behaviors and regular testing as their responsibility, since readily available information was conflicting: so you really, really, really have to take this seriously. they say “wear that mask.” if that’s all that’s going to help, then you have to do [it]. you should be concerned and wear your mask no matter what others say. this participant indicated her level of concern about contracting the virus and adamance against those choosing not to wear masks. after public health officials stated that masks were no longer required, she did not trust the latest recommendation. participants believed that invalid information and inconsistency in information-related decisions and information were indicative of authorities' lack of planning prior to the covid-19 outbreak. as one participant said, “i feel like the leaders knew about covid for a long time, but didn’t want to do anything until people really started to get sick.” confusion regarding health policymakers’ decision-making process, combined with government's different decisions to declare closures, deem which jobs were essential, and testing and quarantine requirements were seen as misinformation. from the perspectives of participants, lack of government foresight and preparedness to guide people, failure to implement preventive measures to mitigate the public’s confusion, and political motives thus continued to spread misinformation. one participant stated, the news and information about the coronavirus unfortunately reached the people very late, the members of the community partially underestimated the pandemic, and no training was provided. i didn’t know what to do or how to proceed, so i stayed home and only went out as needed…and always wore a mask. [qualitative research in medicine & healthcare 2023; 7:10837] [page 27] article figure 1. thematic map of themes and codes. no nco mm er cia l u se on ly this participant did not trust that information was being properly communicated, leading to anxiety and hesitancy to interact directly with others. many participants shared their uncertainty about how covid variants transmit and why they did not rely solely on media sources and government agencies to guide their decisions on mask wearing, vaccinations, and social distancing. several participants said that they sought the advice of their medical providers to give them guidance on how to avoid contracting covid-19. one participant described her doctor’s evident faith in mask efficacy by saying, “i asked my own family doctor what i should do after they lifted mask mandates. she said i should keep wearing the mask.” other participants shared how they relied on the advice of their medical provider on whether or not to receive the covid-19 vaccination. one student, for example, said “i am vaccinated. it was a hard decision, but my doctor said i should.” theme 2: economic impacts stories about serious economic consequences of covid-19 were common. participants struggled to keep up with expenses and bills or were worried that their family members would be financially strained as the pandemic amplified existing difficulties. participants shared how they or their parents were out of work for periods of time because of being covid-19 positive or being exposed to someone who was positive, for example, “my dad got covid and could not work for two weeks. it’s just—pretty much it’s just that everyday struggle just got even more harder.” another participant said, “if i get covid, i will have to miss work. i cannot afford not to get paid, so i keep wearing my mask to eliminate my risk of getting sick.” in addition to days missed due to sickness, participants also revealed the economic impacts the pandemic had on their family members resulting from lay-offs, reduced schedules, and job eliminations. many participants explained that their family members were employed in sectors that were not deemed essential or were temporarily suspended during the lockdown, for example: “my mom worked in housekeeping at a hotel. the hotel was really slow, so she wasn’t needed. she was let go. it was really hard for us.” another participant said, “my dad is a carpenter. he wasn’t getting work during the pandemic, and he couldn’t get unemployment. luckily, he went back to work eventually, but we were worried.” concern about missing work was also an influence in getting vaccinated. many places of employment eventually required their employees to be fully vaccinated as a term of employment, as recalled by one participant: “i am vaccinated because my job requires it. i will have to get a booster, too, even though i don’t want to. but i can’t lose my job.” another participant stated, “i’ll do whatever it takes for us to stay open and to keep our jobs. wear a mask. get vaccinated. whatever.” theme 3: emotional impacts participants shared their experiences with loss, isolation, and illness during the pandemic. “the first impact certainly has been family. i lost my uncle…. when my parents had it, i was scared they were going to die,” noted one participant, while others grieved for family members and friends. seeing friends and family members not only endure sickness, but also economic hardships, emotionally impacted the students and evoked a sense of worry for their loved ones’ health and economic stability. the pandemic also separated family and friends, reducing supportive social groups and communities during a time of crisis, illness, and death. as participants were losing loved ones, restrictions on funeral services and visiting family members at care facilities were implemented. one participant recalled, “my grandma was sick, but we could not be with her because no visitors were allowed.” some participants felt unsafe leaving their homes and described uncertainty about who among them had the virus. leaving home also resulted in high-risk exposures. moreover, participants described risks associated with mask mandates being lifted: “how do i know if someone who isn’t wearing a mask is really vaccinated or not positive with covid? so, i just wear my mask to be safe.” many participants revealed they did not leave their home for over one year, and if they did, they only left for essential visits for groceries or to go for exercise outside and alone. theme 4: maintaining health participants stated that they abided by public health and government safety protocols, even after mandates were lifted, to avoid contracting the virus and infecting their family members. participants typically emphasized their hesitation toward lockdown, owing to the serious economic hardships they would suffer, while also stressing the importance of keeping their family members and others around them safe and healthy as the motivating reason for wearing a mask. even after being fully vaccinated, participants did not reject the use of masks, maintaining social distance, and confining at home. as one person suggested: “i think people should be willing to live more restrictive lifestyles, to include wearing masks, until there are less covid cases, to keep everyone safe and healthy.” another stated, “you do not know who is asymptomatic. you don't know who is infected and who isn't. if the person next to you is asymptomatic, and you don't wear a mask, you may get infected.” due to concerns for the health of themselves and their family members, most participants supported the idea that individuals should keep wearing masks when out in public for the foreseeable future. when asked when they would stop wearing the masks, 18 of the participants revealed they will continue to wear the mask in the immediate future, while only five revealed they have stopped wearing [page 28] [qualitative research in medicine & healthcare 2023; 7:10837] article no nco mm er cia l u se on ly masks. of the 18, when asked at what point they would stop wearing the masks, the answers varied from a few months to a couple of years. follow-up questions regarding how they determined the time frame for discontinuing wearing masks suggested that participants had no consistent rationale. one participant, for example, explained, “i am not sure why i will stop wearing the mask in six months, but it seems like it would be okay by then.” discussion this study is the first known qualitative exploration of reasons for whether young college latinas chose to follow covid-19 mask-wearing protocols after the lifting of mask mandates. given the growing latino population and the slower vaccination rates among this population, having a greater understanding of their pandemic-related healthseeking behaviors can aid public health and college officials in providing better guidance during other similar infectious events (cdc, 2022a, 2022b; kriss et al., 2022; passel et al., 2022). thematic analysis, using in-depth interviews, allowed for a phenomenological understanding of the health-seeking behaviors of young latina college students, whereas previous scholarship focused on quantitative aspects of mask-wearing behavior (davis et al., 2021; howard et al., 2021). findings of this research reflect grounded effects due to a lack of clarity from public health and other government officials during the pandemic (jankowicz, 2020; jingnan et al., 2020; yan, 2020). participants expressed uncertainty about their safety and the safety of their loved ones, with the sudden lifting of mandates motivating them to wear masks even after being told for nearly two years to wear one (jankowicz, 2020; jingnan et al., 2020; yan, 2020). despite the decision to lift the mask mandates and other protocols, the participants still did not feel safe (calfornia all, 2022). latinos, in general, lack trust in the healthcare system and often have an expectation of being discriminated against in the course of seeking treatment (jacobs et al., 2011). this lack of trust has led to health disparities in the latino population. many latinos delay treatment or avoid preventive care, contributing to disparities in ailments such as breast cancer, colorectal cancer, and vaccinations (harrington et al., 2021; hong et al., 2018; mouslim et al., 2020). in fact, though latinos now have comparable rates of covid-19 vaccination to their non-latino white counterparts, they were much slower to receive their first vaccination and to be fully vaccinated (kriss et al., 2022). nevertheless, respondents in this research indicated a proclivity to wearing masks as a way of avoiding reliance on the healthcare system, suggesting that while latinas might have been late in receiving vaccines, on one hand, suspicions of government and healthcare systems also caused them to wear masks long after mandates were lifted, on the other. despite some degree of reticence among latinos generally, participants in this study shared a tendency to consult with the individual medical providers on covid-19 related decisions. this simultaneously occurred while they were experiencing distrust in local, state, and federal public health officials. this inconsistency might have been increased due to participants being college students. armstrong et al. (2007) determined that being hispanic was associated with a higher level of distrust in physicians, but this distrust lessened with higher levels of education, thus partially explaining the contradiction reported by the participants. it is worth noting that the university from which this sample was recruited primarily serves first-generation students. as such, participants were active in attaining higher education while primarily residing in a home environment that fosters medical distrust. consequences of confusing and inconsistent messaging from public health officials throughout the pandemic were revealed in this qualitative exploration (jankowicz, 2020; jingnan et al., 2020; yan, 2020). considering the cultural, historical, and economic factors contributing to the existing general mistrust of healthcare professionals among the latino population in the u.s., distrust and uncertainty exhibited by participants were likely exacerbated by the misinformation and inconsistent messaging (harrington et al., 2021; hong et al., 2018; mouslim et al., 2020). the economic impacts of covid-19 on young latina college students were formidable because of the nature of the structure of latino families and the industries many of their family members work in (allan et al., 2016; covarrubias et al., 2019; fairlie, 2020; kantamneni, 2020; mares, 2020; “the plight of essential workers during the covid-19 pandemic.,” 2020; quandt et al., 2020). having felt these consequences earlier in the pandemic, participants in this research were hesitant to stop wearing masks. furthermore, their motivations included a desire to prevent another round of stay-at-home orders and worksite shutdowns, potentially exacerbating their already tenuous financial situation. latino families are often more tightly connected than other ethnic groups (gamoran et al., 2012). this likely contributed to the emotional impacts of the pandemic and, thus, decisions to continue wearing masks. respondents consistently expressed worry or concern for parents and grandparents, among other family members who had comorbidities, making them at a particularly high risk of contracting the virus. continuing mask-wearing seemed to help mitigate the emotional consequences of the pandemic, acting as both a literal and figurative barrier to covid-19 and its impacts. the final theme of maintaining health is indicative of the focus on public health, social distancing, mask-wearing, and hand hygiene prevalent throughout the pandemic (cdc, 2022a). while participants were unclear about the best way to proceed, given the conflicting information, they perceived their health and the health of their family [qualitative research in medicine & healthcare 2023; 7:10837] [page 29] article no nco mm er cia l u se on ly members to be a priority (jankowicz, 2020; jingnan et al., 2020; yan, 2020). wearing masks, even after the lifting of the mandates, was a way for them to help ensure individual health and a healthy family. the handling of the pandemic and related policies was highly politicized in the united states (oberlander, 2020). thus, the protocols recommended to limit viral transmission were perceived through political lenses (alberti et al., 2020; bailey & moon, 2020). this resulted in confusion and distrust among the u.s. public, consistent with the experiences shared by the participants in this study. the need is clear for a less politicized and more systematic plan for addressing future communicable disease outbreaks (alberti et al., 2020). understanding how the handling of the covid-19 pandemic impacted latinas and other underrepresented groups can help provide the foundation for establishing this plan. there are some limitations in this research. all of the respondents were recruited from a single university in one western state. as such, the results of this qualitative study may have limited generalizability to latinas in other regions of the country. while all participants were college students, this sample was drawn from a university with a large proportion of first-generation students who are receiving financial aid. these students may have a different perspective than latinas in general. additional research on latinas from more conservativ eother states, for example, may have different findings. conclusions inconsistent messaging from public health officials during the pandemic contributed to confusion and resistance of the various mandates. the majority of the latina college students interviewed for this research chose to continue to wear masks and follow other covid-19 protocols, despite public health and university officials lifting the mask mandates. these participants expressed disinformation and mistrust, concern about economic and emotional impacts, and maintaining health as themes leading them to continue this health-seeking behavior. references ajmc staff. a timeline of covid-19 developments in 2020. 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(2020). covid-19 pandemic among latinx farmworker and nonfarmworker families in north carolina: knowledge, risk perceptions, and preventive behaviors. international journal of environmental research and public health, 17(16), 5786. romer, d., & jamieson, k. (2020). conspiracy theories as barriers to controlling the spread of covid-19 in the us soc sci med. 2020; 263: 113356. social science & medicine, 263, 113356. the california state university (2021). california state university to implement covid-19 vaccination requirement for fall 2021 term. retrieved june 4 from https://www.calstate. edu/csu-system/news/pages/california-state-university-toimplement-covid-19-vaccination-requirement-for-fall2021-term.aspx the plight of essential workers during the covid-19 pandemic. (2020). lancet, 395(10237), 1587. utych, s. m. (2021). messaging mask wearing during the covid-19 crisis: ideological differences. journal of experimental political science, 8(2), 91-101. who. (2020). listings of who’s response to covid-19. retrieved june 8 from https://www.who.int/news/item/29-062020-covidtimeline yan, h. (2020). want to prevent another shutdown, save 33,000 lives and protect yourself? wear a face mask, doctors say. cnn. retrieved june 8 from https://www.cnn.com/2020/06/ 25/health/face-mask-guidance-covid-19/index.html [qualitative research in medicine & healthcare 2023; 7:10837] [page 31] article online supplementary material: appendix 1. interview questions. appendix 2. participant demographic data. total participants, n=23. no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2018; 2:7582] [page i] writing about dostoevsky’s work, m.m. bakhtin wrote that he heard voices in everything and dialogic relations among them.1 by this bakhtin meant that the characters in dostoevsky’s novels took over the author’s story as unique persons, each of them unique voices engaged in conversations with one another. along these lines, i see the authors in this issue taking part in a metadialogue that is, endeavoring to build a dialogic understanding of communication. in examining healthcare voices speaking for what is and what could be, the six articles in this first issue of 2018 tell us about providers, patients, and the social and cultural contexts which give meaning to them as both distinct speakers and interlocutors. from the opening article, which features the voice of louise phillips, author of the insightful critique of action research the promise of dialogue,2 we are presented with a notion of dialogue not as agreement or harmony (as it is often misconstrued) but as a fascinating tension for analysis. in de-romanticising dialogue in collaborative health care research: a critical, reflexive approach to tensions in an action research project’s initial phase dialogic researchers and practitioners phillips, ravn, scheffmann-petersen, helle and merete nordentoft take on the romantic notion of dialogue as symmetrical, powerfree and inclusionary communication, a sort of unicorn to be captured in ideal research practices. the authors develop their critique reflexively, from the inside out, by paying attention to the ways in which, in their own narrative of collaboration, the discourse is made up of productive asymmetries, dilemmas and tensions, and how these actually allow – rather than impede – communication. to claim that something is dialogic in the romanticized sense, without understanding that dialogue is fraught with tensions and possibilities, is, as the authors note, a claim to authorize the researchers’ voice over those of others. the articles that follow touch on phillips et al.’s observations by rejoining dialogues in different healthcare situations, and underscoring the role of different voices in conversation with each other; in each of these insightful qualitative research studies, we find participants engaged in discussions about difficult matters and that, therefore, matter a great deal for communication. in waiting for the doctor to ask: influencers of lesbian, gay, and bisexual identity disclosure to healthcare providers, hudak and carmack analysis of interviews with lgbt patients addresses an important gap health communication research. the authors examine patients’ understanding of disclosure about sexual orientation and how they go about deciding how to navigate asymmetries of knowledge and authority. as a communication scholar interested in institutional asymmetries and authority, i find it interesting how disclosure in healthcare tends to be theorized as one-way communication (for providers are not presumed to disclose) and therefore materialized as an a priori barrier in research questions. hudak and carmack’s study argue that heteronormativity is also an a priori assumption, and that patients’ decisions to tell providers otherwise is an important move in dispelling it, and creating the tension necessary for dialogue to occur. the authors’ analysis suggests that (dialogue about) disclosure is contingent on the ways in which patients imagine the possibilities of dialogue with practitioners. in turn, this tells us about the fragility of identity and the need to protect it from scrutiny, and the dilemmas between what could and should be known. because the way patients imagine practitioners’ responses has everything to do with their own communication disclosure is not a one way street at all, but, as the authors contend, everyone’s effort and a multi-voiced exchange. the research studies by carmack and serafin and hook, plump and geist-martin continue in this vein. reading them, i am reminded of what blommaert calls superdiversity3 or the speaking from diverse if not conflicting positions, with each voice embodying multiple editor’s introduction mariaelena bartesaghi department of communication, university of south florida, tampa, fl, usa correspondence: mariaelena bartesaghi, department of communication, university of south florida, cis 1040, 4202 e. fowler ave, tampa, 33620 fl, usa. tel.: +1.813.974.2145 fax: +1.813.974.6817. e-mail: mbartesaghi@usf.edu received for publication: 28 may 2018. accepted for publication: 28 may 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright m. bartesaghi, 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:i-ii doi:10.4081/qrmh.2018.7582 qualitative research in medicine & healthcare 2018; volume 2:i-ii no nco mm er cia l u se on ly identities. in college students’ communication about complementary and alternative medicine practices, for instance, we find out that college students who have chosen complementary and alternative medicine (cam) over traditional approaches will not tell others about their choice unless asked. as a person with severe fibromyalgia surrounded by so many with debilitating autoimmune conditions, environmental allergies and food intolerances, this article truly resonated with me. as carmack and serafin’s interviewees discuss, western medicine seems to have neither interest, understanding, nor treatment for any of the complexities of chronic suffering; instead, patients like me have found relief with modalities such as acupuncture, massage modalities, meditation, aromatherapy, or reiki. yet we who are suffering may not initiate conversations our well-reasoned decisions, for fear of being judged or generally stigmatized by others – and especially so by healthcare practitioners. because these conversations need to happen if patients want others to take cam seriously, and especially to educate the medical community about the benefits of cam, i agree with the authors’ recommendation that we become proactive in instigating them. as if taking the next turn in a conversation between patients, providers, the researchers and multiple other addressees, the study by hook, plump and geist-martin takes the perspective of integrative medicine (im) physicians. in advocating for integrative medicine: providers’ stories of resonance, negotiation, and community the authors point out that im – a blend of complementary, alternative and biomedical approaches – is an ancient and well-established tradition, tracing back to the work of aristotle. notwithstanding, patients who benefit from im often will not volunteer the reasons for their choice (and this we know from carmack and serafin, too!), leaving providers to advocate for what they do. as the narratives of im providers tell us, their ability to promote what they do depends on negotiating their convictions in a broader political climate, and biomedically oriented colleagues who can be less receptive to im for a variety of reasons, including protecting their own turf. for im providers to advocate for their work thus requires that other voices rejoin their own – those of donors and patients most prominently. as hook et al. point out, doing qualitative research with interviews and narratives, which means making the study itself a site for the materialization of dialogue, is itself an opportunity for advocacy, for it allows providers and patients alike to speak. and this means that new ways of materialization, or of bringing forth experience by way of dialogue do emerge. our family portrait: the church as a model of social support offers an example of how this works. in her study liza ngenye examines how the metaphor of church as family works as a way for members to build a relational practice as well as to make sense of their fit within the church. in a sense, members are in constant dialogue with each other and the church itself as a figure of what ngenye interprets as social support; it is this dialogue which members have qua family members which, in turn, justifies having the pastor as father figure, for example, in charge of the spiritual health of his family/flock. so, the way we position ourselves in communication allows for certain forms of communication to actualize, to actually become the church. the final article in this issue, bad girl and unmet family planning needs among sub-saharan african adolescents: the role of sexual and reproductive health stigma by stidham hall, manu, morhe, dalton, sneha challa, loll, dozier, zochowski, boakye and harris builds on goffman’s notion on stigma as discredited and tainted identity to examine how it affects the possible dialogues of young women in ghana. that of bad girls – from tarnished, spoiled and morally failed families – is the identity category that community elders assign to adolescent girls who seek sexual and reproductive healthcare. the only way for the girls to renegotiate their voice (or claim one at all) is to marry or become more socially accomplished, therefore transcending their doomed future. therefore, their need for a conversation about sex and family planning cannot happen on the adolescents’ terms. through their analysis, the authors allow for a multiple appreciation of dialogue as a productive way of understanding of communication, first, by allowing us to realize the multiplicity of realities available according to the conversations (or silences) that we are able to enact; second, by connecting these realities to material consequences, reproductive health, in this case, and in case of the other studies in this issue advocacy, disclosure, ways of doing research and ways of being supported in a church setting and thirdly, by taking an ontological approach to dialogue that allows us to acknowledge what we have created in our research practices. i hope this issue raises questions, brings about dynamic and productive conversational tensions, and initiates disclosures. references 1. bakhtin mm. speech genres and other late essays. texas: university of texas press; 1986. pp 169. 2. phillips l. the promise of dialogue. the dialogic turn in the production and communication of knowledge. london: john benjamins; 2011. 3. blommaert j, varis p. enough is enough: the heuristics of authenticity in superdiversity. working papers in urban languages and literacies. tilburg, nl: university of tilburg; 2011. available from: https://www.kcl.ac.uk/sspp/ departments/education/research/research-centres/ldc/ publications/workingpapers/the-papers/76.pdf. accessed: may 2018. [page ii] [qualitative research in medicine & healthcare 2018; 2:7582] editorial no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2020; 4:9454] [page iii] the works in this issue, whether directly or indirectly, speak to the invaluable role of qualitative inquiry in offering viable solutions or alternative affordances for the practices that are studied. in their research on assembling teams of providers, as diverse as mds, pharmacists, psychologists and dieticians in medical homes devoted to treating patients for chronic inflammatory bowel disease, ksenia gorbenko, eliezer mendelev, marla dubinsky, and laurie keefer work alongside providers to understand how the holistic approach of medical homes can become a model for treating chronic illnesses that cannot be addressed in the fragmentated way that is all too common in medical practice.1 each of the five research studies demonstrates how applied knowledge is accountable knowledge, in two important meanings of the term account-able. the first is that it takes experiential accounts seriously. when providers, patients or clients speak or act in qualitative in the presence of accountable qualitative researchers, their words and actions are situated in the complexity of what often are multiple and overlapping contexts: the interview, the life story, the health experience, the social experience, institutional constraints, what is and what is possible. interviewees’ voices are enmeshed and in constant dialogue and tension with those of other speakers; the researchers’ work is that of carefully teasing them out and showing the implications of how different the healthcare experience might be if speakers could hear each other and were heard across multiple contexts. this publication is itself a context where accounts are taken seriously and accountable voices traverse contexts. the second meaning of accountable knowledge, of which the article “using an adapted case study approach to understand rural veteran experiences in patient engagement and patient-centered care research” by kara a. zamora, traci h. abraham, christopher j. koenig, coleen c. hill, jeffrey m. pyne and karen h. seal provides a particularly good example, attends to the researchers’’ reflexivity and transparency.2 research constitutes a particular universe by way of interpretation of data. being reflexive and transparent means taking responsibility for the interpretations advanced of the accounts of those we study, and of the universes we bring forth in our research, because it is the same universe we should wish to inhabit ourselves. zamora and her colleagues offer a methodologically lucid explication of how the research team arrived at the coding categories that make up their analysis, and the steps that were required of them to feel confident that they offered the most valid and compelling interpretation. the awareness that other’s accounts are not a representation of something out there, but require interpretation, and that this should be accounted for carefully, so that we can judge for ourselves about its validity and usefulness, is accountable knowledge. the researchers’ voices should not be obscured by third person passive formulations, but heard as active interpreters of the version of how things are and how they could be. zamora and her co-researchers do exactly that; the study complicates the institutional definition of veterans’ engagement by listening to veterans’ accounts, and analyzing them with great care. in both “drinking as routine practice among re-integrating national guard and reservists from arkansas”3 and “trauma, violence and recovery in the life stories of people who have injected drugs”4 the researchers adopt a life history approach, weaving informants’ accounts about the sensitive subject matter under investigation into multiple unfolding contexts of their lives. life history interviews, which originated to preserve the memories of native americans, are, as jesse argues “particularly beneficial for revealing the tangle of relations and symbiotic interactions that exist between an individual’s memories and those memories that circulate in the broader cultural circuit in which individuals are embedded – referred to most commonly as collective memory” (2018, p. 2).5 they are thus occasions for the interviewees’ reflection, consideration, and realization of coherence of their own seeditor’s introduction: applied qualitative research mariaelena bartesaghi university of south florida, tampa, florida correspondence: mariaelena bartesaghi, associate professor, communication, university of south florida cis 1040, 4202 e. fowler ave, tampa, fl 33620, usa; editor-in-chief, qualitative research in medicine and healthcare. e-mail: mbartesaghi@usf.edu received for publication: 3 november 2020. accepted for publication: 3 november 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:iii-iv doi:10.4081/qrmh.2020.9454 qualitative research in medicine & healthcare 2020; volume 4:iii-iv no nco mm er cia l u se on ly quential accounts in terms of life at the time of the interview for the purpose of telling the story, and therefore making sense, of their drinking and their drug use in the historical and social context of the questioning. researcher and interviewee work together to create a version of life for the research project that will be able to make a difference, not just for the parties involved in the questioning dynamic, but for the larger discourses elicited and indexed by the research question at hand; in this case, reshaping the meanings of drinking and drug use. in their life-history study of drinking as routine practice among reintegrating military, traci h. abraham, ann m. cheney, geoffrey m. curran, and karen l. drummond do just that. by understanding drinking as habitual practice: an acceptable and ratified way for active military to cope with the demands and incredible stress placed on them, the researchers trace the trajectory of how part of a soldier’s social capital, a “learned behavior that is rewarded and valorized during military service”3 turns into addiction and isolation in the context of the new story needed for life as civilians. this leads the researchers to recommend that the practice of drinking be addressed during active service much with much greater attention; in other words, that the life histories of the men they interview be the impetus for a new social history. similarly, the study by richard hammersley, marie reid, phil dalgarno, jason wallace, and dave liddell decenters the master narrative of drug use from the psychological version of individual failing (or predisposition) to the stories of users’ lives.4 in these stories, we hear how drug use, just like drinking is for men in military service, a coherent and meaningful act in the midst of systemic violence, which drugs may both help alleviate for the user and, tragically, add to the users’ precarious lives. reconstructing addiction in this way points to very different social interventions than those that have to do with users’ mental fallibility. the closing article, “a focused ethnography of endoscopy practitioners utilisation of capnography in sedated patients” by deemah aldossary and sherran milton takes us to the practice of anesthesia in endoscopy and the accounts of practitioners and nurses about the technology of capnography.6 capnography, which is the monitoring of the patient’s respiratory status during sedation means quite different things for medical staff and nurses who are engaged in its practice, albeit as part of different healthcare cultures. while to the first group capnography means attention to the data and its monitoring, to nurses it means following the physicians’ orders while keeping their attention focused on the patient. i found this fascinating, not just for this particular case and what it means for integrating the practice of capnography, but for what qualitative research can do to understand practices by simply asking those who engage in them routinely to account for their own meanings. and how methodological reflexiveness and transparency can make sure that our approaches to understanding what is important about healthcare practices can put forth significant applications for more productive, efficient, sensitive, destigmatizing, inclusive ways of practicing healthcare. references 1. gorbenko k, mendelev e, dubinsky m, keefer l. establishing a medical home for patients with inflammatory bowel diseases: a qualitative study. qual res med healthcare 2020;4:75-82. 2. zamora ka, abraham th, koenig cj, hill cc, pyne jm, seal kh. using an adapted case study approach to understand rural veteran experiences in patient engagement and patient-centered care research. qual res med healthcare 2020;4:54-64. 3. abraham th, cheney am,curran gm, & drummond kl. drinking as routine practice among re-integrating national guard and reservists from arkansas. qual res med healthcare 2020;4:43-53. 4. hammersley r, reid m, dalgarno p, wallace j, liddell d. trauma, violence and recovery in the life stories of people who have injected drugs. qual res med healthcare 2020;4:65-74. 5. jessee e. the life history interview. in: liamputtong p. (ed.). handbook of research methods in health social sciences. springer, singapore; 2018. pp. 1-17. doi:10.1007 /978-981-10-2779-6_80-1 6. aldossary dn & milton s. a focused ethnography of how endoscopy practitioners utilize capnography in sedated patients. qual res med healthcare 2020;4:83-93. [page iv] [qualitative research in medicine & healthcare 2020; 4:9454] editorial no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2023; 7:10823] [page 1] introduction in a span of just over one month, the novel coronavirus (covid-19) escalated from a global health emergency to a global pandemic as declared by the world health organization on march 11, 2020 (world health organization [who], 2020). the rapid transmission of covid-19 prompted travel restrictions, school and business closures, physical distancing and masking guidelines, and unprecedented strain on hospital systems worldwide. akin to other historical pandemics, the outbreak of covid-19 also intensified preexisting sentiments of racism and xenophobia (clissold et al., 2020). in the united states, covid-19 coincided with a contentious political season and intense activism among citizens championing racial equality and policy reform to current policing practices. the intersection of politics, social unrest, and medicine during this time generated an especially demanding clinical environment for healthcare workers. politics, policies, and patient care: rehabilitation therapists’ experiences during the covid-19 pandemic rachel m. vaughn, nancy bagatell, heather mcgovern, raiya feinberg, katherine hendry, ramis chowdhury jessica m. cassidy department of health sciences, the university of north carolina at chapel hill, chapel hill, north carolina, usa abstract the year 2020 represents a historically turbulent period for the united states marked by the covid-19 pandemic, a contentious political season, and heightened awareness of racism among citizens. this intersection of medicine, politics, and social unrest generated a demanding clinical environment for healthcare workers, including understudied groups such as physical therapists, occupational therapists, and speech-language pathologists. this descriptive qualitative study focused on experiences and perspectives of clinical rehabilitation therapists working in inpatient rehabilitation and acute-care units from september to november, 2020. thirteen participants completed individual, semi-structured interviews focused on clinical practice and coping strategies. the analysis included a multi-step, inductive process. four interconnecting factors chronicling participants’ experiences emerged: sociopolitical, institutional, hospital unit, and personal. stressors and buffers were noted that further shaped individual experiences. utilization of an ecological framework provided a way to recognize the impact of a complex range of social and environmental factors affecting participants’ experiences on personal and professional levels. awareness of rehabilitation therapists’ experiences enriches understanding of the pandemic’s effect on healthcare workers and presents clinical implications for healthcare systems to promote therapist well-being. correspondence: jessica m. cassidy, department of health sciences, the university of north carolina, 321 columbia street, chapel hill, 27514 nc, usa. tel.:919-843-5774. e-mail: jcassidy@med.unc.edu key words: covid-19; rehabilitation; therapist; qualitative; experience. contributions: jmc, nb, and sg contributed to the conception and design of the study; jmc, nb, hm, rc, rf, and kh collected data; rmv, jmc, nb, hm, rc, rf, and kh analyzed and interpreted the data; rmv, jmc, and nb drafted and critically revised the manuscript; hm, rc, rf, and kh provided initial manuscript edits; all authors provided final approval for publication and agree to be accountable for all aspects of the work. conflict of interest: the authors declare no conflicts of interest. funding: this research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors. informed consent: all patients participating in this study signed a written informed consent form for participating in this study. patient consent for publication: written informed consent was obtained from a legally authorized representative(s) for anonymized patient information to be published in this article. availability of data and materials: all data generated or analyzed during this study are included in this published article. acknowledgements: we are grateful for the assistance provided by kelly n. fletcher, pt, dpt, mha, susan gisler, pt, dpt, mha, and jasper i. mark, bs. received: 30 august 2022. accepted: 18 january 2023. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2023 licensee pagepress, italy qualitative research in medicine & healthcare 2023; 7:10823 doi:10.4081/qrmh.2023.10823 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. qualitative research in medicine & healthcare 2023; volume 7:10823 no nco mm er cia l u se on ly depression, anxiety, and stress among healthcare workers, particularly in doctors and nurses providing frontline care during the covid-19 pandemic, are welldocumented in the literature (benfante et al., 2020; cai, et al., 2020; lai et al., 2020; spoorthy, 2020). recent work also acknowledges burnout in 67% of healthcare respondents (denning et al., 2021) previously defined as, “a syndrome of emotional exhaustion and cynicism” (p. 99) that negatively impacts clinical practice (maslach et al., 1981) along with documentation of secondary traumatic stress disorder (orrù et al., 2021) or vicarious traumatization (greinacher et al., 2019) arising from caring for others enduring physical and psychological trauma. of 184 healthcare workers representing 45 countries surveyed during the height of the pandemic in spring of 2020, 41.3% expressed symptomology consistent with secondary traumatic stress (orrù et al., 2021). statistically significant predictors for secondary traumatic stress identified included perceived stress and emotional exhaustion in addition to patient death (orrù et al., 2021). many factors contributing to the mental health decline among physicians and nurses, such as rapidly changing policies and protocols, increasing workload demands, stress associated with contracting and exposing others including family members to covid19, and insufficient personal protective equipment supply (greenberg et al., 2020; sriharan et al., 2020) extrapolate to rehabilitation professionals including physical therapists, occupational therapists, and speechlanguage pathologists. these professions typically involve evaluation and intervention techniques requiring close contact with patients for long durations (30+ minutes per treatment session on average). despite the publication of covid-19 clinical practice guidelines and recommendations across physical therapy (felten-barentsz et al., 2020), occupational therapy (hoel et al., 2021), and speech-language pathology (namasivayammacdonald & riquelme, 2020) professions, these groups have received little study attention to date despite their valuable and ongoing role in promoting patient quality of life, safety, and independence across areas of mobility, participation in meaningful activities, and communication. notable findings from predominantly survey-based studies during covid-19 acknowledged the presence of anxiety and depression in physical therapists (n=65) (yang et al., 2020) and also reduced morale in a cohort of 2,750 occupational therapists representing 100 countries (hoel et al., 2021). respondents in the latter study also noted the negative impact of covid-19 on their profession due in part to a lack of preparedness, additional practice demands, mastery of novel technology, space and personal protective equipment limitations, and reduced accessibility to occupational therapy services (hoel et al., 2021). a recent study employing a mixed-methods approach towards understanding the impact of covid-19 on occupational balance (i.e., the balance of participation across a variety of valued activities) among occupational therapists (n=42) suggested minimal adverse effects of the pandemic on occupational balance, potentially reflecting resilience and effective coping strategies across the cohort (tse et al. 2021). lastly, two qualitative studies involving 30 physical therapists representing 11 national public hospitals in spain examined therapists’ emotions and feelings (palacios-ceña et al., 2021a) and experiences (palaciosceña et al., 2021b) of working on the frontlines during the covid-19 pandemic from march to may, 2020. major themes emerging from these studies included “emotional roller coaster” that reflected a wide range of emotions and coping strategies, “working in war time” that captured therapists’ reckoning with fear, policy updates, and donning/doffing their “armor” (personal protective equipment), and “when i arrive at home” that encapsulated the impact of their frontline experiences on their family and home life (palacios-ceña et al., 2021a; palacios-ceña et al., 2021b). these studies provide rich descriptions of therapists’ experiences in a particular context (i.e., spain). given that experience is contextual, further research is warranted. therefore, the purpose of this study was to describe therapist experiences from working in acute and inpatient rehabilitation environments at a university-affiliated medical center in the southeast region of the united states during the covid-19 pandemic. our specific research questions were i) how did rehabilitation therapists experience work during the pre-vaccination phase of the covid-19 pandemic? and ii) what factors influenced their experience? we employed a descriptive qualitative approach to describe and summarize experiences as conveyed by therapists during a specific tumultuous time period in the united states marked by the covid-19 pandemic. the theoretical framework used to guide our analysis was the socioecological framework (bronfenbrenner & morris, 2006). unlike other qualitative research approaches, descriptive qualitative research does not necessarily begin with a specific theoretical or philosophical perspective (lambert & lambert, 2012). however, as we engaged in our data analysis process, it became clear that the socioecological theory provided a useful framework to guide our understanding of the therapists’ experience. in the socioecological framework, bidirectional interactions between the individual and an array of nested and interrelated micro-, meso-, exo-, and macrosystems influence the individual’s experience (bronfenbrenner & morris, 2006; bronfenbrenner, 1977). this framework considers the component of time whereby interactions between the individual and respective ecosystems are fluid as determined by a specific moment or period (historical context). initially serving as theoretical framework to describe child development, bronfenbrenner’s [page 2] [qualitative research in medicine & healthcare 2023; 7:10823] article no nco mm er cia l u se on ly subsystems refer to both immediate and outside environments encompassing home, family, school, community, and culture (bronfenbrenner, 1974). healthcare research has also adopted this model (adibe, 2021). consistent with our purpose, therapists’ experiences during the covid-19 pandemic (temporal context) may be shaped by multiple interrelated factors including personal (individual), interactions with patients and colleagues (micro-), changes occurring within the hospital institution (meso-), and attitudes toward the pandemic within their communities (exo-) and beyond as a society (macro-). materials and methods we utilized a descriptive qualitative design (sandelowski, 2000; sandelowski, 2010) as we sought to describe and summarize experiences as conveyed by therapists at a specific period in time during the covid19 pandemic (fall, 2020). to accurately capture and describe the therapists’ experiences, we remained close to the data throughout the analysis process. because we were interested in experience, we acknowledged the “hues, tones, and textures” (sandelowski, 2000) (p. 337) of a phenomenological approach as the study progressed. given the pandemic restrictions for in-person gatherings, all data was collected virtually. as noted by pocock et al. (2021), virtual qualitative research can be conducted ethically and may provide some advantages to traditional inperson methods. procedures we recruited physical therapists, occupational therapists, and speech-language pathologists who worked fulltime on an inpatient rehabilitation or acute care unit at a large university-affiliated hospital in the southeastern united states. participants were recruited via an email announcement that clinical managers forwarded to clinicians working on the two units. interested participants then contacted the principal investigator via phone or email to schedule their interview. all communication with participants was completed via hipaa-compliant virtual communication platforms (i.e., zoom and webex). this study was approved by the institutional review board at the university of north carolina at chapel hill (approval no. 20-1509), and participants provided verbal informed consent. data collection occurred from september to november, 2020. our primary source of data was semi-structured interviews conducted virtually. additionally, questionnaires provided demographic and clinical background information and were either completed with an investigator during the virtual session or self-administered following the session. semi-structured interviews, consisting of open-ended questions, were conducted to obtain information about clinician experiences, both professional and personal, during the covid-19 pandemic. interview questions focused primarily on changes, challenges, and coping. the interview guide included questions such as “how does it feel to go to work these days?” and “describe some of the challenges you’ve encountered at work and outside of work.” interviews were conducted by the principal investigator and research assistants, who received training on qualitative interviewing and strategies to elicit detailed responses. interviews averaged 45 minutes. data analysis was completed by a team comprised of researchers and students clinically trained in rehabilitation along with students interested in health professions. analysis of the semi-structured interviews involved a multi-step, inductive, and iterative process based on braun and clarke’s (2006) six phases. first, all interviews were transcribed verbatim, resulting in over 100 pages of single-spaced text. transcripts were then de-identified. team members first familiarized themselves with the data. next, transcripts were divided among team members for analysis, with two team members assigned to analyze each interview. team members each read and coded half of the transcripts independently, generating descriptive and verbatim codes (saldaña, 2016) before coming together to compare and establish a list of codes for a code book. the process of establishing a code book entailed multiple meetings as we discussed our different readings of the texts and returned to the text to ensure that codes captured the explicit or surface meanings of the data (braun & clarke, 2006). once code names and definitions were established in the code book, team members recoded the transcripts to ensure that the therapists’ experiences were captured thoroughly with nearly all of the text assigned a code. a final review of codes was done by the research team. our next step was to determine relationships between codes and to group the codes into categories. nearly all of the codes fit in a category. we talked at length about each category and reached consensus about how it reflected the therapists’ experiences. each team member developed a schematic to represent the relationships between the categories. as the team discussed our schematics, we were struck by how our categories reflected the socioecological framework and concluded that this framework had great utility and captured the participants’ experiences. the socioecological framework developed by bronfenbrenner (bronfenbrenner, 1974; bronfenbrenner & morris, 2006) provided a way to recognize the impact of a complex range of interacting social and environmental factors affecting rehabilitation therapists’ experiences during the fall of 2020. this framework recognizes individuals as nested within larger ecosystems. it also recognizes that individuals affect and are affected by a complex range of socioecological factors. the resulting themes were conceptualized as interrelated factors af [qualitative research in medicine & healthcare 2023; 7:10823] [page 3] article no nco mm er cia l u se on ly fecting therapists’ experiences during covid-19. see table 1 for factors and sample codes. to increase the rigor and trustworthiness of this study, the team engaged in and documented an iterative process of revisiting the data, discussing themes, and refining our analysis. team members engaged in reflexive practices by writing memos and discussing during team meetings how our own experiences as researchers and rehabilitation professionals may have influenced our reading and interpretation of data. finally, though we did not ask the participants to review transcripts, we did present our preliminary findings to a group of therapists and managers at the hospital and received feedback which helped us further consider the interrelated aspects of our themes. participants thirteen therapists comprising six occupational therapists, four physical therapists, and three speech-language pathologists, ranging in age from 24 to 47 years (mean = 34.9 ± 8.1 years), participated in the study. ten participants identified as female, and three identified as male. eleven participants identified as white, and two identified as asian. eight participants worked in an inpatient rehabilitation environment, with the remaining working in an acute care environment. participants’ years of clinical experience ranged from one to 22 years with a mean of eight years. context the majority of participants practiced full-time in an inpatient rehabilitation facility where the emphasis of patient care is the promotion of independence and quality of life. there are several distinct features of an inpatient rehabilitation facility setting that provide important context to this work. patients admitted to an inpatient rehabilitation facility are medically stable and are expected to complete at least three hours of intense therapy per day over an average length of stay of two to three weeks with the goal of discharging to their home. meeting these expectations necessitates therapists’ working closely with their patients to promote safety and independence with such tasks as mobility, participation in meaningful activities, speech and language, swallowing, and communication. the remaining participants practiced in an acute care unit. here, therapists treated medically complex patients requiring frequent care from medical staff in conjunction with their therapy. a few of these participants also worked in the hospital’s specialty covid-19 unit, providing acute care therapy services to patients with covid-19. results our findings are presented according to the interconnected social and environmental factors influencing participants’ experiences: sociopolitical, institutional, hospital unit, and personal. each factor is described, and illustrative quotes are presented. though these are expressed as distinct factors, our findings underscore that multiple interacting factors and environments are unable to be fully separated from one another. within each factor, stressors and buffers that further shaped individual experiences are acknowledged. sociopolitical factors participants discussed a range of sociopolitical factors which impacted their experience as rehabilitation therapists. it is important to consider the political context in fall, 2020 as the country was not only facing a pandemic that was quickly becoming politicized, but was also in the midst of a contentious election accompanied by heightened awareness of racial disparities. the participants noted how, at the start of the pandemic, they were viewed by the public as “healthcare heroes.” as one participant noted, “when this all started it was like, ‘we love our healthcare workers,’ and ‘they’re so great,’ and, you know, ‘let’s clap for them as we leave work.’” over time, however, therapists felt public support [page 4] [qualitative research in medicine & healthcare 2023; 7:10823] article table 1. factors and sample codes. factors sample codes sociopolitical public perceptions of covid-19 disproportionate rate of covid-19 in minority communities institutional visitor policies covid-19 testing procedures interpreter policies hospital unit maintaining quality of care support from management caregiver training and education personal protective equipment camaraderie with co-workers personal “measuring the risk” of social encounters change in routines use of self-care strategies no nco mm er cia l u se on ly waning as covid-19 became more politicized and fatigue with following guidelines set in. the therapists found themselves frustrated that “people in the community are like, ‘i don’t believe it [covid] exists’ or ‘i’m not going to wear a mask.’” having to go to work each day and see very sick patients created a “strange disconnect” with the public. as one therapist noted, “it’s more frustrating when you are seeing and actually treating covid patients and you go back into the real world and where no one cares.” navigating the political nature of the pandemic at times impacted personal interactions, with one participant stating: i stay away from most of my family... outside the people living in my house.... i have some non-believers [laugh] in my family, umm, who no matter what i say about what i see, they don’t believe me.... they don’t consistently wear masks, they don’t stay away from crowds, and so they don’t do what they’re supposed to do. additionally, several therapists noted the inordinate number of spanish-speaking patients with covid-19, with one therapist emphasizing, “it seems to be hitting that population a little more.” for many therapists, the covid-19 pandemic brought the social and racial injustices and inequities in health care to the forefront. one participant articulated: for me, one of the big things is the way that minority groups with covid are being disproportionately affected by the disease and their health care is also affected by it. i think that is a huge thing that i have learned and experienced and seen while working in the hospital. that applies to all medical conditions, but i think especially covid because it is really hitting different racial and ethnic groups differently because of the way that our whole system...is set up. this is very infuriating to me, and so all of these social justice movements that are happening right now on top of covid are really applicable, specifically to this group. overall, these experiences during the pandemic provoked a heightened awareness of the intersection of sociopolitical factors with health care. institutional factors participants’ experiences were shaped significantly by policies set by the hospital institution. as the pandemic unfolded, these policies changed almost daily in response to state and federal guidelines and recommendations. though the therapists understood the need for policy changes, at times they did not always feel that changes were communicated efficiently, often leaving them feeling vulnerable and frustrated. one participant noted: some of the policies around covid testing for employees has certainly been another sort of stressor.... i recently found out, just a few days ago, that now they have decided that they are going to charge employees for covid tests, which again has, been just another stressor. while hospital employees ultimately did not bear expenses for covid-19 testing, the above quotation draws attention again to heightened anxiety among participants. some of the participants also felt that policy changes occurred with little input from the managers of the rehabilitation and acute care unit-individuals that understood the professional roles and responsibilities of the participants and the implication of these policy changes on participants’ clinical practice. for example, initially, all patients were tested for covid-19 prior to their admittance to the inpatient rehabilitation facility. however, this policy reportedly changed without prior communication with the therapists. one participant stated that patients on the inpatient unit receiving therapy suddenly had their therapy paused while being ruled out for covid-19, since testing was no longer required before admission to the unit. this led to concerns and heightened anxiety about exposure to covid-19. because frequent policy changes were implemented or made effective immediately, efficient communication was a challenge and, in this instance, impacted the ability to provide therapy. another change in policy that caused increased stress was the visitor policy. initially, visitors were not allowed in the hospital. the impact on patients and their care was significant. participants noted how concerned they were about their patients feeling isolated, lonely, and scared. this was especially true for non-englishspeaking patients who typically relied on interpreters or family to communicate needs and concerns. one participant explained how this policy exposed issues of equity and justice: so much of communication and patient advocacy happens through family members. i think when people are left isolated, they are much less able to advocate for themselves, especially if they are non-english-speaking. another participant noted: but sometimes we don’t seem to have as many interpreters available, so sometimes we’ve been using this ipad of which we kind of jokingly called the “interpreter on a stick” because it’s on a rolling thing. visitor policies restricting family and friends and interpreter availability were stressors identified by several participants. however, when the policy changed and vis[qualitative research in medicine & healthcare 2023; 7:10823] [page 5] article no nco mm er cia l u se on ly itors were allowed into the hospital, participants expressed concern about increased risk of exposure. for example, one participant noted: when things were really strict and limited, and it was pretty much just staff that were there. i felt very safe, like the lobbies weren’t so crowded. and now, as things get more and more lenient, you just don’t know what other people are doing. you don’t know how many other people have been exposed, if they’re truly wearing the mask all the time, if they’re washing their hands. that kind of stuff. so common areas like the hospital lobbies and things like that, that’s mostly where i start to feel a little uncomfortable. there are just too many people walking around. in contrast, some participants noted that some of the policy changes acted as buffers which resulted in decreased stress. for example, participants noted that with new policies, they were able to park closer to the hospital, remote meetings saved time, and ordering food for patients was more efficient and a buffer for stressful working conditions. hospital unit factors participants working on both inpatient rehabilitation and acute care units continued to provide care to their patients through the pandemic. they, like everyone else in the hospital, were expected to use personal protective equipment, maintain social distancing when possible, and follow strict sanitation procedures. participants described feeling cautious and in some cases, anxious, about the potential for exposure when interacting with patients and caregivers. several participants discussed the challenges with managing sociopolitical factors within the hospital unit, with one participant noting: unfortunately, this pandemic has been very politicized, and we have patients of all political leanings. so, a lot of them, you know [laugh], you have to, “okay, put your mask on, keep your mask on.”… like not all patients, uh, believe in the importance of masks. reconciling protecting oneself, enforcing institutional policy, and providing good care was “a tricky balance.” though one participant did not feel practice had changed significantly, most felt that the new and changing institutional policies and procedures significantly impacted patient care, particularly the use of personal protective equipment. for example, speech-language pathologists, whose work often involves the face, noted how wearing masks made providing the best care difficult, though they tried to adapt: in speech therapy, we do…articulatory modeling, with the patient needing to see our face or us needing to see the patient’s face. but then, for us needing to actually touch the patient’s face as well. and that is exceedingly difficult right now…. it’s hard to feel like you’re still providing the same level of care. all of the therapists noted that personal protective equipment, though acknowledged as necessary, posed challenges. the gowns, for example, were thick and hot. participants noted feeling “almost suffocated” and that it was more difficult for occupational therapists to assist patients with showering. the inpatient rehab participants, particularly speechlanguage pathologists who often saw some patients in group settings prior to covid-19, reported that group therapy was no longer possible. this resulted in more individual sessions and, thus, larger workloads. one participant noted that this not only made it harder to fit in all of their patients each day, but that it had an impact on the patients themselves: it is helpful for patients to be able to have some kind of connection to other patients who are actually going through the same thing that they’re going through or something similar. that is something that we have been unable to do, which has been sad. therapist thus acknowledged declines in commaraderie and socialization among patients upon the onset of covid-19. perhaps the biggest impact on patient care within the hospital unit was the institutional visitor policy. participants felt that the patient experience was impacted by not having regular in-person contact with family. one participant explained: being in an unfamiliar environment, going through what is likely a life altering event, and then on top of that, to have everyone interacting with you be almost this kind of faceless entity is a strange experience for patients. reduced socialization with family members and other patients was perceived as a negative change within the hospital unit. in addition, an essential part of therapy involves gathering accurate histories, obtaining information about homelife from family, and carrying out caregiver training in preparation for discharge. initially, all contact with family was via phone; however, even with caregivers being allowed to visit and attend training sessions, therapists felt challenged to provide the best care. one therapist recounted: a lot of times our patients with stroke have cogni[page 6] [qualitative research in medicine & healthcare 2023; 7:10823] article no nco mm er cia l u se on ly tive involvement, and so sometimes, they might not be the best historians, and when family is present, you can verify information, specifically home support, which is a big deal. other issues might come up that now we sometimes get surprised by on our family training day instead of kind of knowing them from the beginning. despite therapist preparedness for sessions, reduced rapport with patient caregivers resulted in additional challenges for the therapists during discharge preparation. many therapists described strategies to involve family members during sessions and family training despite visitor restrictions. participants facilitated video calls, at times using numerous devices simultaneously in order to include multiple family members. other therapists discussed practicing using technology during sessions with patients. one therapist stated: i have been trying to incorporate more of calling family members or video calling with family members as actual therapy [by] having the patient navigate on their phone to be able to call their family.... that’s been really, really beneficial and also great therapeutic exercise. using technology during intervention and training was not, however, always seamless due to internet connectivity challenges. a major change on the inpatient rehabilitation unit was the change in teams and scheduling. initially, treatment teams were developed to reduce exposure risk for therapists and patients. the teams provided increased communication between clinicians, as the same group was consistently working together. most patients were assigned to teams based on their primary medical diagnosis. some therapists felt treatment teams stifled their growth as clinicians, with one therapist reporting, “i’m starting to become a little pigeonholed, and i do miss working with different patient populations,” while others reported enjoying the opportunity to “specialize.” notably, an important aspect of the unit culture was the formal and informal contact with co-workers. before the pandemic, participants described eating lunch together, talking and providing support, working closely together in the therapy gym, and, on occasion, going out after work. not having this regular contact with co-workers and “taking care of each other” was experienced as “a huge blow.” however, participants reported that having some opportunities to talk about their challenges and stressors was invaluable. additionally, participants consistently noted how important it was to them that there was “a feeling of we’re all in this together” that “just knowing that the rest of the team is going through a lot of the same stuff” was comforting. finally, the support of management on the units proved to have a significant impact on participants’ experience, an overall buffering effect. participants described how management responded to concerns about the constant changes and potential for burnout by having more frequent meetings, asking more explicit questions about therapists’ mental health, and sending uplifting weekly emails thanking the therapy team for their hard work. personal factors participants were acutely aware of the exposure risks outside of work and were thus cautious about engaging in activities with family and friends who were not part of their household. this led participants to feel “on edge,” noting “if i get sick, then i could possibly infect an entire floor.” many noted the disconnect they felt with family and friends who did not have the same experience of the virus. one participant stated, “there’s kind of a strange disconnect that i feel sometimes with people who don’t work in health care, that their day-to-day experience is just so different than mine is right now.” for many, much energy went into “measuring the risk” of social encounters, and thus, they carefully monitored where they went, what they did, and who they saw. one participant stated that she often felt like “the covid police” as she tried to navigate family interactions because “it just seems like i’m the only one who still cares or sees it as an issue anymore because i see it every day, and people don’t.” participants chose to limit exposure and changed their routines accordingly. for example, some engaged in shopping online, while others shopped at “off hours.” some participants spent time outside with friends, but were careful about keeping their distance, while others decided to limit all exposure outside of work. like many people around the world, participants created opportunities to connect virtually with family and friends. while this was satisfying to some degree, the lack of physical contact was particularly challenging, especially for those who lived alone. as one participant noted: “there’s a yearning for more closeness than i can have. um, i have plenty of physical contact with patients…but you can’t hug your friends and have the same level of closeness.” for participants, covid-19 was ever-present, permeating both professional and personal lives. because of the stress and isolation of covid-19, many participants noted the importance of self-care strategies which served as buffers that took them away from thinking about covid-19. strategies included exercise routines, yoga, gardening, sleeping more, spending time with pets, and self-rewards or indulgences, often with food. one participant described making her car a covid-free zone where she listened to music or a podcast “just to avoid hearing on the news ‘covid, this covid that’ because it was just so overwhelming.” these self-care strategies provided the participants relief from the stressors of work and maintaining a constant state of hypervigilance. [qualitative research in medicine & healthcare 2023; 7:10823] [page 7] article no nco mm er cia l u se on ly discussion this study captured detailed descriptions of clinical rehabilitation practice during the covid-19 pandemic from physical therapists, occupational therapists, and speech-language pathologists using a qualitative descriptive design. in line with the socioecological framework (bronfenbrenner, 1977; bronfebrenner & morris, 2006), we identified four interrelated factors (sociopolitical, institutional, hospital unit, and personal) along with a respective set of stressors and buffers within each factor that collectively impacted therapists’ experiences. these factors, stressors, and buffers encapsulate a historically turbulent period in the history of the united states marked by the politicization of the pandemic, an intense presidential election season, and increased awareness of privilege and institutional racism (elias & paradies, 2021) among citizens. obtaining information about the experiences of rehabilitation therapists in the context of political, social, and medical unrest ultimately enriches our collective perspective of the covid-19 pandemic, which, until now, has predominantly featured insight from physicians and nurses. our cohort possesses several distinct features from other medical professionals. as stated previously, many of the participants practiced in an inpatient rehabilitation facility setting where productive collaboration between therapists, patients, and patients’ family members is paramount. therapists serve an integral role in cultivating an efficient patient transition from hospital to home by leading and overseeing patient and family/caregiver training. related discharge planning facilitated by therapists addresses patient care and therapeutic activities for home, exercise programming, coordination of outpatient rehabilitation services, and consideration of the patient’s home environment and available support system. social distancing guidelines, personal protective equipment availability and use, and hospital visitor restrictions significantly impacted the delivery of care across all medical professions. our findings underscore the profound impact of the covid-19 pandemic specifically on rehabilitation therapists. as discussed within bronfenbrenner’s socioecological model, we recognize numerous interactions between personal (individual), hospital unit (micro-), institutional (meso-), and sociopolitical (exoand macro-) factors, which reinforce the notion proposed by devakumar et al. (2020) that “the strength of a health system is inseparable from broader social systems that surround it” (p. 1194). we provide several examples below highlighting the degree of interconnectedness between these factors. for instance, hospital visitation restrictions (institutional factor) exposed underlying healthcare disparities (sociopolitical factor) in the inpatient rehabilitation facility. the absence of family members who typically serve as the primary advocates for non-english-speaking patients resulted in considerable challenges in discharge planning for participants, further exacerbated by the shortage of hospital interpreters. it is important to note widespread issues of medical interpreter shortages during covid-19 (herzberg, 2022) likely reflecting racial and ethnic disparities related to covid-19 (alcendor, 2020; knuesel, 2021). our participants, in turn, quickly gained proficiency in various technologies (an institutional and hospital unit stressor and buffer) to foster communication with patients’ family members. visitor restriction policies may have also contributed to participants’ feelings of disconnectedness (personal factor) toward friends and family that did not possess the same experience or urgency of the virus (sociopolitical factor) or experience the infiltration of the pandemic in both their personal and professional lives. these sentiments support past qualitative work illuminating therapists’ fears and frustrations with the pandemic outside of the hospital environment where relationships with family and friends were often strained (palacios-ceña et al., 2021b). relatedly, the formation of treatment teams to lessen exposure risk and the minimization of interactions among participants (hospital unit factor) contributed to their reported feelings of isolation. yet, their utilization of self-care strategies (a personal buffer) encompassing hobbies, exercise, time outdoors, and virtual communication with friends, colleagues, and family along with support from colleagues and management reduced these feelings of disconnect and isolation. past work examining the effect of the covid-19 pandemic on therapists’ mental health and well-being provide contrasting views. some studies reported elevated anxiety, depression, and reduced morale across therapist participants (hoel et al., 2021; yang et al., 2020) . others reported minimal adverse effects (tse et al. 2021) or the occurrence of positive feelings related to personal and professional growth embedded in an “emotional roller coaster” (palacios-ceña et al., 2021a). this study contributes a unique angle to this discussion. our participants identified similar stressors and fear as acknowledged in previous work (hoel et al., 2021; palacios-ceña et al., 2021a; yang et al., 2020), but they also recognized how policies occurring at both institutional and hospital unit levels alleviated stress. for instance, visitor restrictions were often an obstacle or stressor in discharge planning; however, visitor restrictions also served as a buffer by reducing traffic within the hospital, thus making the participants feel safer. hence, the stressors and buffers identified here were not mutually exclusive and sometimes posed contradictions within our socioecological framework in a similar manner to previous work that identified both negative and positive critical events among physical therapists (palacios-ceña et al., 2021a). our findings therefore resonate with past work employing quantitative (hoel et al., 2021; yang et al., 2020), qualitative (palacios-ceña et al., 2021a; palacios-ceña et al., 2021b), and mixed-methods (tse et al., [page 8] [qualitative research in medicine & healthcare 2023; 7:10823] article no nco mm er cia l u se on ly 2021) approaches by expanding on and bridging their respective findings. strengths and limitations a major strength of this work was the application of a socioecological framework during our analysis that appropriately highlighted the intersection of politics, social unrest, and hospital culture impacting rehabilitation practice and therapists’ experiences, which ultimately generated a more meaningful perspective. another strength of our work was the numerous strategies employed to enhance rigor during the interview, coding, and analysis processes. there are also limitations of this study that should be acknowledged. first, this study occurred at one universityaffiliated hospital in the southeastern region of the united states. the experiences and sentiments expressed by our participants do not necessarily represent those from therapists residing in other regions of the united states or even those residing in a similar geographical region but practicing in a different healthcare system. second, we want to emphasize that this study involved a single participant interview that occurred during the fall of 2020, a window of time that preceded the advent of vaccines and boosters in addition to the onset of delta and omicron covid-19 variants. the impact of these events on therapists’ experiences deserves additional study. relatedly, the average 45minute duration of each participant interview may have hindered additional sharing from participants; however, given the semi-structured nature of these interviews, the interviewers provided participants opportunities to share additional information about their experiences not otherwise addressed in the interview guide. lastly, practitioners were not asked to review transcripts or to provide input in the analysis and interpretation process, given the stress these practitioners were experiencing. implications and conclusions this work provides a number of implications for healthcare systems. our findings suggest that sociopolitical factors influenced policy changes at the institutional level, and these policy changes impacted rehabilitation therapists and their experiences during the covid-19 pandemic. participants in our study expressed an appreciation for transparency at the institutional and hospital unit levels along with consistent communication from leadership at these levels. these sentiments parallel a recent case report describing covid-19-related challenges in a pediatric physical therapy/occupational therapy department (greenwood et al., 2021). the authors noted the tremendous value of increased communication in the form of brief team meetings (i.e., huddles) held virtually to ensure attendance from hospital leadership, supervisors, therapists, and staff. not surprisingly, participant frustration arose when policy changes occurred without their knowledge or with little to no input from them. this was particularly evident in participants’ concerns with the quality of care for their non-english-speaking patients resulting from visitation restrictions, interpreter shortages, and increased reliance on technology vs. face-to-face contact with family members. therapists play a pivotal role in promoting safety and independence across areas of mobility, meaningful activities of daily life, and communication in the lives of their patients. fulfilling these job-related responsibilities typically requires close contact with patients for prolonged durations and collaboration with patients’ family members. policymakers at all levels should therefore understand therapists’ roles and responsibilities in patient care when formulating policies. work by pilbeam et al. (2022) reinforces this recommendation. the team acquired interviews from 14 healthcare workers in the united kingdom and found that covid-19 policies and guidelines were often poorly communicated to workers at the time of enactment and failed to account for their “contextual realities” (p. 2) and values as healthcare professions. policymakers thus have a responsibility to ensure that guidelines and policies passed at institutional and hospital unit levels adhere to the professional practice standards of rehabilitation therapists. however, we recognize the complexity of these circumstances as policies enacted at the institutional and hospital unit levels frequently occur in response to both local and national government mandates. our work also underscores the importance of camaraderie amongst participants, which aligns with past work detailing how therapists often relied on mutual support from one another and how they appreciated talking with their colleagues openly about issues related to the pandemic, since many of their friends and family could not relate to their experiences (palacios-ceña et al., 2021b). for our participants, the pandemic consumed both their personal and professional lives. having colleagues that understood the nature of their profession, the demands of inpatient rehabilitation practice, and the devastating reality of the covid-19 pandemic helped many of the participants. policies restricting these interactions had a negative effect and contributed to participants’ feelings of isolation. by focusing on a distinct clinical environment and a relatively understudied group of medical professionals, the experiences captured here deepen our awareness of the pandemic’s impact on healthcare workers and highlight the value of camaraderie and communication to promote therapist well-being. references adibe, b. 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(2020). factors associated with mental health outcomes among health care workers exposed to coronavirus disease 2019. jama network open, 3, e203976-e. https://doi.org/10.1001/jamanetworkopen. 2020. 3976 lambert, v. a., & lambert, c.e. (2012). qualitative descriptive research: an acceptable design. pacific rim international journal of nursing research, 16(4), 255-256. maslach, c., & jackson, s. e.. the measurement of experienced burnout. (1981). journal of organizational behavior, 2, 99113. https://doi.org/10.1002/job.4030020205 namasivayam-macdonald, a. m., & riquelme, l. f. (2020) speech-language pathology management for adults with covid-19 in the acute hospital setting: initial recommendations to guide clinical practice. american journal of speech-language pathology, 29(4), 1850-1865. https://doi. org/10.1044/2020_ajslp-20-00096 orrù, g., marzetti, f., conversano, c., vagheggini, g., miccoli, m., ciacchini, r., panait, e., & gemignani, a. (2021). secondary traumatic stress and burnout in healthcare workers during covid-19 outbreak. inernational journal of environmental research and public health,18(1), 337. https://doi.org/10.3390/ijerph18010337 palacios-ceña, d., fernández-de-las-peñas, c., florencio, l. l., de la llave rincón, a. i., & palaciosceña, m . (2021). emotional experience and feelings during first covid-19 outbreak perceived by physical therapists: a qualitative study in madrid, spain. international journal of environmental research and public health, 18(1), 127. https://doi.org/ 10.3390/ijerph18010127 palacios-ceña, d., fernández-de-las-peñas, c., palacios-ceña, m., de la llave rincón, a i, florencio, l. l. (2021). working on the frontlines of the covid-19 pandemic: a qualitative study of physical therapists’ experience in spain. physical therapy, 101(4), pzab025. https://doi.org/10.1093/ ptj/pzab025 pilbeam, c., tonkin-crine, s., martindale, a-m, atkinson, p., [page 10] [qualitative research in medicine & healthcare 2023; 7:10823] article no nco mm er cia l u se on ly https://doi.org/10.1191/1478088706qp063oa https://doi.org/10.1002/9780470147658.chpsy0114 https://doi.org/10.1371/journal.pone.0238666 https://doi.org/10.1080/20008198.2018.1562840 https://doi.org/10.1080/20008198.2018.1562840 https://doi.org/10.1080/20008198.2018.1562840 https://doi.org/10.1001/jamanetworkopen.2020.3976 https://doi.org/10.1001/jamanetworkopen.2020.3976 https://doi.org/10.1001/jamanetworkopen.2020.3976 https://doi.org/10.3390/ijerph18010337 https://pubmed.ncbi.nlm.nih.gov/?term=de-la-llave-rinc%c3%b3n+ai&cauthor_id=33375405 https://pubmed.ncbi.nlm.nih.gov/?term=palacios-ce%c3%b1a+m&cauthor_id=33375405 mableson, h., lant, s., solomon, t., sheard, s., & gobat, n. (2022). how do healthcare workers ‘do’ guidelines? exploring how policy decisions impacted uk healthcare workers during the first phase of the covid-19 pandemic. qualitative health research, 32(5), 729-743. https://doi.org/ 10.1177/10497323211067772 pocock, t., smith, m., & wiles, j. (2021). recommendations for virtual qualitative health research during a pandemic. qualitative health research, 31(13), 2403-2413. https://doi. org/10.1177/10497323211036891 saldaña, j. (2016). goodall’s verbal exchange coding: an overview and example. qualitative inquiry, 22(1), 36-39. https://doi.org/10.1177/1077800415603395 sandelowski, m. (2000). whatever happened to qualitative description? research in nursing & health, 23(4), 23342340. https://doi.org/10.1002/1098-240x(200008)23:4<334: :aid-nur9>3.0.co;2-g sandelowski, m. (2010). what’s in a name? qualitative description revisited. research in nursing & health, 33(1), 77-84. https://doi.org/10.1002/nur.20362 spoorthy, m. s., pratapa, s. k., & mahant, s. (2020). mental health problems faced by healthcare workers due to the covid-19 pandemic-a review. asian journal of psychiatry, 51, 102119. https://doi.org/10.1016/j.ajp.2020.102119 sriharan, a., ratnapalan, s., tricco, a. c., lupea, d., ayala, a. p., pang, h., lee, d. d. (2020). occupational stress, burnout, and depression in women in healthcare during covid-19 pandemic: rapid scoping review. frontiers in globobal women’s health, 1, 596690. https://doi.org/10.3389/fgwh.2020.596690 tse, t., roberts, e., garvie, j., sutton, e., & munro, a. (2021). the impact of covid-19 restrictions on occupational balance: a mixed method study of the experience of australian occupational therapists. australian occupational therapy journal, 69(1), 89-97. https://doi.org/10.3390/ijerph17103723 yang, s., kwak, s. g., ko e. j., & chang, m. c. (2020). the mental health burden of the covid-19 pandemic on physical therapists. international journal of environmental research and public health, 17, 3723. https://doi.org/10.3390/ijerph 17103723 world health organization (who). (2020, march 11). who director-general’s opening remarks at the media briefing on covid-19. https://www.who.int/director-general/speeches/ detail/who-director-general-s-opening-remarks-at-the-mediabriefing-on-covid-19 [qualitative research in medicine & healthcare 2023; 7:10823] [page 11] article no nco mm er cia l u se on ly layout 1 the boundaries between narrative and scientific knowledge are permeable, and both forms of reasoning arrive in packages that are inseparable aspects of the same thing – both frame and picture barbara czarniawska (1998)1 introduction the original definition of survivor describes the cancer patient as experiencing neither death nor cure, but rather, strugglingthrough inexact yet predictable stages of a deadly disease.1-3 meanings of breast cancer survivorship have gone through a stark metamorphosis in the last 50 years, ranging from a once private and stigmatized disease to contemporary disease discourse which evokes the cultural metaphors of fighting, war, heroism and virtue.4 such metaphors have fueled enormous public support of the breast cancer survivor identity. images of predominantly white, physically fit, upper middle class, heterosexual females who triumph over the disease by sheer optimism and willpower have overshadowed the stark reality that despite billions of dollars spent for breast cancer awareness marketing and initiatives for races for the cure and early detection, death rates for breast cancer have remained relatively static.5 today, as in 2005, 1 in 8 women in the u.s. will be diagnosed with breast cancer, and 1 in 6 of those diagnosed will die from the disease.5,6 the differences between representations of breast cancer awareness and survival statistics leave some breast cancer patients struggling to reconcile their own personal experiences with dominant images of survivorship. for instance, metastatic cancer patients consider current definitions alienating because of their own fears of the disease progressing in the context of the positive entailments of metaphors of fighting and beating the disease.7,8 one response to isolating messages on the part of metastatic breast cancer (mbc) patients has been that of seeking out patients who have been diagnosed as being at a similar stage in the progression of their cancer to discuss their shared concerns. increasingly, mbc patients are turning to online, peerled, cancer patient support groups as opposed to traditional online message boards or forums led by medical experts as places to connect with like-minded others. most mbc patients have unique physiological and psychosocial needs and experience the isolating effects of diagnosis and treatments on some level.9 this article examines one such online peer-to-peer mbc support group – the living room, tlr – to identify ways members’ shared discourse may represent organizational sensemaking in the it doesn’t make sense, but we do: framing disease in an online metastatic breast cancer support community ariane b. anderson department of communication, university of south florida, tampa, florida, usa abstract using weick’s sensemaking as a conceptual framework to investigate online discussions between members of a facebook group of metastatic breast cancer patients, and using thematic analysis to examine textual threads between group members, this research examines participants’ framing of cancer survivorship. participants in peer-to-peer disease support groups, which are not led by medical experts, communicate differently among themselves in order to cope with chronic and terminal illness. perceptions of survivorship of late stage patients versus early stage patients differ for a variety of reasons, with late stage patients understanding their illness trajectory more often as chronic and declining. this analysis identified three properties of sensemaking used by members to manage their disease: identity, retrospective, and enactment. results indicate that peer-to-peer online support group communication engenders distinct framing logics that members draw upon for group support as they manage a chronic and terminal disease. correspondence: ariane b. anderson, department of communication, university of south florida, 4202 e fowler ave, cis 1040, tampa, florida, usa e-mail: abanders@mail.usf.edu key words: metastatic breast cancer; sensemaking; online; identity; survivor. conflict of interest: the author declares no potential conflict of interest. funding: none. received for publication: 22 august 2017. revision received: 11 july 2019. accepted for publication: 11 july 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:68-75 doi:10.4081/qrmh.2019.7007 [page 68] [qualitative research in medicine & healthcare 2019; 3:7007] qualitative research in medicine & healthcare 2019; volume 3:68-75 no nco mm er cia l u se on ly service of deriving meaning from an often terminal disease experience. in the section that follows, i will review existing literature surrounding online disease support groups and sensemaking and justify the rationale for examining mbc patients’ understandings of their disease. literature review preece defines online support communities as any virtual social space where people come together to get and give information or support, to learn, or to find company.10 in online spaces cancer patients seek to gather information, feel connected socially, and increase their personal and collective sense making of their disease.11 moreover, the ubiquity and ease of access of online communication has enabled patients to seek informational and emotional support from countless blogs and social media support groups such as facebook, twitter, and reddit.12 online support groups for breast cancer patients began to flourish in the mid 1990s when disease focused groups began to form as places for information exchange and mutual support.13 researchers at that time were looking at how groups form and were mainly concerned with information control and how such information seeking would impact patient-provider understanding.13 sillence researched participants’ exchange of peer advice in an online breast cancer support group for ways that advice-giving impacts patient decision-making and shapes groups as resources for decision making.11 oh and lee examined how the exchange of computer mediated support influences patients’ sense of empowerment and its effects on patient-provider communication.14 while much of the research on communication in online health-related support groups has focused on participation, means of support, and health outcomes, less has examined online groups as spaces for alternative disease discourses – or socially desirable stories and outcomes.12,15,16 for instance, mbc participants of online support groups engage in freer expression between similar members because online contexts can function as liberating realms which allow for the telling of less socially desirable stories.17,18 benefits of online support group participation the anonymity permitted by online communication allows for participants in online support groups to discuss difficult topics that involve intense emotions regarding declining health and end of life issues.19 such online disclosures can contribute to patients’ greater sense of coping and overall wellbeing.19,20 moreover, in vilhauer’s study of a mixed-stage groups, mbc members described feeling more support from each other, because of seeing each other living well despite mbc which in turn made them feel more hopeful.21 patients describing their illnesses and impairments to each other in online support settings consists of an ongoing negotiation and renegotiation of their identity as patients and contributes to how they continuously frame their sense of self in relationship to others.22 framing reality/sensemaking the practice of framing experiences in organizational life to collaboratively derive meaning from them is a process conceptualized by karl weick in terms of sensemaking.23 it should be noted that tlr is a bounded (private, invitation only) community of mbc members. while not strictly an organization, which is a essentially a grouping or system that has hierarchal structure and pragmatic goals, tlr exists as a distinct, peer centered, group of members who have common characteristics and are motivated by a mission statement. in turn, weick’s sensemaking is connected to schutz’s concept of finite provinces of meaning by which schutz argued that it is the meaning of our experience and not the ontological structure of the objects which constitute reality.24 in other words, the commonsense world is really a sociocultural world wherein the consensus of reality is reached by the perceptions of participants using the affordances of language and symbols. metaphors are powerful examples of this, as they are sites for authoring of experience. as sontag argues in her classic work on illness as metaphor,4 the commonality of war and battle metaphors has meant that cancer is entangled in a social context of the entailments of winning and losing. we see war metaphors at work in cancer sensemaking in bio-medical discourse, in the narratives of patients and physicians alike, and in ways that are highly consequential to our understanding of the moral standing of the characters as well as the resolution of these narratives. the basic idea of sensemaking is that reality is an ongoing accomplishment that emerges from efforts to create order and make retrospective sense of what occurs. as weick maintains, sensemaking is no more than what the words imply, it literally is making something sensible.2 landqvist maintains that online illness support groups act as epistemic arenas, where chronically and terminally ill patients understand, negotiate, and renegotiate their disease identities.25 likewise, this study examines how an online support group of mbc patients create, sustain, and repair their own order. furthermore, this study of health-related online support groups fills an existing gap in health communication research in the areas of survivorship and organizational/group communication. i propose the use of weick’s seven characteristics of sensemaking that distinguish it from other explanatory methods of organizational sensemaking: i) grounded in identity construction; ii) retrospective; iii) enactive of sensible environments; iv) social; v) ongoing; vi) focused on and by extracted cues; vii) driven by plausibility rather than accuracy.2 these interrelated properties help identify not only what kinds of sensemaking is at play, but also how it is working and where it might fail. i applied them to the analysis of textual threads posted by members of tlrand online mbc support group. [qualitative research in medicine & healthcare 2019; 3:7007] [page 69] article no nco mm er cia l u se on ly research context this study is guided by the following question: in what ways do the members of tlr, understand and frame their disease? to address it, i collected textual exchanges between members of tlr found in the online platform of facebook. tlr is an invitation-only group of mbc patients and was formed as a sister group of booby buddies (stage 0-3 breast cancer). the facebook page for tlr reads, this is a private discussion group for ‘booby buddies’ with chronic breast cancer. other women who are in the group are committed to praying for these women and their needs. any woman who has mbc can join, but, for the purposes of protection of privacy and to enable more candid communication, prospective members, many of whom formally were ‘booby buddies’, must directly contact the founder and director, jan james, to join. the membership count during the time of data collection was, tlr, stage iv=166; boobie buddies, stage 0-3=866. tlr was created in response to former members of boobie buddies who had new or subsequent diagnoses of mbc and who felt that much of the discussion found on the booby buddies forum did not reflect the challenges and concerns that mbc patients were experiencing. for instance, in boobie buddies, discussions centered around questions and answers regarding newly diagnosed or earlier stages of cancer diagnosis, the trauma of hair loss, breast reconstruction, as well as participants’ celebratory announcements of completion of treatment or remission status. members with mbc were typically experiencing very different events regarding their own treatment and prognosis. for example, many of the impairments brought on by the disease, together with treatment side effects for stage iv cancer patients can be harsher, more uncertain, and can go in in perpetuity. members with mbc often cannot or do not want to undergo breast reconstructive surgery, and very few of the members of tlr can look forward to remission status. materials and methods data in order to analyze the data, i chose a systematic purposeful sampling.26 the criterion for each post was a minimum of two participants. the average post consisted of one thread and had 2-8 participants. an approximate of 207 posts by 57 members was accessed over a six-month period in 2017. participants represented diverse ages, length of survivorship, economic class, religious beliefs, sexualities, and race. analysis i analyzed the threads by way of qualitative content analysis, a method of analyzing written, verbal or visual communication messages.27 elo and kyngäs go on to state that through such analysis, it is possible to distil words into fewer content-related categoriesand make replicable and valid inferences from the data to their context. according to this procedure, i analyzed members’ textual threads to determine if any categories existed for the purpose of examining the themes through the lens of weick’s properties of sensemaking.2 i compared participants’ views contained in each of their short exchanges with each other and by taking initial analytic notes and memos, forms in the data began to take shape. i determined themes first, by open coding (where initial codes were provisional and grounded in the data) and next by axial coding (where synthesis and connections between words occurs), and finally by selective coding, where i determined broader themes. i compared the content of participants’ exchanges with each other and by taking initial analytic notes and memos, forms in the data began to take shape. three dominant properties of sensemaking were identified: grounded in identity construction, retrospective and enactive of sensible environments. the following analysis consists of members’ textual threads as examined through the lens of weick’s sensemaking in organizations. results making sense of illness grounded in identity construction tlr, as a virtual community, is a private group consisting of patients who have had biographical disruptions caused by their disease diagnoses.28 cancer is the it that is foundational to the dialogic events that occur in tlr. the direction between causality and events through which individuals think about themselves is contingent upon what one thinks it is and how it defines the self. in this multi-directional relationship of the definition of events and self within the setting of a late-stage disease community, members find themselves adapting to their own need for what erez and earley define as i) a need for a positive cognitive and affective state about the self; ii) motivation to see the self as efficacious and competent; and iii) the need for self-consistency – to experience coherence and continuity.29 the need for maintaining a consistent narrative of self is exemplified when new members are welcomed to the group. linda (who is introduced by tracy, one of the founding members) proceeds to describe her history of cancer and treatments and her preparation for participation in a drug trial, where an unexpected turn of events occurs with her subsequent return to chemo. many members respond with welcome, love and prayers, followed by emojis. these exchanges exemplify cues taken from the conduct of others where members are both shaping and reacting to this interactional environment. the continuation of a thread of short and similar greetings by the [page 70] [qualitative research in medicine & healthcare 2019; 3:7007] article no nco mm er cia l u se on ly members clarifies and confirms group identity. this clarifying, confirming transaction is what ring and van de ven refer to as an organization projecting itself onto its environment.30an immediate consensus of organizational identity is enacted, as each new member is welcomed, lengthy formalities are dispensed of, and issues of impairment are addressed. later in the thread, darlene gives a more lengthy reply: so sorry! sounds similar to my story. mine came back in my spine and lungs, was eating away at the vertebrae. i’m on a great treatment plan that’s working, praying they find the right one for you! here, darlene unhesitatingly identifies with linda’s diagnosis and condition as their notions of self are validated through articulations of knowledge of their bodies. darlene’s identification and validation reinforces a sense of coherence about the self in the midst of uncertain events and available treatments. the exchange shows the crucial ways in which sensemaking influences the approach that peers take when they begin initial processes of transacting with others.2 members’ sense of belonging is accomplished by transactional agreements of what is and is not talked about. in the same thread, a need for and collaboration of selfefficacy is demonstrated when bernadette posts that her chemo treatment of two years is causing a scarring of her lungs and that steroids are causing untenable side effects: bernadette: so it’s like, breathe and take a chance or continue until i would be on oxygen. i just ask for prayer that the right decisions are made. and by the way...only 1% of the people this happens to. ellen: i feel ya. i seem to get the 1% side effects too gemzar did it to my lungs: i said no to the steroids. i coughed for 4 months and couldn’t complete a sentence without wheezing. bernadette: i was afraid to not do the steroids. i couldn’t even walk up the stairs i had no air. my breathing test should have been around 80 and i was 38. it was horrible. ellen: it sucks so bad that the drugs keeping us alive can make us so feel horrible. ugh. ellen and bernadette are being both proactive and reactive in their exchange as they simultaneously shape and react in this give and take, which weick characterizes as reciprocal influence.2 in settings where mutability of the self is especially fluctuating, texts of the self are informed by texts of the other and environment. members facilitate a coherence and consistency as they make sense of what is going on around them based on the implications on the self. to illustrate, rather than turning the negative side-effects of cancer treatments into something positive, as is common, especially among healthy people and earlier stage breast cancer patients, mbc peers do not attempt to explain the pain away or offer advice or solutions. rather, they lend support in the form of empathetic comments and stories. the joint creation of members’ perceptions and meaning act as forms of self-actualization as each influences the other’s identity. restrospective sensemaking ethnomethodologists see sensemaking as an artifact of post diction, observation, and explanation.31 if people can know what they are seeing and doing only after the event or doing has passed, then, as winokur says, reality is in the past and our intellectualizations of moments take place post-visualization.32 if our perceptions are indeed short-term memory work, then meaning making is derived from already-elapsed experiences, apprehended, and brought into relief based on our attention to marked out moments.25 in other words, what we pay attention to is contingent on stimulus, action, and context: all of which are subjectively selected and in actuality hindsight based on our sensory and motor skills.33 many possible meanings are all going on at once which have to be synthesized by the perceiver. individual and organizational values help perceivers sort out what to attend to. accordingly, in discussions among metastatic cancer patients, one often finds an inclination to return to normalcy. clinicians and patients commonly refer to a new normal as adapting to the ever-changing events of living with a chronic or acute disease. participants’ negotiation to achieve a sense of normalcy is unique in that acutely/terminally ill people are conscious that theirs is not a normal experience and that the future is uncertain. therefore, the language used to affirm each other’s experience operates to achieve a form of homeostasis. a post in which shelby, a prominent member, describes a recent encounter in her oncologist’s office illustrates retrospective sensemaking at work: shelby: so this happened and i have had it on my mind. ten days ago while i was at the clinic getting fluids, i sat by in my usual area. a new gal was a few seats away and looking ever so ill. the thought crossed my mind to introduce myself and to wish her well, i didn’t. a few moments later her nurse is trying to get her to wake up by calling her name. before i knew it we were all moved to the other side of the room and dozens of hospital help came running. a temporary screen was put up as they worked on her. the nurses were outstanding checking on all of us. they worked on her for an hour as her family began to arrive. her name was —-. it just brought the reality of my situation too close. always say hi. teresa: what a sad story. i will surely make it a point to say hi to all when i go forchemo treatment. laura: wow. what an experience. life has a way of throwing reality at us in a brutal way sometimes. shelby’s phrase, always say hi, acknowledges that the future is not guaranteed to this immediate population of patients or by association, to tlr. the phrase captures the idea that existing in a state of uncertainty is a baseline [qualitative research in medicine & healthcare 2019; 3:7007] [page 71] article no nco mm er cia l u se on ly of normalcy for the metastatic patient. thus, the practice of cultivating and possessing an awareness that the next person to die could be you or someone close to you is another, more profound new normal. a collective designation of meaning is being derived from a particular kind of attention given to this event and is shaped by members responses to shelby’s story. the expression always say hialso acts as the stimulus to which laura’s response defines or shapes meaning. in so doing, laura’s selective attention frames this event as one that is particularly harsh for metastatic cancer patients to witness. meanwhile, others who have witnessed the event, may have another perspective, i.e. the nurses as emergency responders, non-patients as curious onlookers, etc. in each individual case, the retrospection that occurs is created through the kinds of meaning that are attached to the event. because of their shared reality, for tlr, shelby’s phrase provides a more urgent sense of immediacy, an intention toward, a necessary face-to-face communication that transcends the instrumental of everyday communication in clinical settings. ella ends the thread by responding: that would be so hard to watch. after my little reaction, i have tremendous respect for the nurses and all the medical team. yes definitely will say hi to those next to me. ella verifies members’ retrospective sensemaking by connecting her own responses to members creating meaning out of a brutal scene and to make visible the enactment of organizational identity in the future. enactment of sensible environments enactment, according to weick, is a making of that which is sensed. people use interpretation to explain things that are already there, sensemaking is used to explain how things got there to begin with; thus, action enables people to see what they think.34 action, individual and collective, is not separate from the construction of the environment in which an event occurs, rather, action and environment co-create each other. action contributes to the overall definition of what is understood to have taken place. because activity creates stimuli, action also creates both the constraints and opportunities that emerge from environments – all as a result of the interplay of subject and object. in tlr enactment occurs most typically in response to health status updates, which are at the heart of the group’s purpose. members routinely post changes in treatment regimens, discovery of new lesions and tumors, entrance to hospice care, or less often, news of remission. in response to such reports, participants offer textual support in the form of words and graphics; equally common is the offer of non-sectarian prayers. leanna announces in large, bolded text: leanna: 4 brain tumors. explains a lot. won’t tell kids until we have a plan – feeling broken. in this space of bad news, participants may imagine that they could have easily written the post about themselves. in response, members enact the meaning of this diagnosis through supportive language, emojis, and banners. there are few comments appearing to overtly prescribe actions or contain common understandings of how breast cancer patients are expected to think positive or to fight. instead, responses range from: so sorry; sorry this is so hard; my thoughts are with you!!!, to love you sister, god has a perfect plan for you and your precious family, xoxox; you and your family are in our prayers; you may not find the words, because there are no good words. but you will find the love. and the embrace. and the way to tell your kids. that is my prayer; and finally, i am praying there’s an option or availability or a chance to do a new drug trial drug something to help you i’m so sorry. respondents seem to be trying to refrain from saying things that will attempt to fix the problem; rather, they are creating new ways to think about the diagnosis without diminishing its impact on leanna. the way that both leanna and members are discussing this news demonstrates the relatedness of action and environment. the stimulus of the situation (news of the diagnosis) facilitates the actions (support), thus both producing new situations which cause new activities – all intersubjectively produced. members’ enactment of the environment changes the way they are thinking about the post as they are acting.35 we are all just walking each other home metaphorical meanings often emerge in response to loss of control and traumatic events. these meanings contain tacitly accepted organizational scripts. a co-creation of what has just been sensed is illustrated by a member’s spouse reporting that member’s transition in to hospice care. shelby, who regularly posts things such as always say hi, has entered hospice. her husband says: jack: ladies....this is shelby’s husband jack. shelby took a turn for the worse last nite and the hospice nurses are telling me she doesn’t have much time left. i wanted to tell you all thanks from the bottom of our hearts for being apart of this journey. you all meant so much to her and i will continue to pray for you all and ask for gods grace for each and everyone of you on your own journeys. xxx: prayers will be flooding your way throughout these difficult days. please keep us posted on our precious shelby’s progress to her heavenly home. our lives will never be the same for having known her. love and prayers, friend. may all of you feel the lord’s presence and comfort. xxx: so sorry, so sad... xxx: i’m so very sorry to hear this news. breaking my heart. thank you for letting us know jack prayers for you & your family [two red heart emojis, two prayer hands emojis]. [page 72] [qualitative research in medicine & healthcare 2019; 3:7007] article no nco mm er cia l u se on ly xxx: aw, i hate that. prayers, sweet and kind woman. xxx: jack, i’m so sorry. shelby is so sweet. i’ll be praying for her and your family. xxx: jack, thinking of you. shelby has been a pillar of strength, especially for us newly diagnosed. xxx: i’m beside myself. i am so sad, i thought the world of her. i was hoping to meet her sometime. i will bid her farewell for now, but we will meet again, i know. prays for the family. xxx: jack, prayers for comfort and peace for you and your entire family. shelby, you are such a sweet nice woman! this really breaks my heart. the world is losing one of its brightest lights. xxx: sending prayers and hugs to everyone. may you all find some comfort during this most difficult time [a red heart emoji]. xxx: a friend of mine often uses an expression that i love...prayers are flying up for you! [a red heart emoji]. amy: just in the last few weeks shelby used the phrase....we are all just walking each other home. thanks for being part of my walk shelby. xxxooo. typically, a greater number of members respond to these kinds of notifications; more than 50 responses follow – the majority expressing sadness and promises of prayers. of note is a post by amy who says, just in the last few weeks shelby used the phrase.....we are all just walking each other home. thanks for being part of my walk shelby. xxxooo. amy also posts a photograph of a cup with the inscribed words, we are all just walking each other home. the image captures a clearly active making of that which is sensed by the others. for these late stage patients, the symbols denote a virtual walking beside each other and that the natural trajectory toward a place where spirits and bodies will meet again is home. for now, members are organized together through and on this cyber-mediated platform. amy has designated shelby as one who is shepherding this group of cancer patients into a specific organizational meaning. collectively they are making real their understood meaning of death: one’s bodily exit from one space and entrance into the next and the unknowable but taken for granted beliefs of existence through which these patients conceptualize death. the drawn upon sensemaking in this online environment demonstrates that members are constrained by death but liberated by a hope of a place of reunion. at the same time, maybe not every member shares this perspective. lynn remarks, it means a bit something different to me, i think, but fitting. she was a dear. i love you, my fellow mester-sisters i hold you both very dear. lynn is a cancer patient and activist who regularly petitions the u.s. congress on behalf of mbc patients, and professes to be irreligious. she directs her comment specifically to her mester-sisters are several tlr members who are fellow activists. her post is an example of slippage, which occurs when organizational identity is potentially disputed, but dissonance is contained and maintained nonetheless. while lynn admits some disagreement with a heaven-bound perspective, as an active agent, she too is producing her own part of this environment.36 a pure influence of one subjectivity over another does not occur in this exchange. one member does not have absolute influence over another nor is the sensemaking of shelby’s impending death not divided or disputed; rather, it is relatable and reconciled. enactment of this particular group’s sensibility of their online environment can be summed up in relatings such as, ...i never react to you but to you-plus-me; or to be more accurate, it is i-plus-you reacting to you-plus-me.35 in this case, some member’s metaphorical understanding of end of life serves to reinforce identification with each other and provides an almost substantive form of comfort in the face of loss. discussion and conclusions sensemaking: tools to cope with uncertainty numerous qualitative studies of online peer-to-peer systems of support for the chronically and terminally ill have looked at the ways that patients use cyber-mediated communication as they cope with their diagnoses. most have focused on topics ranging from information seeking and sharing, to emotional and social support, to how peer-topeer interactions may impact patient-provider relations. few have examined the ways that chronically and terminally ill peer-to-peer online communities understand and frame their disease experience. this investigation into the online exchanges of mbc patients claims the use of distinct sensemaking by group members to frame their understandings of illness and disease. specifically, members’ meanings of identity, retrospective memory, and enactment of their group’s environment functioned as communal frames through which uncertainty, stemming from living with a deadly disease, was understood and managed. one of my key findings was that shared identity work was accomplished through members’ narrative storytelling, words of support, and a validation of group membership seen in the welcoming of new members. participants, as mbc patients, defined what they considered the it of the group to be their own understanding of the meaning of cancer survivorship; participants’ cancer identity was constructed and shaped through online posts and responses. among participants, there was an acceptance of the diagnosis as they readily identified with being mbc patients. likewise, they resisted common cheerful and positive pronouncements of, this too will pass, or kick cancer’s ass; these kinds of statements were almost nonexistent between their exchanges. the lack of pink ribbon language suggests that mbc patients construct notions of survivorship identity in alternate ways. [qualitative research in medicine & healthcare 2019; 3:7007] [page 73] article no nco mm er cia l u se on ly another facet of identity work resulted from collaborative self-efficacy. peers shared perceptions about drug and treatment side effects, impairment and validation of each other’s illness stories acted as a reciprocal tool, shaping and protecting their sense of self.36 connected to shared identity, retrospective memory occurred as members’ reflected on what a just say hi moment looks like for them – not only as onlookers but as mbc patients who, themselves, could be the subject of the story. members’ attention toward the narrated event brought into relief the meaning of seeing another patient against being a mere onlooker. this attention to identify with another is spurred by the uncertainty that mbc patients face daily. serious events such as witnessing the coding of a patient in a waiting room are framed as brutal reality, but also as events requiring a response (such as taking time to acknowledge others) because of a shared reality of suffering and death. the telling of this story and the responses to it served to frame members’ patient identity as well as one’s daily existence in uncertainty through the use of restrospective memory. the final finding, enactment, was produced by members who made what they saw, to, as weick says, see what they think.23 namely, tlrmembers’ response to bad news is a discursive creation of the organizational script we are all just walking each other home. participants, in making sense of a peer’s imminent death, collectively agree upon the use of the metaphor in order to name what is happening to each of them. this agreed upon representation serves as an aspect of group and mbc identity. while some did not subscribe to religious beliefs, there was a relatability found in members enactment of or a form of running with a co-created metaphor. i draw a number of implications from the findings in this study. first, tlr as an online, peer-to-peer, social media support community of metastatic cancer patients is one where the seeking of psychosocial support outweighs informational or instrumental support. collaborative identity work, while not explicitly stated, was clearly a central tenant that served to normalize member’s identities within the scope of discussions about diagnoses, treatments, behaviors, or outcomes. second, members did not subscribe to a widely accepted meaning of survivor – the cheerful, victorious, and overcoming pink warrior. mbc patients in this forum eschewed optimistic images of the survivor identity; they intentionally constructed alternative ideas of survivorship. members usually refrained from giving advice or offering hope for recovery. not having any easy answers or the ability to fix other’s dilemmas provided an environment where members produced support through what kaufman and whitehead describe as reciprocal empathy where the sharing of empathy produces strong supportive effects.37 a potential by-product of reciprocal empathy is a sense of normalization where peers, having shared similar stories, strengthen their disease identities by doing emotional identity work together. finally, the meaning behind organizational/group membership was immediately understood. new members were welcomed, not with purely instrumental communication, but primarily with solidarity language. tlr members accept that they have stock in not only what the it is that defines the organization, but also the identity that is bound up with that it. in this group, cancer is the it– indeed their identity; yet the disease identity that is adopted is not as straightforward as the word implies. members rarely, if ever, invoked pink metaphors, preferring instead to adopt more blunt discussions of their experiences. online platforms of peer-to-peer disease support communities continue to grow in popularity as social spaces where issues of chronic and late stage disease are expressed and support is actualized. interactions between members who are chronically or terminally ill are vital to daily coping because of the sensemaking facilitated by cyber-mediated communication. tlr’s members’ understandings of what i identify as shared identity, retrospective memory, and enactment of their environment enables the group’s co-created knowledge to flourish, thus, as i argue, making an impact on their very experiences of the disease. further studies should investigate how that knowledge impacts overall health outcomes, specifically for metastatic cancer patients. additionally, in light of newer marketed therapies (such as ibrance, letrizole and verzinio) and the promises of immunotherapies, mbc patients may be experience longer prognosis’ and therefore contend with chronic disease differently. it behooves researchers and clinicians to study the ways that patients among themselves are understanding, meeting, and coping with these potential changes. references 1. czarniawska-joerges b. a narrative approach to organization studies. thousand oaks, ca: sage; 1998. 2. weick ke. sensemaking in organizations. thousand oaks, ca: sage publications; 1995. 3. mullan f. seasons of survival: reflections of a physician with cancer. n engl j med 1985;313:270-3. 4. sontag s. illness as metaphor. london: penguin books; 2002. 5. american cancer society. breast cancer facts and figures 2005-2006. atlanta: american cancer society; 2005. available from: https://www.cancer.org/content/dam/cancerorg/research/cancer-facts-and-statistics/breast-cancer-facts-a nd-figures/breast-cancer-facts-and-figures-2005-2006.pdf 6. american cancer society. breast cancer facts and figures 2017-2018. atlanta: american cancer society; 2017. available from: https://www.cancer.org/content/dam/cancerorg/research/cancer-facts-and-statistics/breast-cancer-facts-a nd-figures/breast-cancer-facts-and-figures-2017-2018.pdf 7. kaiser k. the meaning of the survivor identity for women with breast cancer. soc sci med 2008;67:79-87. 8. helgeson vs. survivor centrality among breast cancer survivors: implications for well-being. psycho-oncol 2011;20: 517-24. [page 74] [qualitative research in medicine & healthcare 2019; 3:7007] article no nco mm er cia l u se on ly 9. ussher j, kirsten l, butow p, sandoval m. what do cancer support groups provide which other supportive relationships do not? the experience of peer support groups for people with cancer. soc sci med 2006;62:2565-76. 10. preece j. sociability and usability in online communities: determining and measuring success. beh inform tech 2001;20:347-56. 11. sillence e. giving and receiving peer advice in an online breast cancer support group. cyberpsych beh soc n 2013;16:480-5. 12. wright kb. communication in health-related online social support groups/communities: a review of research on predictors of participation, applications of social support theory, and health outcomes. rev commun res 2016:4;65-87. 13. sharf bf. communicating breast cancer on-line: support and empowerment on the internet. women health 1997;26:65-84. 14. oh hj, lee b. the effect of computer-mediated social support in online communities on patient empowerment and doctor– patient communication. health commun 2012;27:30-41. 15. sandaunet a-g. a space for suffering? communicating breast cancer in an online self-help context. qual health res 2008;18:1631-41. 16. frank aw. the wounded storyteller: body, illness, and ethics. chicago: university of chicago press; 2013. 17. bar-lev s. “we are here to give you emotional support”: performing emotions in an online hiv/aids support group. qual health res 2008;18:509-21. 18. rier da. internet social support groups as moral agents: the ethical dynamics of hiv status disclosure. sociol health ill 2007;29:1043-58. 19. coulson ns, buchanan h, aubeeluck a. social support in cyberspace: a content analysis of communication within a huntingtons disease online support group. patient educ couns 2007;68:173-8. 20. shim m, cappella jn, han jy. how does insightful and emotional disclosure bring potential health benefits? study based on online support groups for women with breast cancer. j commun 2011;61:432-54. 21. vilhauer rp. ‘them’ and ‘us’: the experiences of women with metastatic disease in mixed-stage versus stage-specific breast cancer support groups. psychol health 2011;26:781-97. 22. kingod n, cleal b, wahlberg a, husted gr. online peerto-peer communities in the daily lives of people with chronic illness. qual health res 2016;27:89-99. 23. weick ke. enacted sensemaking in crisis situations. j manag stud 1988;25:305-17. 24. schutz a, the phenomenology of the social world. new york: northwestern university press; 1967. 25. landqvist m. sense and sensibility – online forums as epistemic arenas. discourse context media 2016;13:98-105. 26. schwandt ta. qualitative inquiry: a dictionary of terms. thousand oaks, ca: sage; 1997. 27. elo s, kyngas h. the qualitative content analysis process. j adv nurs 2008;62:107-15. 28. bury m. chronic illness as biographical disruption. sociol health illn 1982;4:167-82. 29. erez m, earley pc. culture, self-identity, and work. new york: oxford university press; 1993. 30. poole ms, angle hl, van de ven ah, eds. research on the management of innovation: the minnesota studies. new york: harper & row; 1989. 31. starbuck wh, nystrom pc. why the world needs organizational design. org industr dev 1982;6:3-17. 32. winokur j. zen to go. new york: new american library; 1989. 33. strauss al. the social psychology of george herbert mead. chicago: university of chicago press; 1962. 34. lincoln is. organizational theory and inquiry: the paradigm revolution. beverly hills: sage publications; 1985. pp 106-136. 35. follett mp. creative experience. new york: longmans, green; 1930. 36. mathieson cm, stam hj. renegotiating identity: cancer narratives. sociol health illn 1995;17:283-306. 37. kaufman s, whitehead ka. producing, ratifying, and resisting support in an online support forum. health (london) 2018;22:223-39. [qualitative research in medicine & healthcare 2019; 3:7007] [page 75] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2020; 4:9700] [page v] i have no doubt that the ongoing covid-19 pandemic has made us “nicer”,1 more compassionate, and aware of the suffering of others. it has forced our eyes open to the many preexisting social injustices that we had managed to ignore or push to the side, and the dire need for dramatic changes to social inequalities that perhaps before now we could say did not concern us. the human tragedy of covid-19 (which is the subject of our next special issue guest edited by physician, author and poet lodovico balducci) has connected our bodies to other bodies notwithstanding the mandates of social distancing. it is no accident that the righteous rage of black lives matter over the brutal violence inflicted over decades by the state on people of color overlapped the images of physical wreckage of coronavirus. both speak to what foucault understood in terms of biopower, “a power to foster life or disallow it to the point of death”,2 or the ultimate political sovereignty. such is the power of healthcare in the united states, i would argue, inasmuch as bodies are classified, measured, assessed, enabled and constrained by the politics of health and illness. for, as susan sontag3 called attention when discussing cancer and hiv-aids, illness is political through and through. during her time as a cancer patient, sontag found that her body had become metaphor, a cultural and historical site of signification for cancer as a matter of moral failure, defect and shaming, social interaction and stigma beyond any notion of neutral medical treatment. by way of careful qualitative approaches, the four articles in this issue research the experience of illness, its creation in healthcare dynamics and how research can act as a warrant for the social validation of the illness experience as situated corporeal narration, speaking truth to biopower. what the authors examine are not crises in the sense of experiences that make the news, but as everyday tragedies of bodies in “extreme distress or sorrow”:4 chronic and degenerative illness, end of life decisions, the burden of treatment, and the pitfalls of physical pain in living with parkinson’s disease and connected to the duodopa pump,5 chacón gámez and andorno note that we are living longer with chronic conditions, like parkinson’s disease (pd) terminal conditions, and that these conditions are liminalities that exist beyond language. while the pump is a technology that manages the disease, the authors examine the experience of pd as it is mediated multimodally,6 in both narrative interviews and drawings of newly diagnosed patients. we find that the drawings are signifiers by signifying bodies about the body, its affective tensions and physical sensations, represented by changing colors and lines. much like the images of schizophrenia drawn by those diagnosed by the condition,7 the drawings of pd patients allow an understanding of the transformative complexities of the illness experience. moving to another difficult aspect of illness, in care workers’ experiences discussing financial issues with families facing end-of-life decisions hopeck8 studies the accounts of families and care workers –nurses, patient advocates, social workers, and clergy—about how to “afford” terminal care for their loved ones. this term has a double meaning, for finances and emotions are enmeshed in the biopower of healthcare. in a jarring confession, a family member tells of the double bind of keeping their loved one alive to retain their social security payment that would be necessary to afford a costly funeral. when time and money are running out, life and death are equally precious, and yet ironically a matter of tragic calculation. hopeck’s work inscribes the healthcare debates upon our bodies. in it’s long-term, well it’s for life basically: understanding and exploring the burden of immunoglobulin treatment in patients with primary immunodeficiency disorders9 jones and her colleagues attach the term “burden” to what they aptly call “the work of being a patient” (p. 118).9 as a chronic condition, immunodeficiencies require editor’s introduction. qualitative research in medicine and healthcare: the (politics of) the illness experience mariaelena bartesaghi university of south florida, tampa, florida correspondence: mariaelena bartesaghi, associate professor, communication, university of south florida cis 1040, 4202 e. fowler ave, tampa, fl 33620, usa; editor-in-chief, qualitative research in medicine and healthcare. e-mail: mbartesaghi@usf.edu received for publication: 22 february 2021. accepted for publication: 22 february 2021. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:v-vi doi:10.4081/qrmh.2020.9700 qualitative research in medicine & healthcare 2020; volume 4:v-vi no nco mm er cia l u se on ly constant watchfulness, which the pandemic has at least allowed the rest of us to appreciate. though immuglobin treatment is available, receiving it is a mixed bag of gratitude and commitment on the part of patients. as someone with a chronic and disabling condition, this is something i can understand, and is in fact captured by the oxymoron “pain management.” chronic pain is, in fact, unmanageable, and management often requires that one go on disability, to have the time to devote to its management. as graboska and her co-researchers aptly claim, pain is a problem. and it is a political problem. an ethnographic study of opioid use disorder in rural maine: the problem of pain,10 is an examination of patient experiences with suffering.11,12 this suffering is sensate, in the sinews of the body, but it is also affective the matter of medical stigma, and the biopolitics of criminalization of opioid use disorder (oud). most physicians do not understand chronic pain past addiction to opioids, and the prescription of suboxone to treat both addiction and pain. though i have tried suboxone for pain, it did not work for me; it almost killed me. this is because i did not, in fact, have oud to the point that i could tolerate suboxone. the irony! though oud is decriminalized in the united states, the stigma of a suboxone prescription remains, and for many, like me, opioids barely touch pain. studies like this that listen to the actual experience of patients can open those who treat pain to understand the complexities of pain and the multifaceted pain of those who suffer. i am a character in one of those small tragedies and my everyday story is one about the burdens of being a patient as well as a human being who suffers. because of this, i am no longer able to be the editor-in-chief of this wonderful journal. another body will continue my work, your work, the work of qualitative research in medicine and healthcare in examining, validating, and ultimately speaking of the experiences of those in these pages. references 1. moffitt m. is the covid-19 pandemic making us nicer? signs of civility in pacifica, sfgate, april 13; 2020. available form: https://www.sfgate.com/local/article/is-thecovid-19-pandemic-making-us-nicer-signs-15193385.php 2. foucault m. part five: right of death and power over life. in the history of sexuality volume 1: an introduction. trans. robert hurley. new york: vintage books; 1990: p. 38. 3. sontag s. illness as metaphor & aids and its metaphors. picador; 2001. 4. oxford dictionary. available from: https://www.lexico.com/ en/definition/tragic 5. chacón gámez ym, andorno nb. living with parkinson’s disease and connected to the duodopa pump: a qualitative study. qual res med healthcare 2020;4:95-106. 6. jewitt c. routledge handbook of multimodal analysis. 2nd ed. routledge; 2016. 7. barnes s. artistic teen illustrates her hallucinations to cope with schizophrenia. mymodern met; 2017. avaible from: https://mymodernmet.com/schizophrenia-drawings/ 8. hopeck p. care workers’ experiences discussing financial issues with families facing end-of-life decisions. qual res med healthcare 2020;4:107-116. 9. jones gl, hajdukova eb, hanna e, et al. it’s long-term, well it’s for life basically: understanding and exploring the burden of immunoglobulin treatment in patients with primary immunodeficiency disorders. qual res med healthcare 2020;4:117-131. 10. grabowska w, holden s, wayne pm, kilgore k. an ethnographic study of opioid use disorder in rural maine: the problem of pain. qual res med healthcare 2020;4:132.145. 11. scarry e. the body in pain: the making and unmaking of the world. new york: oxford university press; 1985. 12. van ommen c, cromby j, yen j. the contemporary making and unmaking of elaine scarry’s the body in pain. subjectivity 2016;9:333–42. [page vi] [qualitative research in medicine & healthcare 2020; 4:9700] editorial no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2018; 2:7062] [page 55] introduction unintended pregnancy during adolescence is a persistent global public health problem and direct contributor to maternal mortality in sub-saharan africa.1,2 complex individual, sociopolitical, and health systems issues preclude widespread effective contraceptive use among young african women.1-4 in ghana, low contraceptive use rates continue despite fairly liberal family planning (fp) laws and access to services compared to other developing countries.4-6 as much as 42% of young ghanaian women experience an unmet need for fp even though 77% report access to modern contraception.4 while structural and systems-level barriers to adolesbad girl and unmet family planning need among sub-saharan african adolescents: the role of sexual and reproductive health stigma kelli stidham hall,1 abubakar manu,2 emmanuel morhe,3 vanessa k. dalton,4 sneha challa,4 dana loll,4 jessica l. dozier,4 melissa k. zochowski,4 andrew boakye,5 lisa h. harris4 1department of behavioral sciences and health education, rollins school of public health, emory university, atlanta, usa; 2school of public health, university of ghana, accra, ghana; 3university of allied health and sciences, ho, ghana; 4university of michigan, women’s hospital, ann arbor, usa; 5komfo anokye teaching hospital, kwame nkrumah university of science and technology, kumasi, ghana abstract adolescent pregnancy contributes to high maternal mortality rates in sub-saharan africa. we explored stigma surrounding adolescent sexual and reproductive health (srh) and its impact on young ghanaian women’s family planning (fp) outcomes. we conducted in-depth, semi-structured interviews with 63 women ages 15-24 recruited from health facilities and schools in accra and kumasi, ghana. purposive sampling provided diversity in reproductive/relationship/socioeconomic/religious characteristics. using both deductive and inductive approaches, our thematic analysis applied principles of grounded theory. participants described adolescent srh experiences as cutting across five stigma domains. first, community norms identified non-marital sex and its consequences (pregnancy, childbearing, abortion, sexually transmitted infections) as immoral, disrespectful, and disobedient, resulting in bad girl labeling. second, enacted stigma entailed gossip, marginalization, and mistreatment from all community members, especially healthcare workers. third, young sexually active, pregnant, and childbearing women experienced internalized stigmaas disgrace, shameand shyness. fourth, non-disclosure and secret-keeping were used to avoid/reduce stigma. fifth, stigma resilience was achieved through social support. collectively, srh stigma precluded adolescents’ use of fp methods and services. our resulting conceptual model of adolescent srh stigma can guide health service, public health, and policy efforts to address unmet fp need and de-stigmatize srh for young women worldwide. correspondence: kelli stidham hall, department of behavioral sciences and health education, rollins school of public health, emory university, 1518 clifton road, ne, gcr 560, atlanta, ga 30322, usa. tel.: 404.727.8741. e-mail: kelli.s.hall@emory.edu key words: sexual and reproductive health; stigma; adolescents; contraceptive use; family planning service use; conceptual model; sub-saharan africa. contributions: ksh, em, am, vkd, ra all conceived of the project initially and designed the study methods and procedures, with additional input from lhh. mkz, ab, sc, dl, jd led/conducted fieldwork, data collection and actively participated in analysis, with oversight from ksh, am, em. all authors participated in data interpretation and writing the manuscript. ksh drafted the first version of the manuscript and all coauthors provided substantial revisions and feedback, with subsequent revisions by ksh. all authors have approved the final version prior to submission. ksh confirms full access to all aspects of the research and writing process and takes final responsibility for the manuscript. conflict of interest: vkd is compensated as an expert witness for bayer pharmaceuticals in intrauterine device litigation. all other authors have no potential conflicts of interest to disclose. funding: this work was supported by the society of family planning research fund award #sfprf8-1, the national institute of child health and human development (nichd) #1k01hd080722-01a1 (ksh), nichd #k12hd001438 (for ksh while she was at the university of michigan, pi johnson), and awards from the university of michigan’s african social research initiative and office of the vice president of research. funding sources had no involvement in study design, in the collection, analysis, and interpretation of data, in the writing of the report or in the decision to submit the paper for publication. ethical approval: the study was approved by the institutional ethics review boards of the ghana health services, university of ghana, kwame nkrumah university of science and technology, and university of michigan. acknowledgements: the authors would like to thank richard adanu md mph, university of ghana school of public health, accra ghana. received for publication: 10 september 2017. revision received: 15 april 2018. accepted for publication: 24 april 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright k. stidham hall et al., 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:55-64 doi:10.4081/qrmh.2018.7062 qualitative research in medicine & healthcare 2018; volume 2:55-64 no nco mm er cia l u se on ly cent contraceptive method and fp service use in sub-saharan africa have been described, less is known about the role of social stigma occurring with the various dimensions of adolescent sexual and reproductive health (srh) (i.e. sexual activity, pregnancy, childbearing, abortion, sexually transmitted infections (stis), contraception and fp service use).3,4,7-19 sociocultural and religious norms that frame sex and its consequences as immoral and problematic may mark or taint sexually active adolescent females within their communities, leading to subsequent shame, mistreatment and stigma.10-23 however, whether social stigma may preclude the use of fp methods and services and contribute to adverse srh outcomes has not been well studied. moreover, adolescent (and unmarried) women have often been neglected in fp and in stigma research, even though the consequences of stigma, unintended pregnancy, and unsafe abortion for this group can be the most severe.1-3 stigma is a complex, contextual, dynamic process that marks an individual for an attribute that violates social expectations and is devalued culturally.20,21 stigma, as goffman has described, deeply discredits and transforms people from whole individuals to tainted, discounted ones.20while over the last 50 years researchers have built upon goffman’s definition, the perception of negative characteristics and global devaluation of the possessor are two definitions of stigma typically shared across disciplines.20,21 stigma has also been defined as labeling, stereotyping, discrimination, separation, and loss of social status, social networks, and self-esteem, that co-occur in a context in which power is exercised, and which can result in negative health and social outcomes.22,23 the stigma concept can encompass multiple statuses, identities, and characteristics at the individual level and at the structural level.22,23 in srh, stigma research has largely focused on hiv and aids.24-26 findings from these studies have documented a profound impact of stigma on the social status, mental health, and quality of life of women living with hiv and on their utilization of hiv and antenatal health services.24 other research has focused on stigma specifically occurring with sexual orientation27,28 and mental health conditions.28-30 collectively, qualitative and quantitative stigma studies have resulted in some shared dimensions of the stigma concept as it may relate to health and wellbeing, two of which represent the overwhelming focus of researchers and measurement. internalized stigma, or self-stigma, has been conceptualized as the subjective perception of being devalued and marginalized, which directly affects a person’s sense of self-esteem and level of distress (internalized stigma mental illness).25,26,29 enacted stigma, often used interchangeably with discrimination, has been conceptualized as the negative acts that result from stigma and serve to devalue and reduce the life chances of the stigmatized).23,25,28 while these conceptualizations have been used in a few studies on abortion stigma,31,32 research to date has not formally considered stigma within a broader srh and fp context. nor have studies formally investigated a more comprehensive set of dimensions comprising stigma, beyond enacted and internalized stigma, that may relate to young peoples’ srh perceptions and experiences, especially in sociocultural contexts like ghana. in our own prior qualitative analysis of data from this same cohort of young ghanaian women,33 participants alluded to lived experiences which we believe support a need for a more nuanced understanding of stigma as a potentially unique phenomenon. taking a broad and initial perspective using a grounded theory approach, we previously found that influences operating at the community and macro levels of young women’s environments, including unaccepting social, cultural and religious norms around premarital sexual activity, pregnancy, and abortion, shaped fp decisionmaking and behaviors.33 thus, building upon that work, we further explore the sociocultural context of adolescent srh in ghana, specifically and more comprehensively considering the potential of srh stigma and its impact on young women’s contraceptive method and fp service use. methods we conducted in-depth, semi-structured interviews with 63 women ages 15-24 years in accra and kumasi, ghana. we used a community-based cluster sampling technique to select five ghana health service (ghs) facilities and five senior high schools within the ghana educational service (ges) across large, culturally-diverse sub-metro regions in each major city. this sampling frame provided heterogeneity in types of clinics (antenatal, postnatal, fp, adolescent, abortion, child welfare) and schools (public, co-education, female only) and the populations they serve (i.e. reproductive, relationship, socioeconomic, religious characteristics). the study was approved by the institutional ethics review boards of the ghs, university of ghana, kwame nkrumah university of science and technology, and university of michigan. we obtained parental consent waivers from all ghanaian irbs given the sensitive nature of our survey and to ensure confidentiality. eight ghanaian research assistants (ras), who were trained by our ghanaian pis and ghanaian and u.s. research program managers, approached women at recruitment sites, provided study information, invitations to participate, and obtained informed consent. we offered a modest gift (telephone card $7 cedis) as compensation for our participants times – an amount that was recommended to be appropriate and non-coercive by our well-established ghanaian research team and approved by our ghanaian and u.s. institutional review boards. ras conducted interviews in private offices using semi-structured interview guides. guides were informed by a comprehensive literature review on stigma and its measurement and key known domains (i.e. enacted and internalized stigma) [page 56] [qualitative research in medicine & healthcare 2018; 2:7062] article no nco mm er cia l u se on ly described above, relevant codes and themes from our prior modified grounded-theory guided qualitative analysis (e.g. social norms) and related studies on the social context of adolescent srh.33-35 this all provided a foundational framework to organize our more focused, indepth analysis and findings and account for new domains and dimensions of stigma that emerged here. interviewers elicited information about sociodemographics, health, reproductive, and contraceptive histories, srh knowledge/attitudes, and perceived community norms/experiences with sex, pregnancy, childbearing, abortion, stis, contraception, and fp services. we probed for perceptions and experiences (participant’s own and/or of women in their communities) related to: i) circumstances/decision-making around sexual initiation and/or pregnancy; ii) health and social consequences; iii) changes in life goals; iv) healthcare. topics moved from less to more sensitive to enhance rapport and validity. guides were pre-tested in the field to assure clarity and comprehension. interviews, ranging from 20 to 90 minutes (depending upon level of sexual experience), were conducted in english or local languages (twi, ga), digitally recorded, transcribed verbatim, and translated by ghanaian team members when needed. our thematic analysis used an inductive, modified grounded theory approach.36,37 strauss and corbin define grounded theory as a methodology for developing theory that is grounded in data systematically gathered and analyzed.37 theory may evolve initially during the research process and also, if existing theories seem appropriate to the area of investigation, then these may be elaborated and modified as incoming data further inform them.37 in our case, our analysis was theory generating but was also informed by preexisting themes and codes from our initial qualitative analysis, the broader literature on the social context of adolescent srh literature, pre-established stigma domains the stigma literature review, and healthrelated stigma conceptualizations. new codes that arose from participants’ language and discourse which emerged here were used to inform and refine a new working model of adolescent srh stigma. initially, two ghanaian research assistants in each city working to collect data in the field met regularly with our study principal investigators (pi) (in person with ghanaian pis and via skype with u.s. pi) and our ghanaian and u.s. program managers to translate and then review a subset of early collected transcripts, discuss potential emerging codes, and revise semi-structured interview questions as needed on an ongoing basis throughout the study, for a constant comparative approach. once data collection was complete, two or more team members then independently reviewed all transcripts together. we held weekly team meetings to review selected transcripts together, decide upon final codes and code definitions, and identify themes and sub-themes. through an iterative process, we developed and refined a formal codebook. two members then coded all transcripts. weekly meetings enabled the team to resolve discrepancies and discuss bias and selectivity. regular conversations between u.s. and ghanaian team members throughout all phases of data collection and analysis provided opportunities to address reflexivity, share preconceptions, consider competing conclusions, and establish metapositions. data were managed and analyzed using dedoose, a web-based qualitative data software package that we chose for this project given its high level of security, easy access, user friendliness, and ease of collaboration. results table 1 presents sample characteristics of the 63 adolescent and young adult ghanaian female participants in our study. findings about participants’ perceptions and experiences related to adolescent srh stigma, which were similar across the continuum of srh experiences and emerged as what we interpret in terms of five distinct but interrelated stigma domains or themes (table 2), are presented below. community norms overwhelmingly, participants discussed unsupportive, unaccepting and negative community attitudes toward all dimensions of adolescent srh – sexual activity first and foremost, but also its consequences (pregnancy, childbearing, abortion, stis, contraception and fp service use). srh experiences, especially outside of marriage, were considered immoral, disobedient, disrespectful, and in direct conflict with religious teachings (premarital sex was considered immoral) and established norms for acceptable adolescent and female behavior. a 16-year-old student from kumasi commented, doctrines state sex is really bad at this stage… from the bible, when you are not married, it is not advisable. you will spoil yourself, easily get pregnant, sexually transmitted diseases, and illnesses. some participants even believed that adolescent sexual activity and pregnancy were illegal behavior. some said it was not at a good time (to get pregnant as an adolescent). others too said although the pregnancy is at a bad time, i cannot abort it. so i gave birth. they said pregnancy at the age of 19 years is not good. some too said it was written in constitution that, for a woman to get pregnant, she has to be 18 years and over. so if at the age of 19 i am going to give birth, it is okay. but people talked a lot about the time i got pregnant and they had different opinions. but they later accepted the pregnancy (previously pregnant young adult family planning clinic patient in accra). additionally, adolescents were believed to be of a tender age, lacking readiness and maturity for sex and its consequences, and unable to manage the emotional, fi [qualitative research in medicine & healthcare 2018; 2:7062] [page 57] article no nco mm er cia l u se on ly nancial, and social responsibilities required. readiness was also described as educational attainment, and sex was a competing activity. sex and pregnancy could result in forfeiture of students’ goals. one participant’s comments illustrated this idea. when you are coming up and you don’t want to be involved in sex or immoral acts, then you have to concentrate on your education. or when your parents tell you to do something for them, you have to focus on what you have been told to do. if you want to (have sex), you can do it after (you finish school) (22-yearold previously pregnant fp clinic patient in accra). the most consistent, vivid description of community norms around adolescent srh was through stories of bad girl. this language, used by nearly all participants, referred to labeling of adolescents with sex, pregnancy, childbearing, abortion, and fp experiences as bad, spoiled and tainted. bad girl could also extend to families and communities, leading to tarnished homes and schools. bad girls were felt to result from failed parents and leaders, as one participant said, they say her parents are bad, not teaching her the right thing. teachers and religious leaders are also not doing their part. that’s why she is giving birth at the wrong age. also, she’s a bad girl (15-year-old high school student in accra). another 16-year-old high school student in accra stated, they see (an adolescent who engages in sex) as a bad child, a child who disrespect his/her parents and don’t listen to their advice. because almost all the people in the community advise their children not to get involved in such activity, but children who have bad peers just follow their friends and indulge themselves in such acts. so they see that as bad behavior. the bad girl image could extend to families and communities, leading to tarnished homes and schools. it also carried health (physical, mental) and social (e.g. disrupted education, employment, relationships, living situations) consequences, which were especially dire for those whose recourse was abortion which could bring a curse upon bad girls, leading to infertility and misfortune. an adolescent who becomes pregnant and has an abortion wouldn’t really get a proper marriage because when you are about to marry people talk and some men also try to investigate. so people will say this lady has had an abortion even if it’s once they will say thrice, and you will not be socially accepted in the community (16-year-old high school student in kumasi). however, in some instances described by participants, sex, childbearing or abortion was tolerated. community norms at times recognized that some young women face extreme circumstances in which sex may be permissible. some of the people see it to be normal (to have sex during adolescence) and others always look down upon them. in a situation where by they have sex to bring money home, in that house she will be hailed. [page 58] [qualitative research in medicine & healthcare 2018; 2:7062] article table 1. characteristics of the sample. (n=63) n % sociodemographics age in years 15 5 8% 16 10 16% 17 12 19% 18 6 10% 19 9 14% 20 5 8% 21 7 11% 22 4 6% 23 1 2% 24 3 5% highest level of education attained primary/none 7 11% middle/junior high school 21 33% secondary/high school 28 44% employment status employed 13 20% unemployed 22 35% student 28 44% marital status married 7 11% not married 51 81% preferred language english 30 48% twi 31 49% religious affiliation catholic 3 5% muslim 7 11% protestant 13 21% pentecostal/charismatics 34 54% other 4 7% recruitment site accra, ghana 31 49% senior high school 12 20% antenatal/postnatal clinic 12 20% family planning/adolescent clinic 7 9% kumasi, ghana 32 51% senior high school 16 26% antenatal/postnatal clinic 10 16% family planning/adolescent clinic 6 9% reproductive history number of prior pregnancies 0 28 44% 1 16 25% 2 12 19% 3 6 10% age at first pregnancy 15 1 2% 16 5 8% 17 5 8% 18 6 10% 19 1 2% 20 3 5% 21 4 6% n/a 28 44% number of live births 0 12 19% 1 17 27% 2 4 6% 3 1 2% n/a 28 44% results are presented as frequencies and proportions. numbers may not add to 100% due to 0-10% missing data across some indicators. no nco mm er cia l u se on ly others who do it maybe for pleasure hide it. so in the community it varies because those who do those things, some see them as important people and others also see them as bad people (16-year-old high school student in kumasi). also, for adolescents with limited upward mobility, pregnancy and motherhood could provide respect and admiration. for adolescents in school and considered on track, abortion was quietly understood to preserve education and employment goals, maintain srh secrets, and avoid long-term stigma. people will treat the person who is pregnant better than the one who had an abortion but after some time to come the news about the one who had abortion will die down and people will even forget about it and the person will begin to live that normal life again. but (not for) the person who had the child. since the child is there people will always remember that you had a child at a younger age (17-year-old high school student in accra). nonetheless, publicallyabortion was overwhelmingly unacceptable, even a double sin– that getting pregnant in the first place is a problem of its own. finally, participants commented on the evolution of norms and attitudes about srh over time in their communities and intergenerational differences in acceptability of adolescent pregnancy and childbearing. i think people don’t frown much because it’s like the order of the day. many young ones are getting pregnant every now and then, so is normal nowadays. yeah, (the stigma) has gone down because now teenagers get pregnant often so it’s normal with them (16-year-old high school student in kumasi). enacted stigma gossip, marginalization, discrimination, and mistreatment were forms of enacted stigma confronted by adolescents with srh experiences. fear of contagion – that srh taint could infect others who become spoiled too – was a major underlying source. if you are walking with your pregnant friend, best of the same feathers flock together. people will say you will be the next to get pregnant…no one will want to walk with her again (16-year-old student, kumasi). similarly, another 18-year-old high school student in accra participant said, (the community) sees (adolescents who become pregnant and have an abortion) as bad people because aborting a child is like killing a person. oh they don’t talk about them in a good manner and don’t treat them in a good way because they know they are spoilt. so they don’t allow their (own) children to get closer to them because they will spoil their children too. gossip, the most common form of enacted stigma, traveled quickly in communities, and while church members were a common source, peer gossip was often the most troubling. this was described by a 16-year-old student from kumasi, she is mocked if she is not married, especially a teenager. she will be shy to come out, staying indoors because (her peers) will gossip and look at her…insult and laugh at her. things will change because no one wants to walk with a bad girl. sexually active and pregnant adolescents were routinely rejected by loved ones, expelled from schools, homes, and churches, and subsequently suffered loneliness, sadness, and depression. verbal, psychological, and physical mistreatment, including being shouted and screamedat and even beaten, could be perpetrated by any member of adolescents’ social networks (though most often parents), and contributed to further public humiliation and disgrace. one participant commented on parents and teachers as perpetrators of enacted stigma. the mother will consider (the young women who becomes pregnant) but the dad, i don’t think so. sometimes she is likely be thrown out of the house and other family members might do same but it all depends on the relationship she has with them. when she is very close to them, like the aunties, they might welcome her [qualitative research in medicine & healthcare 2018; 2:7062] [page 59] article table 2. domains of stigma. stigma domain description example related to adolescent sexual and reproductive health 1. community norms others’ perspectives of the stigmatized attribute community norms about adolescents having sex or using modern contraception 2. enacted stigma social and interpersonal experiences related to having experiencing discrimination, marginalization, or violence the stigmatized attribute from family after having an abortion 3. internalized stigma one’s own perceptions of stigmatized attribute, feeling shamed or blamed for becoming pregnant as an based upon social values adolescent 4. non-disclosure worries, consequences, and actions related to disclosing adolescents’ fear of seeking family planning services because the stigmatized attribute providers and family will know about sexual activity 5. stigma resilience qualities or actions used to overcome /manage stigmatized personal strategies, support and resources used to cope with and management attribute; positive aspects of the stigmatized attribute early childbearing or prevent pregnancy no nco mm er cia l u se on ly but others will shun her. the (teachers) will sack her and be using her as an example to advise others, and she won’t be happy herself (16-year-old high school student in kumasi). another commented on the humiliation faced by religious leaders. church members treated me well but the pastor really laughed at me and even used me in his preaching, later asking me to stand in front of the whole congregation. i was shy when he called me forward (23-yearold fp clinic patient in kumasi with prior adolescent pregnancy experience). in some circumstances, enacted stigma experiences could differ according to pregnancy resolution. one participant commented on this regarding birth versus abortion. they rain insult on (adolescents who become pregnant), point fingers at them and people often do not welcome them when they get close to them. but they will treat the teenagers who give birth at a tender age better than the woman who had abortion because society frowns at women who do abortion (16-year-old high school student in kumasi). internalized stigma internalized stigma followed enacted stigma and resulted from negative community norms around adolescent srh. adolescent sexual activity and pregnancy brought feelings of disgrace, shame, embarrassment, and feelings about oneself as bad or spoiled. one participant described this. they will treat (young women who become sexually active and pregnant) in a bad manner…because you’ve brought disgrace to your family and to your teachers… because they have taught you or educated you on those things, so they weren’t expecting you to go into (sexual activity). so it’s a big disgrace to the teachers, and the family, and to the whole community (17-year -old nulliparous, unmarried high school student in accra). the collection of self-loathing feelings that accompanied sex, pregnancy, and abortion was consistently referred to as shy. shyness seemed to have a connotation extending beyond its western interpretation of bashful or timid. one 22-year-old, married, fp clinic patient in accra described the complexity, (my pregnancy) became a shame to me, but at a point i ignored it. i had already aborted one pregnancy. aborting a second is not good. when i gave birth fresh, i felt shy. in my community, girls of fifteen years give birth and are okay. i gave birth at nineteen, yet i say it is a shame. non-disclosure non-disclosure and secret-keeping were strategies used to avoid or reduce enacted and internalized stigma, at least temporarily. fear of reactions motivated decisions not to disclose sex or pregnancy and was in direct conflict with adolescents’ willingness to seek fp care. seclusion (often forced by family) kept pregnancies hidden from the community. in other cases, abortion kept both sex and pregnancy a secret. if she does the abortion, she will be going through pain but nobody knows. but if the young girl is pregnant and schooling, she cannot walk in town. people will gossip. she will hide, but when they see her, they will insult her (19-year-old student, accra). similarly, another young adult antenatal clinic patient in kumasi said, normally they do not second us in aborting pregnancy but mothers especially do not want to be disgraced, they tell their child to abort. society will not tell you to abort because they know biblically it’s not right to do abortion. stigma resilience and management resilience to stigma was seldom described by participants. various forms (emotional, financial, physical) and sources (family, partners, teachers) of social support helped women manage stigma, but mothers’ support was especially critical during pregnancy and childbearing. one participant described this. she gets support from her parents. they provide her with the things she needs and what the child will also need. the mother has to take an important role when the child has been born, teaching the girl how to breastfeed, bath the baby, and do certain things… support the child (15-year-old high school student in kumasi). stigma was reduced if the partner married the woman and provided for the child. however, adolescents without any one to care for her and her child are left wandering. one 17-year-old student in kumasi commented on community support when discussing her pregnant friend who was abused by her family. other people didn’t treat her badly. they received her because they felt the pain she was in…a young girl, pregnant, beaten, sleeping outside. they felt for her…tried to help her. some young women managed stigma through the hope that negative experiences associated with srh were temporary and would ultimately have little impact on her long-term life circumstances and goals. a pregnant adolescent antenatal clinic patient in kumasi described this. sometimes, i feel bad when i see a friend who’s schooling and i’m pregnant…locked. anyway, it’s not forever. i will come out soon. i will also go to school. education, employment, or relationships opportunities could be resumed, and reputations could be salvaged, through marrying the partner or successfully providing for the child, which as noted above could bring responsibility and respect. it was like, if i give birth, people will say, ‘why [page 60] [qualitative research in medicine & healthcare 2018; 2:7062] article no nco mm er cia l u se on ly didn’t you wait for the man to marry you before?’ ‘why didn’t you allow the man to come and meet your parents before walking with him.’ at times too, when you meet a man and he goes to perform the marital rites, his parents will say they want a grandchild but you might not be ready to have a child yet. but if you give birth before and you go and marry the man, it is good, because there are some women who after one or two years into marriage do not have any children. initially, when i was pregnant, i thought after giving birth the man will not do anything for me. but after giving birth, he did something for me (married me) (21-year-old married family planning clinic patient in accra with 2 prior pregnancies and one child). impact of stigma on family planning overall, participants described stigma experiences as adversely impacting adolescents’ access to and utilization of fp methods and services. contraception was rarely mentioned as a strategy to avoid pregnancy. rather, young women kept fp a secret, carrying the burdenalone, as one participant said, it’s my personal life…if i feel like going for family planning, it is my problem. unaccepting community norms around adolescent srh issues negatively impacted opportunities for adolescents’ reception of srh counseling, as one participant noted, if you advise (the young people about sex) they will insult you. if you talk about it, they will laugh at you and some may hiss at you. they will insult you because they don’t care. (21-year -old antenatal clinic patient in accra with 2 prior pregnancies). the act sex and disclosure of it, which was frowned upon, precluded use of contraceptive methods among sexually active adolescents, even when contraception was recognized as a potentially responsible thing to do as cited by a 17-year-old high school student in accra, well, the community would see it as good and at the same time bad (to use contraception). because on the safer side, she is trying to prevent the pregnancy, which she doesn’t want to give birth at a tender age. and it’s bad because it’s bad for me to go and have sex. reluctance to disclose srh issues, feelings of shyness, and fear of judgment and mistreatment from healthcare workers were explicitly noted as precluding srh service use. when asked about adolescents in need of fp care, a 17-year-old high school student from accra noted, nurses will send her away, say she is a bad girl, and insult pregnant teenagers. no, she can’t go get family planning. similarly, another 17-year-old high school student from accra said, no, teenagers don’t patronize health services because they feel shy and are not of age to give birth or get pregnant, so they will definitely feel shy to go. discrimination from healthcare workers, especially nurses, was commonly described. adolescents seeking services were told they are prostitutes, animal-like, and below the standard of normal people. one participant described this experience. i once escorted (my pregnant friend) to the hospital and it was like the (staff) including the nurses, everyone was like insulting her and even the doctors didn’t give her the best of treatment because she is young. so, she is reluctant to go to the hospital again (16-year-old high school student in kumasi. poor treatment was not always universal, though; sometimes persistent adolescents in need of care could find trustworthy, compassionate staff who would take them in. an unmarried 21-year-old from a kumasi antenatal clinic with three prior pregnancies said, i used to go to the hospital…one day, a nurse stared and said, ‘are you pregnant at this age? when we advise you, you don’t listen.’ the nurses would not take my card. i felt ashamed, vowing never to go there again. i went to (another hospital). the midwife welcomed me well. finally, stigma left adolescents without other trusted resources or safe spaces to turn for srh counseling, as one 17-year-old pregnant kumasi antenatal clinic patient said, my mother will say you are a bad, stubborn girl, insulting you for asking those questions. discussion stigma stories of these young women spanned different dimensions of srh and multiple stigma domains. terminology used was overwhelmingly negative, culminating with bad girl. this gendered norm was a salient underpinning of our interviews and was consistent with a gendered organization of life. expectations of marriage left young unmarried women alone to carry the burdens of unintended pregnancy risk, negotiating fp, obtaining healthcare, securing marriage, pregnancy decision-making, and early motherhood responsibilities. not dissimilar from hiv, infectious disease and mental illness stigma,20-30 adolescent srh stigma was grounded in deeprouted fears of contagion, of becoming spoiled and tainted too, which fueled social marginalization and discrimination. the lived experiences with internalized and enacted stigma described by these young women in the context of srh and their communities were results consistent with conceptualizations noted in the literature on hiv/aids and mental health stigma.20-30 other domains of stigma that emerged as specific codes and themes here formalize the roles of community norms and disclosure within stigma, features that have been described as contextual dimensions of stigma in the broader literature, though not as predominant domains.25 in the case of srh, these young women struggled to balance and weigh multiple stigma identities – most of which had similar features but some of which were unique – related to different srh experiences. some described [qualitative research in medicine & healthcare 2018; 2:7062] [page 61] article no nco mm er cia l u se on ly abortion stigma as compounding sex and pregnancy stigmas, while others described it as preventing childbearing stigma. regardless, the stigma process and its consequences (e.g. lost educational opportunities, violence, mental health symptoms) were similar for different srh experiences, not easy to bear, and further stigmatizing. while stigma resilience was seldom discussed, social support helped adolescents to manage stigma and survive early pregnancy and childbearing. related work specifically on adolescent pregnancy and discrimination supports these findings.11-13,18,34,35 our findings contribute to a richer understanding of stigma as a process and a fuller conceptualization of its various dimensions specifically related to adolescent srh and as it shapes young women’s fp outcomes. building upon theories accounting for enacted and internalized stigma, our new resulting working hypothesis and conceptual model (figure 1) depicts how community norms (determined by lay/professional attitudes, gender/cultural norms, religion) influence the extent to which young women experience enacted and internalized stigma. stigma may be facilitated by nondisclosure of srh and/or reduced by stigma resilience/management. this process impacts adolescents’ access to and use of fp methods and services, resulting in met or unmet need. the model accounts for the dynamic interplay between different, competing stigma domains, the balance between protective factors (e.g. family support) and risk factors (e.g. exposure to healthcare discrimination), and evolving social environments (e.g. changing gender norms or provider practices may reduce stigma, regardless of low social support). conclusions it is noteworthy that our findings and resulting conceptual model represent a fairly westernized notion of stigma and several of our investigative team leaders are u.s-based researchers and were intervening in a different cultural and social context in ghana. thus, there was a potential for threat of researchers voices to be present or focal in data interpretation, analysis and in presentation of results and our western perspective in designing and implementing this study could have biased the data collection and analysis processes. additionally, stigma is a construct which has been relatively understudied in subsaharan africa and other developing contexts, and health professionals and researchers may label complex sociocultural phenomena as stigma when stigma may not fully capture or accurately represent real people in real life situations. indeed, the lens through which we approached this research question and study design could have potentially shaped participants’ disclosure of their lived experiences within their communities related to srh norms, attitudes, and behaviors. as previously noted, however, we emphasize findings here which we felt represented stigma specifically, but our broader research efforts published elsewhere contextualize stigma in a much broader social environment and multi-level framework to understand the determinants of adolescent srh.33 nonetheless, it remains unclear whether these stigma findings fit perfectly in accord with complex community norms and rituals true to these ghanaian young women. several other potential limitations are noteworthy. first, participants in this study were not a representative sample of all young women in ghana or elsewhere and thus results are not generalizable to other countries and settings where srh stigma experiences may have been different. second, response and social desirability bias on part of participants may have also been a concern given our focus on sensitive issues, including sex and abortion. third, our use of incentives as compensation for our participants time could be viewed as coercing participation in this low-resource set[page 62] [qualitative research in medicine & healthcare 2018; 2:7062] article figure 1. adolescent sexual and reproductive health stigma and its impact on family planning need. no nco mm er cia l u se on ly ting, although our incentives were modest and recommended by our in-country team who is well versed with ethical research practices in this context. to address these potential biases, we rigorously trained and had regular debriefings with research assistants and study investigators on appropriate interview procedures, including ensuring comprehension and clarity of questions, establishing rapport, and probing for sensitive information.36 despite these limitations, the adolescent srh stigma model can guide future studies to quantify the impact of stigma on fp outcomes (the focus of our ongoing work), as well as inform multi-dimensional strategies to shift sociocultural paradigms of adolescent srh and address young women’s unmet fp needs. future research efforts and subsequent clinical practice, policy, and advocacy strategize can: i) evaluate stigma reduction/management interventions that address the multiple domains of stigma in healthcare and community-based settings; ii) provide and evaluate improved access to adolescent-friendly, patient-centered, holistic services and its impact on stigma and srh outcomes; iii) identify strategies to reduce systems-level barriers to contraceptive methods and srh counseling; iv) incorporate sociocultural context and stigma reduction/management content into universal, comprehensive sex education programs; v) implement messaging strategies at the social and cultural levels to promote societal openness and comfort regarding adolescents as sexual beings as a health promotive strategy.3,810,14,15 further research studies are needed to understand the impact of intersecting stigmas (e.g. of reproduction, mental health, poverty, minority, hiv), understudied stigmas (e.g. transactional sex), and stigma resilience on health outcomes.22 finally, health care professionals, researchers, and policy-makers must embrace a broader framework of sexual and reproductive health promotion in order to improve family planning outcomes and the overall health and wellbeing of young women in sub-saharan africa and beyond.8-10 references 1. singh s, sedgh g, hussain r. unintended pregnancy: worldwide levels, trends and outcomes. stud fam plann 2010;41:241-50. 2. tsui ao, mcdonald-mosley r, burke ae. family planning and the burden of unintended pregnancies. epidemiol rev 2010;32:152-74. 3. hindin mj, christiansen cs, ferguson bj. setting research priorities for adolescent sexual and reproductive health in low-and middle-income countries. bull who 2013;91:10-8. 4. machiyama k, cleland j. insights into unmet need in ghana. step up research report. london, uk: london school of hygiene & tropical medicine; 2013. 5. adanu r, seffah j, anarfi jk, et al. sexual and reproductive health in accra, ghana. ghana med j 2012;46:58-65. 6. asamoah bo, agardh a, ostergen p. inequality in fertility rate and modern contraceptive use among ghanaian women from 1988-2008: int j equity health 2013;12:1-12. 7. kelly dm. stigma stories: four discourses about teen mothers, welfare, and poverty. youth soc 1996;27:421-49. 8. fenton ka. time for change: rethinking and reframing sexual health in the united states. j sex med 2010;9:250-2. 9. sanfilippo js. teen pregnancy prevention: sexuality the magic bullets. j pediatr adolesc gynecol 2015;28:207-8. 10. satcher d, hook ew, coleman e. sexual health in america: improving patient care and public health. jama 2015;314: 765-6. 11. levandowski ba, kalilani-phiri l, kachale f, et al. investigating social consequences of unwanted pregnancy and unsafe abortion in malawi: the role of stigma. int j gynecol obstet 2012;118:167-71. 12. atuyambe l, mirembe f, johansson a, et al. experiences of pregnant adolescents-voices from wakiso district, uganda. afr health sci 2005;5:304-9. 13. wienmann cm, rickert vi, berenson ab, volk rj. are pregnant adolescents stigmatized by pregnancy? j adolesc health 2005;36:1-7. 14. glinski a, sexton m, petroni s. understanding the adolescent family planning evidence base. international center for research on women. available from: http://www.icrw.org/ publications/understanding-adolescent-family-planning-evidence-base-review-literature. accessed: august 2015. 15. langer a, meleis a, knaul fm, et al. women and health: the key for sustainable development. lancet 2015;386:1165-210. 16. hokororo a, kihunrwa af, kalluvya s, et al. barriers to access reproductive health care for pregnant adolescent girls: a qualitative study in tanzania. acta paediatr 2015;104: 1291-7. 17. lince-deroche n, hargey a, holt k, shochet t. accessing sexual and reproductive health information and services: a mixed methods study of young women’s needs and experiences in soweto, south africa. afr j reprod health 2015; 19:73-81. 18. hall ks, kusunoki y, gatny h, barber j. social discrimination, mental health, and risk of unintended pregnancy among young women. j adolesc health 2015;56:330-7. 19. thorburn s, bogart lm. african american women and family planning services: perceptions of discrimination. women health 2005;42:23-39. 20. goffman e. stigma: notes on the management of spoiled identity. new york, ny: prentice hall; 1963. 21. norris a, bessett d, steinberg jr, et al. abortion stigma: a reconceptualization of constituents, causes, and consequences. womens health issues 2011;21:549-54. 22. hatzenbuehler ml, phelan jc, link bg. stigma as fundamental cause of population health inequalities. am j pub health 2013;103:813-21. 23. link bg, yang lh, phelan jc, collins py. measuring mental illness stigma. schizophr bull 2004;30:511-41. 24. turan jm, hatcher ah, medema-winjnveen j, et al. the role of hiv-related stigma in utilization of skilled childbirth services in rural kenya: a prospective mixed-methods study. plos med 2012;9:1-12. 25. nyblade l, macquarrie k. can we measure hiv/aids stigma and discrimination? current knowledge about quantifying stigma in developing countries. washington, dc: icrw, usaid; 2006. 26. ginindza t. measuring aids stigmas in people living with hiv/aids: the internalized aids-related stigma scale. aids care 2009;21:87-93. [qualitative research in medicine & healthcare 2018; 2:7062] [page 63] article no nco mm er cia l u se on ly 27. garnets l, herek gm, levy b. violence and victimization of lesbians and gay men: mental health consequences. in: kimmel dc, garnets l, eds. psychological perspectives on lesbian, gay, and bisexual experiences. new york, ny: columbia university press; 2003. 28. van brakel wh. measuring health-related stigma: a literature review. psychol health med 2006;11:307-34. 29. kalichman sc, simbayi lc, cloete a, et al. internalized stigma of mental illness: psychometric properties of a new measure. psychiatr res 2003;121:31-49. 30. sartorius n. iatrogenic stigma of mental illness. bmj 2002; 324:1470-1. 31. cockrill k, upadhyay ud, turan j, foster dg. the stigma of having an abortion: development of a scale and characteristics of women experiencing abortion stigma. persp sex reprod health 2013;45:79-88. 32. shellenberg km, hessini l, levandowski ba. developing a scale to measure stigmatizing attitudes and beliefs about women who have abortions: results from ghana and zambia. stigma, research and action. women health 2014;54:599-616. 33. challa s, manu a, morhe e, et al. multiple levels of social influence on adolescent sexual and reproductive health in ghana. women health 2018;58:434-50. 34. rajapaksa-hewageegana n, salway sm, piercy h, samarage s. a quantitative exploration of the sociocultural context of teenage pregnancy in sri lanka. bmc preg childbirth 2014;14:394. 35. tanner ae, jelenewicz sm, ma a, et al. ambivalent messages: adolescents’ perspectives on pregnancy and childbirth. j adolesc health. 2013;53:105-11. 36. creswell jw. research design: qualitative, quantitative, and mixed methods approaches. 2nd ed. thousand oaks, ca: sage publications; 2003. 37. strauss a, corbin j. basics of qualitative research: grounded theory procedures and techniques. thousand oaks, ca: sage publications; 1990. [page 64] [qualitative research in medicine & healthcare 2018; 2:7062] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2019; 3:8921] [page v] i want to thank dr. wible for agreeing to act as guest editor of this issue. dr. pamela wible is a family physician born into a family of physicians who warned her not to pursue medicine. she soon discovered why to heal her patients she first had to heal her profession. fed up with assembly-line medicine, dr. wible held town hall meetings where she invited citizens to design their own ideal clinic. open since 2005, wible’s community clinic has inspired americans to create ideal clinics and hospitals nationwide. in between treating her own patients and helping doctors launch community clinics, dr. wible devotes herself to medical student and physician suicide prevention. she has investigated nearly 1300 doctor suicides and her extensive database and suicide registry reveals highest risk specialties and solutions. dr. wible runs a free doctor suicide hotline and has helped countless medical students and physicians heal from anxiety, depression, ptsd, and suicidal thoughts so they can enjoy practicing medicine again. dr. wible speaks widely on health care delivery and physician suicide prevention. she is the bestselling author of human rights violations in medicine: a-to-z action guide, physician suicide letters answered and pet goats & pap smears: 101 medical adventures to open your heart & mind. her blogs have been picked up by major media such as the washington post and time magazine. she has delivered two ted talks, an award-winning npr interview, and is a subject in the new documentary, do no harm: exposing the hippocratic hoax. an inspiring leader and educator of the next generation of physicians, dr. wible has been named one of the 2015 women leaders in medicine by the american medical student association and tedmed calls her the “physicians’ guardian angel”. her introduction to this issue follows. editor’s introduction to the guest editor pamela wible mariaelena bartesaghi department of communication, university of south florida, tampa, fl, usa correspondence: mariaelena bartesaghi, department of communication, university of south florida, cis 1040, 4202 e. fowler ave, tampa, 33620 fl, usa. tel.: +1.813.974.2145 fax: +1.813.974.6817. e-mail: mbartesaghi@usf.edu received for publication: 18 october 2019. accepted for publication: 8 november 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:v doi:10.4081/qrmh.2019.8921 qualitative research in medicine & healthcare 2019; volume 3:v no nco mm er cia l u se on ly layout 1 [page 6] [qualitative research in medicine & healthcare 2017; 1:6086] qualitative research in medicine & healthcare 2017; volume 1:6-13 there is a problem with the baby. these words, dreaded by every expectant parent, came spilling forth from the doctor’s mouth like a summons we could not escape. that was a defining moment, perhaps the defining moment that altered the course of our lives. it was not a summons to appear for a judgment, but a summons to live differently, to walk an unknown path. we immediately realized the many potential losses we faced in that different life, but we did not know and could not have known the depth of life, joy and goodness we would come to experience when we began walking that dark journey together. a clear line marks before and after this moment in my life. on one side is the life i had before march 12, 2002, a life represented by a studio portrait of my husband and me poised in perfect position, smiling directly into the camera lens. on the other side is the life i have now, a life represented by our favorite family photo in which my husband and i are engaged in a tickle fight with our three boys. everyone is laughing and no one is paying attention to the camera. around my house, we call the previous time, before will. and frankly, anything that happened before will is a blur. the cast of characters present in the dividing moment includes adam (my husband), a doctor, and me. to add another perspective to my account, i include adam’s voice. his rendition of the event adds color and depth where mine falls flat. he poetically depicts some of the events i remember as sterile and pragmatic. we investigate the parental experience of receiving a devastating diagnosis for our first child by bringing our private moment into the public eye.1 it is our hope that readers will, as frank says,2 think with our story by considering our cognitive and emotional responses of fear and faith as we move through and past the most traumatic day of our lives. additionally, our story adds to the growing yet still underrepresented patient and family accounts. through this account, we invite healthcare professionals into our home, thoughts, feelings and daily experiences to give a fuller view of what they experience with patients and families in the clinical setting. ellis and colleagues explain autoethnography as an approach to research and writing that seeks to describe and systematically analyze personal experience in order to understand cultural experience (273).3 using thick description, writers produce texts that are accessible and challenge the norms of scientific research by acknowledging the importance of the process of research as well as the product. autoethnography is concerned with both personal and social change and therefore seeks to be accessible to a wider and more diverse audience often disregarded by traditional research. narratives such as this one engage two authors’ experiences of an event. specifically, co-constructed narratives aim to show how people collaboratively cope with the ambiguities, uncertainties, and contradictions of being friends, family, and/or intimate partners (279).3 when two authors collaborate on autoethnography, the result is a social science research method that preserves the unique strengths of self-reflexivity associated with autobiography, the anvil: a crushing conversation lindy grief davidson, adam w. davidson university of south florida, tampa, florida, usa abstract in this collaboratively written piece, the authors narrate the most crushing day of their life. their reflections reveal their different yet resonating perceptions of finding out bad news about their first child during pregnancy. the authors seek to investigate the parental experience of receiving a devastating diagnosis for a child by placing two accounts of the same event side-by-side. while illness stories abound, they often represent only one viewpoint. the authors seek to provide a study of life in the midst of a crisis, which is rarely what it seems from the outside looking in. additionally, by using the accessible format of personal narrative, they provide a piece of research for a more diverse audience. correspondence: lindy grief davidson, university of south florida honors college, tampa, florida, usa e-mail: lindyd@mail.usf.edu key words: pregnancy; devastating diagnosis; illness; child. conflict of interest: the authors declare no potential conflict of interest. received for publication: 14 june 2016. revision received: 27 september 2016. accepted for publication: 28 september 2016. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright l. grief davidson and a.w. davidson, 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:6-13 doi:10.4081/qrmh.2017.6086 no nco mm er cia l u se on ly [qualitative research in medicine & healthcare 2017; 1:6086] [page 7] article cultural interpretation associated with ethnography, and multi-subjectivity associated with collaboration (17).4 using the ideas of autoethnography as modeled by scholars such as ellis and bochner and rennels and paxton,1,5 adam and i approach our story with the understanding that the event we describe played a major role in the construction of our marriage. facing the crisis of a child in peril forced us into making decisions about the ways in which we would relate to one another and to our child, fully aware that such a crisis can be devastating to a marriage. some readers will find similarities in their own experiences, but may not have been able to talk about them (84).6 as one story tends to evoke more stories,7 perhaps telling of our experience will inspire other couples to talk about their own experiences, feelings, fears and hopes because, while illness stories abound, they often represent only one viewpoint. finally, we hope to provide a study of life in the midst of a crisis, which is rarely what it seems from the outside looking in. specifically, we offer our story to show that parents face difficult decisions for their children from a position that may not be recognized by healthcare providers. a family’s story is greater than a medical diagnosis. this project began as an individual endeavor to tell my story about receiving bad news from a doctor. after a few drafts, i invited adam into the process and asked him to write his own version without seeing what i produced. after reading one another’s versions, we were amazed at how well they complemented one another. we focused on different moments within the event, so by placing them together, we created something beyond our independent tellings. although we consistently re-lived this story orally, we had never written it together. upon reading one another’s written accounts, we could see how the details of the story differed, and how we as characters differed in the tellings. reading my name as a supporting character in adam’s story allowed me to understand more about his unique perspective.8 yet the plot and one critical scene in particular were remarkably the same. i integrated most of adam’s writing into my original story. during the editing process, we discussed the paper and events described, our emotional responses, surprises at one another’s reactions, and new perspectives gained by years of hindsight. drafts were passed back and forth with me acting as principal editor. the process was time-consuming and emotional as i carefully interrogated my memory of and emotions about a life-changing moment. our storying of the event further solidified our emotional and spiritual bond rooted in christian faith, hope and love. we chronicle the events of the day our lives took an unforeseen turn and then reflect on how we made sense of that event.. adam’s: the memory of that day falls like shadow when the sun is still on the horizon and highlights the tops of the trees, leaving the ridges in full relief against the blue-black of the emerging night. most of what i can see in my mind’s eye is in the understory, obscured and darker than you expect with the leaves still bright above. i walk through the grey-ness, a little by feel and a little in conjecture. of that day, i remember most vividly my own looming worry and guilt. i tend to think the predictable worst of situations. in some ways, it is simply the result of being a planner as i work out details in my head to anticipate obstacles and strategize to avoid them. pregnancy, however, brought on more than the normal worries and fears. i also became obsessed with the question, what if my child is sick or dies? i could not shake the tendency to wonder whether we had won that lottery. i was already battling my thoughts as we pulled into the parking lot of the squatty cube-ish building in the middle of a much larger medical park. after a night of brooding and stewing on the ominous news about our child, that there appeared to be too much fluid in and around the kidneys, i couldn’t help but feel a twinge of guilt that i had somehow brought all of this on as a sick sort of self-fulfilling prophecy. had i worried my child into a tragic situation? i compounded the nagging anxiety with my frustration over feeling unwarranted guilt. it was a vicious cycle of bad thinking, worry compounded by guilt over being worried about a potential diagnosis and frustration with my guilt and worry. my thoughts were out of control. on a sunny march day, adam and i pull up to a medical office building downtown. karen says she saw the same doctor, and he told karen one of her baby’s kidneys looked a little small, but they would just watch it. she says she’s not really worried. adam interrupts my chatter to bring me back to the task at hand, what floor is it? the nurse said 240, so i guess the second floor. adam’s: it was a confined space full of impersonal, outdated reminders of where we were: a strange building, a stranger’s office, a specialty in medicine to which i had never given a single thought before that moment: perinatology. i wasn’t even sure how to spell this man’s name. an elevator ride to a long forgotten floor. a right turn down a narrow hallway and into a medical office-suite. a check-in desk on the right. we enter a door marked fetal diagnostic center and go through the usual doctor’s office routine of signing a clipboard and handing over forms of identification, insurance, and payment. we are directed to a seating area near the desk. no nco mm er cia l u se on ly [page 8] [qualitative research in medicine & healthcare 2017; 1:6086] article sitting on an upholstered chair, i take in my surroundings. the waiting area, with rose-colored walls trimmed by pristine white architectural columns is nice, too nice. a glass table occupies the middle of the floor, surrounded by couches and chairs like the ones found in an empty formal living room of a home that is otherwise bustling. for all the pretense of a living room, the pungent smell of institutional cleaner betrays the place as unmistakably medical. the worn, dirty, white binder atop a glass lamp table seems out of place in this sterile room, almost as out of place as i hope i am. without getting caught staring at her belly, i try to determine how pregnant the woman sitting across from me is. i wonder what is wrong with her as i try to dismiss what might be wrong with me. your fluid is a little low, said the nurse over the phone yesterday morning. i made you an appointment with a perinatologist at nine o’clock tomorrow morning. so here i sit with adam. we wait. adam’s: i have no memory of a waiting area or of waiting. of course, they knew we were coming, but in my memory we were not just a name on an appointment registry. we were already familiar to them, the path cleared and made ready. i was in a strange movie dream-sequence where the doorman invites the sleepwalker into the ballroom like he’s seen him a thousand times and yet, the walker has no prior memory of this place. we will get some video this time, i say to adam, faking confidence. my sweaty palms press against a blank vhs tape. he smiles, but i can tell he’s faking too. i plan to show the sonogram video to friends and family now, and eventually, show it to the star of the show when our child is old enough to understand. four days ago, a stoic and silent sonographer denied me the opportunity to record my first look at my first baby. instead of a fun family video, i got an hour lying on a hard table, eventually crying because i needed to pee so badly. the sonographer made adam wait in the lobby, so i was left alone with her and the gloomy cloud she projected. dismissing my expectations for the sonogram, she made little effort to discern the baby’s gender. the whole event was supposed to be exciting and revelatory; instead it turned out to be disappointing. as a high school senior, i received the superlative most likely to succeed. i took this as a life-long personal challenge rather than an award. defeat, failure and disappointment threaten success, and i expect to have success, perhaps even to embody success. i’m not accustomed to disappointment. i look at the binder on the table. a picture album? maybe. survival stories probably. any move in the direction of the binder feels like submission. the binder is a door into a world i do not care to enter, a world of medical crises where people pull through and after grand ordeals and great pains write letters of gratitude to the doctor who aided their survival. i don’t like the idea of living survival. i want to pick out the crib, register for gifts, find out if it is a boy or girl and avoid any grand ordeals. the binder is a portal to medical crisis, and i am determined it will not suck me into its vortex. lindy!!! my name bounces off the high-end tile floor, and adam and i dutifully rise to our feet and follow the nurse. she takes my blood pressure, asks me about cycle dates and escorts us to an exam room. the paper crinkles as i sit down on the large pink vinyl chair next to the sonogram machine. the sonographer introduces herself with a smile that communicates warmth and friendship, i’m valerie. adam’s: valerie was there. we saw her so many times over the next few months that i will never forget her face and smile, but that day, i was blind to those gifts. looking at her well-manicured fingernails and her make-up led me to assume she cared too much for her appearance. it was a surface evaluation that, as i reflect, only indicated my own shallow obsession with appearances. my flawed thinking encouraged me to dismiss her. nevertheless, her brightness and concern for me as a helpless spectator in the medical drama that followed taught me otherwise. valerie became my friend and companion over the next few months. she endured all the same sights and sighs with so much cheer and confidence. reassuring, checking, encouraging, translating doctor-speak, distracting (with small talk about our favorite restaurants), valerie occupied an essential part of our new world, not only for her technical skill as the doctor’s primary assistant, but also as a mentor in cheerful endurance. the sonographer of four days ago was stalin compared to valerie, who quickly obliges my request to record the sonogram on video. finally, something is going right! the doctor comes in and introduces himself as dr. al-masry, not o’malley, as i had written down with the appointment information. i envisioned someone irish with a playful brogue. dr. al-masry, we learn, is middle-eastern. his presence is larger than his stature, and his dark eyes and kind touch win my trust immediately. after we capture approximately ten seconds of sonogram video, dr. al-masry says, hmmm. i need to put in my own tape. while his tape is recording, he speaks calmly. we see the baby on the screen and smile at the discovery that our first child has his mother’s profile, complete with turnedup nose and deep-set eyes. the elation of the image, our baby’s image, our image, rises up to meet the anxiety that has already begun to inundate our souls. after several minutes of sonogram, complete with printed pictures, someone escorts adam and i to a small conference room filled with three chairs, a tv/vcr, and a box of tissues strategically placed in the center of the no nco mm er cia l u se on ly [qualitative research in medicine & healthcare 2017; 1:6086] [page 9] article round table. for a few minutes, adam and i sit alone in this room filled with dread and uncertainty. then, dr. almasry joins us. the air is thick with our silence. the binder from the waiting room has nothing on that menacing box of tissues. adam’s: at some point we are transported down the hall to the room with the round table, the box of tissues in the middle and the small tv/vcr combo on the filing cabinet. it was a horribly small space, confined and quiet – clearly an afterthought in the world of doctor’s office architecture and spatial planning. it was probably labeled office on the blue prints or maybe supply closet. that day, it was our black hole, where most of what we thought was our life, present and future, succumbed to the gravitational pull of our new medical crisis and disappeared in the darkness. dr. al-masry comes in, says a few words, plays the vhs tape of the sonogram, points out problems, and says more words. an anvil falls on our heads. the anvil comes down with the crushing news of a baby in peril, a baby who has suffered kidney damage, bladder damage and potentially fatal lung damage. in that moment, in that tiny conference room, i am crushed. while my baby’s life is not over, the life i thought i would have sits beneath a tenton anvil. that life is over. adam’s: it was difficult for me to wrap my mind around what was happening here. a barrage of new medical terms, uncertain diagnoses, and unknown consequences descended upon us, and we were completely unprepared, like soldiers sitting around the campfire making coffee, weapons leaned against a nearby log suddenly under attack by an unseen enemy. if we could have scattered we just might have. the loudest thing in my head was not the danger facing my child, who was still a bit theoretical at this point, barely beyond imagination in lindy’s little baby bump and the awkward and grainy sonogram images we had just seen. my mind was racing on thoughts of my own life slipping away; thoughts of a phd and recognition and accomplishment and stability and comfort and control, all spiraling into the dark like the sparks from that campfire now doused and strewn about in the melee. i was beginning to mourn the loss of my own life. certainly, my physical life was intact, but my personal vision for my future, the well-ordered steps in the line of ascent towards my dreams proved not merely poorly conceived, but totally wiped off the map. this news was stripping away part of my personal identity. although my dreams were speculative and illusory, at the time it felt as if part of me was dying. dr. al-masry explains that our baby is not peeing. his bladder is the same size as his head, his kidneys are most certainly damaged, and his lungs may not be developing. he says that we could terminate the pregnancy, do nothing and wait for the pregnancy to terminate itself, or we could try a procedure he has done on a few other patients with measured success. i begin to awaken from the daze the anvil has caused as he says procedure. my child is in danger and there’s something i can do about it. it’s serious. this won’t fix everything. some damage has already been done. i want you to go home and think about it. if you decide to do the amnio-infusion, come back this afternoon and we will give it a try. dr. al-masry is serious but compassionate. i can tell he doesn’t want to give us the impression that everything is going to be ok, but he also wants to help us if we want the kind of help he can offer. adam’s: lindy did most of the talking. in this moment, as best i could tell, we were in complete agreement: do what can be done to save our child. when dr. almasry laid out our options, i remember very well lindy’s confident question to his assertion that we get a second opinion: is any other doctor in this town going to tell us to do anything other than terminate? his answer, almost in resignation, was no. in his assessment, his pathway to treatment and potentially saving the life of our child was the exception and not the rule. that was good enough for us. there was a plain resolve in his response, and for that i am grateful. never again, not once, did i get a hint that he was not fully with us and for us. over the coming weeks, he worked intently, to the point that his hands cramped from the long, slow process of exerting pressure on a giant syringe attached to the smallest possible needle. what we endured, he endured. dr. al-masry confirmed his intention to proceed as soon as possible. we were to head home and return for a procedure later in the afternoon. i don’t remember leaving the room with the round table, much less the office, or the ride down the elevator. outside, it was one of those beautiful early spring florida days, sunny, a bit windy and bright. the car was warm. i remember nothing of the ride home. we go home and sit on the couch, listening to the clock tick away the seconds… minutes… hours. we try to pray, but words are difficult to form. our hearts are broken, so the praying is raw, spiritual groaning (romans 8:26). with my knees pulled to my chest, i call my friend karen who saw dr. al-masry for her pregnancy a few weeks ago. although we have seen the same specialist for high risk pregnancies, we determine that we sit at opposite ends of the risk spectrum. i wish i could join her at her end. no nco mm er cia l u se on ly [page 10] [qualitative research in medicine & healthcare 2017; 1:6086] article adam’s: when we got home, we called family and friends. i had developed into a young man who did his best not to cry. i did not care for this feature of my character; i admired expressiveness in men, but i had yet to learn to live in the tension of sometimes letting my emotions reign. i cannot remember whether i had shed many tears during the appointment, but when i called my father, my emotions let loose. i was barely able to articulate what we had learned and what we were facing. i have several vivid memories of my father in tears. his emotional moments sometimes give me permission to draw back the defenses around my heart and to let the tears fall. this time, when the pain of my present experience met the security of my father’s voice, i cried and cried. with tear-stained faces, we return to the downtown area, this time to the hospital. no one knows what to do with us at the hospital. on the fourth floor, they do the same thing every day. women come in, they go to triage, they have babies, and they go home. i don’t fit the script, so there is much confusion on the face of the woman at the desk. eventually, someone escorts me to a procedure room where i don a standard issue hospital gown, the first of hundreds i will wear over the course of the next seven months. dr. al-masry and valerie come into the room and i sit in a strange reclining chair, the likes of which i have only seen in ob/gyn. valerie finds the baby on the sonogram and dr. al-masry inserts a foot-long needle into my stomach and into the baby’s bladder to extract the fluid he is retaining. this is a version of an amniocentesis, but normally the needle would simply extract amniotic fluid from around the baby. in my case, that’s not possible because there is no amniotic fluid around the baby, it is all inside. after the baby’s bladder is decompressed and a sample is obtained, the difficult work begins. dr. al-masry has to find a pocket of fluid around the baby in order to infuse more fluid, but the baby appears to be vacuum-packed. after much searching on the sonogram, dr. al-masry and valerie find a pocket that is only 5 mm in size under the baby’s bottom. the needle is 3 mm. the amount of room for error is the same as the width of the wedding band i nervously twist around my finger. i feel discomfort with every movement of the needle, but i quickly learn to hide the pain because dr. al-masry is worried about me. he constantly reminds me he can stop at any time if it is too painful. i don’t care about the physical pain. i have already suffered a crushing blow today. that foot-long 3 mm needle will never compare to what the anvil delivered. after several tries, dr. al-masry gets his needle inside that tiny pocket. he begins to infuse fluid around the baby. as the warm saline rushes over the baby’s bottom, he begins to wiggle it back and forth. that’s when we get our first clear view. it’s a boy. we name him will. adam’s: with the success of the infusion and the little boy kicking on the monitor in his newfound freedom, i found myself floating in new and strangely calmer waters. the day had been a flood of perilous new possibilities for my life. but when will began to shimmy on that screen he became mine for the first time, and i laughed. a twinge of fatherly pride awakened. i was in no way ready to break out cigars, but i felt far less afraid of what we were facing. here was my son, lurking dangerously in harm’s way. but he was not alone. he had the resolve of his parents and the skill of a well-trained physician and his assistant to help. i had my marching orders. though i was in desperate need of sleep, i had a clearer vision of my role in the way ahead. a new story of my life began to take shape as i dressed myself that afternoon. time to put on your game face, i thought as i pulled the bill of my ball cap down even with my brow. had i known then what i know now, i wonder if i would have been more confident that my child would survive or more frightened of the days ahead when we would face waves of medical crises and surgeries. but knowing the future is impossible. i knew enough then. i knew that i decided to fight for will’s life. it was an option most women in such a position do not have. the intersection of personal resources, technological advancement, and a physician willing to think outside the box gave me the opportunity to make a choice offered only to the most fortunate in the world. later i would learn of the opposition, people who told me to consider my baby’s potential quality of life. these challenges didn’t cause me to regret my decision to act radically in an effort to save my baby, but they tempered my enthusiasm as i realized the crisp family photo i had envisioned was really a gray polaroid that would take years to develop. no one knows what the future holds, but most people think they have a pretty good idea. i had become one of the few who realize how uncertain the future can be. one day, my greatest concern for my baby was the quality of the crib. then next day i was concerned about the quality of his life. this unpredictable and shocking turn of events led me to understand that none of us knows where we are going. not only was my polaroid developing to reveal a family i hadn’t expected to see, but this image was also helping to frame my experience in new ways. when i encounter parents of newly diagnosed ill children, sometimes it’s like watching a replay of my life. after a diagnosis, parents can’t see things the same way anymore. various frames are tried: hope? despair? anger? selfblame? each shifting frame is a new look at past, present and future in an effort to explain, what is it that’s going on here? (8).9 everything looks different. the taken-forgranted joys of the past may never be reclaimed. the taken-for-granted unlimited potential for the future has been brought to the sobering reality of a ticking clock and no nco mm er cia l u se on ly [qualitative research in medicine & healthcare 2017; 1:6086] [page 11] article limits on everything. parenthood nightmares have become rational projections of the future. the hopes and dreams are what now seem irrational. parents do not know how to proceed. in the midst of grappling with the past and the future, there is the present reality, a daily walk down an unlit path with no map and no guide. this territory is new for us. the neat, sterile maps provided by the institutions of healthcare do not fit our experiences.10 frank explains, we find our way through illness by telling our stories.2 as adam and i share our story, we are co-mapping our journey. in order to find our way through illness, it is something we must do. that day in the waiting room, i resisted the survival stories in the binder. i believed a good life would be lost if i became a survival story. within the hour, though, i found myself in a small conference room searching for a way to the restitution narrative frank describes as a kind of illness story.2 i wanted to go back to an illness-free life. now, i do not see our story as one of survival or restitution. we have not merely escaped death, nor have we recovered the past. we have something new, perhaps in line with frank’s quest narrative, but simply put, ours is a story of life. before will, i had a strong sense that i was in control. smart, calculated, and untouched by tragedy, i was ready and confident to take on anyone or anything. after all, i was most likely to succeed. i studied theology for three years in seminary and believed god is omnipotent. but somewhere between my head and my heart, the information became confused, and i lived my life as though the power was mine to wield. blind to my own powerlessness, i skimmed the surface of life. with the news of my baby in peril, for the first time in my life, i had to walk by faith in the midst of grave uncertainty. i began to grope for practical applications for the theological ideas in my head. the god i had attempted to understand through knowledge became my only hope in the midst of a million questions i knew i could never answer. it was like learning to walk again. i had to go slowly, one step at a time, without getting too distracted by what was behind me or the obstacles ahead. fourteen years and two more sons later, i continue to move slowly. it is difficult and beneficial to my life. in order to take will anywhere, we must be prepared with a load of supplies. we carry medications, special food, a feeding pump, and a bottle of water and syringe for giving him fluid through his feeding tube. for a typical outing, will needs at least two backpacks plus a wheelchair. if we plan to be gone for more than a few hours, we have to make sure we have the means and a place to catheterize him. when traveling with a group, we simply cannot keep up. coming in last place grants me the opportunity to see things i used to miss along the way. mostly, i see people i never noticed before. i see the man who bags my groceries, gives me a hug and says, we’re friends, aren’t we? we’re friends! i see the neighbor who mumbles a response to my greeting as he shuffles to the convenience store every morning. i see will’s classmates as they greet him with enthusiasm when we pull up to school. i also see other families in the hospital; i see where they struggle. i see where maybe i can help. before i had will, i saw none of these people. due to our slow pace, i am not always quick to agree to family adventures, but recently, we decided to take all of our kids to legoland. having experienced other theme parks, i was concerned about taking will here. i worried because there is not a lot for him to do in a theme park. for the first several hours of the day, will showed little interest in the few rides we felt would accommodate him. he spent most of the time waiting on his younger brothers. after will and i emerged from a half-hour bathroom session in which i had catheterized him while at least a dozen people knocked on the family restroom door, my husband suggested we put will on something called the bouncing beetle. the bouncing beetle has a seat that goes up and down unpredictably. the other boys had enjoyed it while will and i were monopolizing the family restroom, and they agreed with daddy that will might really like it. might. as will, my youngest son and i strapped ourselves in, adam took our middle son to ride a roller coaster. i was outnumbered: two kids to one mom. i did not have an exit strategy, in case things went awry. while pointing to will, i told the attendant, he’s either going to love this or hate it. i have no idea which. so just be prepared for screaming. she looked at me nervously. when we were ready, she pushed the button. it started with a little yell. then there was a giggle. the giggle turned into a full-blown belly laugh. it was the kind so deep it’s contagious. and i caught it. everyone began laughing with will as we went up and down and down and up. in spite of the line of people waiting, the attendant told us to stay put and we bounced up and down on the ride three or four more times. will laughed hysterically each time. his laughing was only matched by my own delight that he was enjoying the ride. when adam and my other son came back from the roller coaster, we were still on the bouncing beetle. adam pulled out his phone and took a video of us bouncing and laughing. this was a moment worth capturing. even the attendant, who must have watched hundreds of other people bounce and squeal that day, was laughing with will. adam’s: we love our life today. it is far from the promise of doom and gloom that seemed so inevitable on that painful tuesday. our son and his care are complicated and at times extremely challenging. occasionally, someone invites me to wonder at what will would no nco mm er cia l u se on ly [page 12] [qualitative research in medicine & healthcare 2017; 1:6086] article have been like had he not been born early and with compromised kidneys. i find that exercise foreign and disconcerting. the child that i can imagine is nothing more than that: a vague thought in my obviously cloudy brain. i find no joy in that imagined person. i have no mysterious and absolute obligation to love, protect, train and provide for him. the son i have is the son that first appeared on that ultrasound monitor, shaped a little like barney, the goofy purple dinosaur. the son i have is the one with my hair and skin tone. the son i have is the son i love. that other child is not and could never be will, and to wish for will to be someone or something other than what he is would mean to not delight in the one who sits smiling wryly in front of me. i have yet to meet the person who knows will and does not agree with me. it was naïve to believe that the life i thought i wanted was better than the life i had been given. but how in the world was i to know that then? as i write these words a few days before easter sunday, i think about my job as the worship director in a church. i am responsible for planning and preparing our services from the first welcome to the final benediction. resurrection sunday proclaims a profound mystery, lost to most of us who are so ingrained in only what we can touch and taste and smell. i am right there in the middle of the masses who would rather not think about death, let alone face the impending death of my child. i get paid to offer the story that claims victory over the tragedy of death. but really, my experience also teaches me that resurrection is very real. even the seed must die so that the tree can grow (john 12:24). the message of my faith is what i want not just in my soul and spirit but also in my fingertips and toes, permeating my every thought and reaction to every unexpected tragedy and delight. i have lost count of the number of times i’ve prayed that will would learn to walk. somewhere in the middle of those prayers, i realized that i, like will, need to learn to stand, bear the weight of my body and take a step. i do not want to float above my circumstances, unscathed and not acknowledging the real hurt and confusion. the resurrection implies that death is real. i hope to be more fully committed to a life of love, joy and hope, even in the face of death and pain, for myself and for those who walk with me in the shadow of big trees, in the cool of the evening as the sun sets and the sky grows dark. a few days after we met dr. al-masry, we stopped at a park to eat lunch in the warm florida spring air. dr. almasry was keeping a close eye on me, with frequent procedures that would eventually become a seven-week hospitalization. the hazy future of our lives and the life of our child hung like a filter between us and the beautifully clear day. we sat at a picnic table in the park to eat our lunch and attempt a moment of levity. ironically it was the nearby playground, a place designed for carefree fun that pulled me deeper into the haze of uncertainty. adam and i exchanged hesitant words about the future of our child, wondering if he would ever play on a playground. we shared an unspoken understanding that if the image of healthy children at play was startling and unsettling, we might never see the world the same way again. we were correct, but what we didn’t know was that the new eyes with which we would see the world would not only cause us to grieve more deeply, but also allow us to laugh more heartily, take time to appreciate small successes, and experience the world in a completely new way. our family photo would not be a still shot of posed and practiced smiles facing the camera, but rather an action shot of a family of five, mouths agape in laughter, looking at one another. in our experience of crisis, adam and i chose to grieve together, pray together, work together and trust one another. this helped to build our relationship into something more resilient than it had previously been. this co-constructed project has also strengthened our relationship, reminding us of our perseverance during the darkest days of our lives. additionally, the project helps us to continue to discover new depths and insights into one another. since will came into our lives, we’ve never regained a clear vision of the future. our youngest son recently asked me, do you think will will ever get married? as our other boys become aware of the difference between will’s life and theirs, we work through the questions together. each question follows another. they string together into the unknown future awaiting us. how will we live? what will we be? i don’t know, precisely. but the lessons of the past fourteen years teach me that the best way to face that future is slowly, one step at a time and together. patients and families facing medical crises often ask for predictions of the future, and medical practitioners offer percentages of survival rates and success rates in an effort to address these questions. the concept of evidencebased medicine rests upon the knowledge of what treatments have worked in the past and are predicted to work in the future. however, when there is no evidence and no one can predict what will happen, it is easy to panic, avoid the situation or despair. adam and i share this story to encourage patients, families and practitioners alike. there is life in the not-knowing. we have never based our decisions for will solely on medical evidence, and often there has been little medical evidence to guide us. our own understandings, faith, and the guidance of patient and wise medical practitioners help us walk this mysterious journey that is much more than a medical drama; it is our life. references 1. ellis c, bochner a. telling and performing personal stories: the constraints of choice in abortion. in: ellis c, flaherty mg, eds. investigating subjectivity: research on lived experience. newbury park, ca: sage publications; 1992. pp 79-101. no nco mm er cia l u se on ly [qualitative research in medicine & healthcare 2017; 1:6086] [page 13] article 2. frank a. the wounded storyteller: body, illness and ethics. university of chicago press; 2013. 3. ellis c, adams te, bochner ap. autoethnography: an overview. historical social research/historische sozialforschung 2011;36:273-90. 4. chang h, ngunjiri f, hernandez kac. collaborative autoethnography. berkeley ca: left coast press; 2012. 5. rennels tr, paxton ba. sudden death, sudden friend: exploring the role of friendship in continuing bonds with the deceased. depart crit qual res 2013;2:182-212. 6. ellis c. the ethnographic i: a methodological novel about autoethnography. walnut creek, ca: altamira press; 2004. 7. coles r. the call of stories: teaching and the moral imagination. boston: houghton mifflin harcourt; 1989. 8. parry a. a universe of stories. family process 1991;30:37-54. 9. goffman e. frame analysis: an essay on the organization of experience. boston: northeastern university press; 1974. 10. davidson lg. would you like a map? explorations in hospital cartography. depart crit qual res 2016;5:23-36. no nco mm er cia l u se on ly layout 1 introduction laila (study participant personal communication. all names were changed): if i’ve got high blood pressure or my foot hurts, i think of cancer. […] so it’s kind of…am i not very fit, or…i mean, the first thing you think of is that it’s the illness coming back, isn’t it? most people who have experienced cancer know that it is not a temporary disease. it can mark one’s life also after therapy in the form of a great variety of physical, mental and societal difficulties. bodily sensations may endure and influence the everyday activities of someone who has had cancer. they can suffer from cognitive limitations, sleep problems, fatigue, pain and physical limitations, which cannot easily be categorized as new symptoms, late effects or discomfort connected to other illnesses. the phase after cancer treatment is often marked by worries about indeterminate bodily sensations, which might be symptoms of possible relapse.1 our experience of bodily sensations cannot be merely explained physiologically, but should also be examined as culturally embedded, and mediated by social practices and symbolic systems of meaning.2anthropologists have developed analytical approaches to elaborate the cultural and social meanings of sensations. those mentioned below are just a selection of those who deal with the subject. for example, hinton, howes and kirmayer3,4 show how interpreters of sensations refer to specific sensation schemas (which vary from society to society), to ideas evoked by a sensation, mental imagery or/and memories, so to emotion and cognition based circumstances, when interpreting a sensation at a given moment. howes5 explores the relationship between sensory experience and cultural expression. he criticizes the exclusion of sensuality from intellectual inquiry and reclaims sensation as a fundamental domain of social theory. geurts6 shows how the five-sense model (taste, sight, touch, smell, hearing) is not generally applicable in all the significance of cultural norms and clinical logics for the perception of possible relapse in rural northern norway – sensing symptoms of cancer magdalena skowronski,1 mette bech risør,1 nina foss2 1department of community medicine, faculty of health sciences, uit the arctic university of norway; 2department of health and care sciences, faculty of health sciences, uit the arctic university of norway, tromsø, norway abstract little is known about the process from experiencing indeterminate bodily sensations to perceiving them as possible symptoms of cancer relapse. we explore how such processes are related to local values and to clinical practice in rural northern norway. one-year ethnographic fieldwork was conducted in a coastal village involving ten key participants residing in the village who had undergone cancer treatment from six months to five years earlier. the village has instability in primary health care staffing, which influences how and when indeterminate bodily sensations are presented to shifting gps. the participants feel that they have to present clear symptoms, so they hesitate to see the doctor for such bodily sensations. moreover, the personal evaluation of bodily sensations is embedded in local values in the village. core values are to contribute to the common good, not be a burden, be positive and avoid focusing on difficult things. participants’ inner dialogues with co-villagers and health personnel lead to not sharing concerns about bodily sensations, even though they might be symptoms of relapse. we suggest a rethinking and relocation of hay’s analysis of social legitimation in sense-tosymptom processes in order to grasp the experiences of cancer in rural northern norway. correspondence: magdalena skowronski, department of community medicine, faculty of health sciences, uit the arctic university of norway, forskningsparken, sykehusveien 23, 9019 tromsø, norway. tel.: +47.48340823. e-mail: msk046@uit.no key words: relapse, sense-to-symptom, northern norway, primary health care, local values, rural health care. contributions: ms: acquisition of data. all three authors: conception, design, analysis and interpretation of data; revising it critically for important intellectual content; critical revision; final approval of the version to be published. conflict of interest: the authors declare no potential conflict of interest. funding: the project was funded by the research council of norway. received for publication: 3 october 2017. revision received: 30 october 2017. accepted for publication: 2 november 2017. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright m. skowronski et al., 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:138-146 doi:10.4081/qrmh.2017.7116 [page 138] [qualitative research in medicine & healthcare 2017; 1:7116] qualitative research in medicine & healthcare 2017; volume 1:138-146 no n c om me rci al us e o nly cultural contexts but rather how it is socially produced. hay7 develops a sense-to-symptom model, where she draws on fieldwork from lombok, indonesia. she states that [p]erceptional and interpretive decisions regarding what sensations need to be attended to as potential symptoms may be the result of personal awareness of cultural ideas about vulnerability, sensation duration, and interference with activities.7 hay argues that research has not explored enough how people come to recognize a sensation as a symptom, and thereby become patients in the health care system. since then, further research has been done to understand social processes of how bodily sensations are turned into symptoms, which has resulted in a better understanding of illness.8-10 hay’s perspective has been used to understand how u.s. veterans came to conceptualize their post-trauma suffering as post-traumatic stress disorder,11 or in analyses of pre-cancer processes.12,13 brandner et al.14 used hay’s analytical suggestions to understand the social contexts of ovarian cancer patients’ pre-diagnostic illness experiences and healthcare seeking. these authors show how the interpretation of bodily sensations as symptoms related to a possible cancer diagnosis is embedded within a social and cultural context. there is, however, a lack of research on how people who live in the aftermath of cancer treatment turn bodily sensations into symptoms. analysis of how cultural and social norms shape the experience and understanding of bodily sensations during a phase after cancer treatment are scarce.15,16andersen, et al. 2010) in norway, between one-third and one-half of the population will be diagnosed with cancer at some point. onefifth eventually die from it.17 cancer survival rates are increasing in most cancer diagnoses in norway and other european countries.18 this means that the number of people who live in the aftermath of cancer treatment is increasing, and many live with uncertainty and continue to worry about possible relapse.19,20 many find that they are seen by others as cured, instead of being identified as people who are gradually transitioning from treatment to survivorship.21 this unclear status makes them face other challenges than those of acute cancer patients or other illness groups, particularly in terms of processes of bodily sensations turning into possible symptoms of the cancer coming back. the aim of this paper is to explore the sense-to-symptom processes among people who have undergone cancer treatment and are back to most aspects of their everyday life, residing in a rural, coastal village with fewer than 3000 inhabitants in finnmark, the northernmost county of norway (undisclosed due to anonymity). the analytic focus is on experiences with the primary health care system and on shared values in the village. we assess cameron hay’s (2008) definitions of sensation and symptom as the most applicable ones for this article: a sensation is embodied; it is felt experience. by contrast, a symptom is a constructed and socially informed cognitive interpretation that indexes but is not itself an embodied sensation.7 our argument is therefore inspired by hay’s (2008) work on understanding the social and cultural processes involved in how sensations become symptoms. materials and methods this analysis builds on the overall project sencancer sensing illness in everyday life: care-seeking and perception of symptoms among cancer survivors, at the university of tromsø, norway. to be able to explore former cancer patients’ sense-to-symptom processes, a qualitative research design was chosen, and the first author conducted one-year anthropological fieldwork in the north norwegian village. the village faces the open barents sea to the north, and in the other directions partly hilly surroundings. winters are dark, very windy (often 10-20 m/s or more) and snowy. the short summers are foggy and life in the village is partly regulated by the extreme differences between summer and winter. most people in the village work in the service industry, the secondary sector of the economy, or the local health and care services. even though the fishing industry has diminished over the years, it is still considered the main industry in the village.22 the village has a primary and secondary school to 10th grade. due to the isolated geographic location and the twohour flight to the nearest hospital with an oncology department, people who live with cancer face challenges. flights are often delayed or cancelled, which makes access to specialized health care unstable. the first author was part of the everyday life and relationships in the village for almost one year. four men and six women who lived in the aftermath of cancer illness and treatment were the core participants in the study. the local general practitioner and the cancer nurse recruited five participants, by asking a few of their patients or former patients, if they would like to meet the first author and take part in the study. the first author recruited three participants through acquaintances, and two through an advertisement in the local newspaper. those who agreed to take part, were asked to sign an information letter and a written consent. the participants’ bodily experience of cancer started either with a surprising diagnosis, or days, weeks or months of uncertainty about something unusual in their physiology. during fieldwork, they were all in processes of resuming most aspects of everyday life, while still experiencing insecurity and worries about possible relapse. nine had completed conventional cancer treatment. one participant still had cancer, which was kept at bay by three different radiotherapies at different points in time. the timespan since treatment among the nine who had completed varied between three months and 10 years at study start. the participants had different types of cancer, were [qualitative research in medicine & healthcare 2017; 1:7116] [page 139] article no n c om me rci al us e o nly between 41 and 82 years of age and had different career backgrounds. they had varying experiences related to the diagnosis and treatment, ranging from an uncomplicated operation four years ago to the experience of relapse and living with late effects of treatments. four participants were back to work, one had to reduce her workhours after treatment and five were retired (table 1). the fieldwork involved biographical interviews and monthly semi-structured interviews conducted with the participants.23 the biographical interviews focused on participants’ illness stories and took place early in the fieldwork. these formed a basis for the monthly semistructured interviews. the monthly interviews included questions about well-being, perceptions of bodily changes, bodily sensations, and symptoms. participants were also asked about who was involved in their decisions about seeking care, their encounters with the health system, their reasons for choosing a particular care service and how they evaluated the health care services. combining these methodologies allowed us to gain access to the participants’ lived experience of bodily sensations and emotions in the phase after cancer treatment. in february 2014, three days before the end of polar night, the first author started fieldwork in the village. she had already made a few advance contacts with staff of the health care centre in december 2013, so that some people expected her visit. everyone knew everyone and her transition from being new in the village to meeting many acquaintances while walking along the street went fast. while going for walks in the village, joining friends, meeting regularly at a local café, chatting with people, singing in the local choir, knitting in the knitting club, and playing in the orchestra, she met both the participants and other inhabitants in many settings both regularly and by chance. inhabitants expressed mixed feelings to the fieldworker about the lack of anonymity in the village. sometimes they experienced the close-knit society as comforting since it allowed people to care for each other, but sometimes it could be a strain that everyone is always updated about one’s life. as an example of an everyday social exchange, consider a daily 11 am coffee at the only local café in the village. the first author would sometimes join the participant ole, when he met with other male pensioners for this morning ritual. if any of the regulars in the group did not show up, questions would be raised about their absence, as part of exchange of news and opinions on a broad range of topics, including cancer and health, death and illness among the villagers. more personal sharing of one’s own illness or worries was, however, not really part of the coffee talk. the analysis of participants’ responses was guided by questions like: how does this lack of anonymity, and the experience that people talk and everybody knows about one’s health and illness, influence bodily sensations and the process from sense to symptom among people living in the aftermath of cancer treatment in the village? how do they communicate sensations which might be symptoms of the cancer coming back? what do they share with co-villagers? how do they turn bodily sensations into something that the general practitioner or specialist should look into? ethical considerations we refer to the committee on publication ethics international standards for authors24 and confirm that our manuscript meets the required publication ethics. participants provided informed consent and had the option to withdraw from the project at any point. they were assured that any information they provided would be treated with confidentiality and de-identified. thus, all participant names have been changed. the community where the study was conducted was small, and descriptions which would reveal the identity of the informants were left out. this project addresses the sensual, emotional and relational aspects of the patients’ illness experiences. this means that patients and their significant others were vul[page 140] [qualitative research in medicine & healthcare 2017; 1:7116] article table 1. overview informants-status 2014. name/sex age recruited through occupation diagnosis-year civil situation/housing situation/children jan/male 62 local health centre retired lung-2011 couple/lives most of the year by himself/2 siri/female 42 local health centre works fulltime ovarian-2010 couple/lives together with partner/0 kari/female 50 local health centre works fulltime breast-2010 couple/lives together with youngest son/3 ole/male 77 local health centre retired prostate-2009 single/lives by himself/2 synnøve/female 57 local health centre works 50% part-time colon-2002 | lymph-2003 couple/lives together with husband/2 ines/female 57 acquaintance works fulltime breast-2013 single/lives by herself/0 bjørg/female 41 local health centre works fulltime ovarian-2013 couple/lives together with children and partner/2 terje/male 82 local health centre retired colorectal -2014 single/lives by himself/1 gro/female 69 local newspaper retired ovarian-2011 single/lives by herself/0 torleif/male 64 local newspaper retired (still not cured but kept at bay) couple/lives together with partner/2 no n c om me rci al us e o nly nerable both during fieldwork and by being included in the analysis. we believe special care and sensitivity was needed to protect and respect the patients’ integrity throughout the study. the research group worked specifically on these issues during the study. before we started the project, it has been presented to the regional committees for medical and health research ethics (rek) and found not bound to be assessed as health scientific project. it has also been reported to the norwegian data protection authority. manoeuvring of sense-to-symptom processes contributions to the common good (not wanting to be a burden to the healthcare system or others) bjørg: do you go to the doctor if you have a bit of a pain in your stomach for a couple of days? and then it goes away. and the same with ovarian cancer: it comes and goes […] i don’t go to the doctor because i’ve just felt it for two days. then it turns out, after all, that i should have gone several years ago when i felt those symptoms coming and going. so it’s hard to work out when you should go to the doctor, especially for me working in health care, i don’t want to look like a hypochondriac. after all, it’s my colleagues i’m going to. so to go there and say, “well, now it’s been like this and like that” one month before my check-up down in tromsø – that’s hard. so it’s like i maybe should have gone, but i’ll wait till i get to tromsø because i don’t want people to think i’m a hypochondriac. in everyday talk, the term hypochondriac is used for persons who pretend to be sicker than they actually are. in societies in which the understanding of illness is partly guided by clinical concepts, such a person tends to be seen as a burden, since she or he is taking up the doctors’ time wastefully.25 bjørg’s statement shows her attempt to avoid being seen as a hypochondriac. she feels responsible for understanding her body, recognizing the reason for bodily sensations that appear and making responsible health choices. bjørg is concerned about finding the right moment when she actually needs help, as she does not want to make use of the health care system unnecessarily. based on fieldwork in a suburban middle-class neighbourhood in denmark, offersen et al.26 show how…a moral relation between the danish welfare state and the middle-class population is embodied in a responsibility for individual health. they show how participants attempt…to seek healthcare properly, i.e. by not burdening the system with trivial matters and at the same by reacting timely on symptoms and risks as a responsible person and good citizen. in the norwegian periphery, social difference is structured differently,27 than that described by offersen et al.,26 and social difference is not the focus of our study. however, the participants in the village express similar concerns about being irresponsible or exaggerating their symptoms and health, and they try to avoid being a burden to others and the health care system. being concerned about being a burden can be connected to not being able to live up to what is generally morally accepted in the village. people value co-villagers who care for the common good, participate in voluntary work, care for others, and have a positive attitude. being anxious, concerned or hypochondriac can be experienced as negations of these values and the participants tried to avoid being associated with those attributes. the values can be exemplified in the appreciation of participation in the many dugnads in the village; these are voluntary and collectively performed activities for the good of voluntary organizations or the village as a whole. the regular participation in the cleaning up of the rubbish on the coast line is considered as one of those important dugnad activities. dugnad has developed from the need to work together in groups to survive in traditional farming and fishing communities. nowadays people do not depend on dugnad to survive in the northern norwegian coastal villages. the modern dugnad blooms especially in rural norway, and is for instance arranged when buildings need to be repaired nobody is obliged to organize or participate in a dugnad, but there is an implicit norm to get involved in it.28,29 people who for some reason do not participate risk being seen as non-contributors to the common good.30 further, people who have a positive attitude, do not complain and do not give in to hardships are valued. one should not be on sick leave without good reason, and people find it demanding to be asked about work and sick leave by co-villagers – such a topic is to be avoided if possible.22 for many of the participants, the possible symptoms of the cancer coming back could mean a setback practically and morally in terms of being unable to work, or having to reduce one’s work and contribute less to other areas of life, like family and voluntary obligations. having to see a specialist, which involves both a plane journey and taking time off work, is experienced as a standard procedure but also complicated. positive attitude how participants feel seen by others synnøve: when you get one of those depressions, well, it’s not a depression…i’m not that kind of negative person. i have a positive outlook. synnøve, had cancer twice and experienced phases in life in which she thought she might die soon. she was still concerned about relapse and explained how walking on one particular path in the natural surroundings close to the village became one way for her to deal with emotional or psychological difficulties, not only related to cancer but also non-cancer related situations. although she struggled with those psychologically difficult periods, it was important for her not to be associated with depression. synnøve associates having a depression with having a negative attitude. she is sporty, slim and suntanned, partly resulting [qualitative research in medicine & healthcare 2017; 1:7116] [page 141] article no n c om me rci al us e o nly from all her outdoor activities. during the interviews she would enthusiastically tell about trips with her husband, how she taught herself to ski while being pulled by her sons’ dogs and how she and her husband tried to be outdoors as much as possible, especially when they were staying in their cabin, mostly at weekends. synnøve enjoyed being seen as tough and active. people in the village referred to synnøve as a positive person, who managed to survive cancer, even though she was weak from treatment and was wheelchair-bound for some weeks. not letting yourself get depressed and rather focusing on and talking about the positive things in life is appreciated by people, and the participants found it difficult to admit that they were not feeling well, either mentally or physically, or that they were worried. torstein: people won’t ask how you are, because then they might get a whole dissertation about how you’re getting on. people can’t cope with that. they’re maybe not interested in lots of details. people want to hear: “i’m fine”. even though torstein criticized people’s attitude of not being able to handle bad news, he also seemed to adjust to it. he avoided appearing ill in front of others and having to burden people with his worries: i don’t want to burden anyone with my complaints […] and i don’t want my grandchildren to think: “poor sick old grandad”. in line with torstein comments about being a burden, bjørg imagined how people might think she was mentally unstable, if she misinterpreted bodily sensations as symptoms of relapse: bjørg: what i’m really afraid of is appearing to be mentally unstable...you want to show people around you that...as long as you’re off the sick list and all that, society or people around you kind of demand that you don’t...there mustn’t be any more talk about it, you’ve got better and so on. [...] you ought to be happy, and such negative things shouldn’t be mentioned. that’s what society expects of you. when you’re off the sick list, then you’re well. later in the same interview, she explained that she often tried to avoid sharing newly appeared, indeterminate sensations with others. she would rather try to find information in books and on the internet, for instance. participants experienced this phase of uncertainty, recovery and possible illness within a context in which it was not easy to talk about new alarming bodily sensations. foss30 discusses the term å stå han av, which she translates as stand up in the storm (and has meanings like we’ll manage, we’ll get through or we’ll survive), based on her ethnography in a small coastal community of northern norway. the term was used in different contexts to illustrate the northern norwegians’ strength of character, and it describes people who do not give up, even when they experience overwhelming hardships. it is an old expression from earlier times of poverty and extreme weather, and is today a symbol of identifying with northern norway and its culture, which is associated with people’s strength, resilience and strong social cohesion, qualities which people are proud of.30 in this section we showed how a culture of trying not to be focused on difficult things in life and one’s own worries and negative thoughts was part of the participants going through a phase of uncertainty and increased alertness regarding their body and possible processes of bodily sensations turning into symptoms. not wanting to exaggerate, wanting to be seen as a contributor and the value of a positive attitude all played a significant part in how sensations were assessed by the participants. they tried to avoid involving others in their first experience of indeterminate bodily sensations, as it might be connected to being negative and hypochondriac. they felt uncomfortable when misinterpreting indeterminate sensations and had inner dialogues about other people’s possible reactions. the participants played down uncertainty and negative feelings and tried to manage to assess the sensations by themselves. clinical logics and the lack of gps in rural primary health care in this section, we illustrate how high turnover in local primary health care in the village is relevant to the participants’ sense-to-symptom processes connected to cancer. primary care is the participants’ key point of contact for referral to treatment and check-ups by specialists, and the implementation of clinical logics within health care institutions in general. torstein, reveals how he had lived with non-hodgkin’s lymphoma since 2003, which had so far been controlled with three different radiotherapies, in a conversation with the first author. he explains how, during a recent consultation with a temporary gp, he had to introduce himself from scratch, and state why he came to see him, even though he had met him for the first time a few weeks before. he found the gp to be overwhelmed by his sole responsibility for the village, which meant he would continually meet new patients, while at the same knowing that he would leave the village again in a few weeks, and thus would not engage with patients in the same way as a permanent gp would do. torstein: […] he was badly prepared. because i noticed a patient before me who went out. and then i was called in straight after that. i don’t think he read my record. well, i took things the way they were. i told him why i’d come […]. m: mhh. torstein: it was… m: oh i see, he wasn’t sure why you’d come that day? [page 142] [qualitative research in medicine & healthcare 2017; 1:7116] article no n c om me rci al us e o nly torstein: yes. he asked “so what’s the matter with you then?” […] but i explained it to him bit by bit...and then he understood. m: i see. i didn’t know…will he stay here long or what? torstein: no…i don’t know if he’s employed here, or…i didn’t ask that but he speaks swedish. he kind of had norwegian with a swedish accent. [...] but it’s really strange about these doctors. they’re hired by one of those firms, that hires them out. m: mhh. torstein: so you have to take what you get. it’s a problem in all rural areas to get hold of doctors. doctors want to be in big hospitals, they want to be teams and maybe not have the responsibility of “i’m here all by myself”. m: mhh. torstein: so…no, we have to live with it. those gps or primary doctors, as i call them. so if you have a problem then you should be quite focused on moving up in the system. don’t let some doctor decide on the outcome if you have a symptom that’s quite obvious. if you have something that’s quite diffuse, backache for example or...that it’s hard to define, well then it’s...then maybe it can stay with the gp for a bit, because he doesn’t know how to send you on. i mean, to give you priority in the system. m: so you mean you have to sort of…keep at it… torstein: yes! torstein’s experience is that his bodily sensations ought to be specific enough to be presented in a consultation. previous research shows how the presentation of indeterminate sensations can lead to not being referred to see a specialist, and hence in diagnosis delay.33 andersen and vedsted34 show how a culture of inappropriateness of presenting diffuse and indeterminate bodily sensations or worries during a consultation means that patients have to wait until the sensations become more clinically relevant. torstein’s reflections show how the temporary position of the local gp and his unfamiliarity with the patients intensifies the patients’ needs to be focused and clear in their communication of possible symptoms when seeing him. while the first author was staying in the remote village, the local council employed a general practitioner, who had already lived there for a couple of months and communicated his plans to stay for some length of time. some conversations with residents, study participants and a nurse from the local health centre revealed that this was an exception. the local health centre was marked by high turnover. in the five years from 2008 to 2012, 16 gps and four physiotherapists had started to work in the village and left again, interspersed with periods with no such services.22 patients found that they had to start consultations from scratch, and to repeat information about themselves over and over again.22 people in the village would try to take this situation in good humour, and often said: well, we wouldn’t call it fastlege. they hint at the ironic meaning of the word fastlege, which is the norwegian term for gp or one’s regular doctor, but could also mean permanent doctor. working in primary health care in a rural area is the least popular choice among health personnel, partly because gps often have the sole expertise and clinical responsibility for an entire local authority area.31 these are some of several factors why gp contracts are more than three times as long as in local authorities with over 50,000 inhabitants than in those with fewer than 2000.31 understandably, small communities are more vulnerable to the lack of a gp than larger ones.32 in addition to the challenge of short employment periods of the local gps, the local health centre is embedded in a health care system based on clinical logics, with requirements of effectiveness and a biomedical understanding of the human body, which also affects participants’ sense-to-symptom processes. participants have certain understandings of what could be presented in a consultation and what is appropriate to ask for from previous experiences with the health care system. conversations with participants like laila show how this affected her experience and handling of bodily sensations. she was in her 50s and was diagnosed with breast cancer four years ago. during the fieldwork period, she felt generally well, but was noticing high blood pressure from time to time. whenever she perceived this or did not feel well, she immediately thought cancer might be on its way back. in the following interview section, she expressed a wish to get a sort of comprehensive overall medical examination to be able to understand why particular sensations appear. but she explained how such an examination is usually not part of her routine checks, and she made use of a kind of rational reasoning to justify in the interview that her wish was out of the ordinary. laila: is there any metastasis? have i got cancer anywhere else? [...] you just have to...you’ve got to believe you’re ok. as long as nothing else has been found. so well, but what i’d really like, i’d like it if you had a, like, a proper examination of not just the breasts but the rest of the body too, in terms of cancer. […] afterwards. and going round wondering and thinking about it: “could it be something?” [...] because it’s obvious, when you have breast cancer, it’s only your breasts they examine, nothing else. it would have reassured laila if she could have had a full body examination, hence she was dissatisfied with the gps’ usual choice of examining only her breasts. she pointed out the possible consequences of this decision, for instance that a relapse might remain undetected. the participants experienced concerns or indeterminate sensations, such as worrying when feeling in bad shape, but [qualitative research in medicine & healthcare 2017; 1:7116] [page 143] article no n c om me rci al us e o nly found it difficult to present this to the gp. laila related to the physician’s possible assessment when experiencing bodily sensations, and the gp’s imagined reaction was part of her evaluation of whether a sensation might be a symptom or not. this shows how clinical logics in the health care system play a part in how participants understand illness, their physical body and cancer, and how they experience cognitive limitations, sleep problems, fatigue, pain, physical limitations or a general sense of feeling unwell, signs which could be understood as concrete symptoms of relapse. the participants in this study would often use clinical terms in their everyday language, such as relapse, diagnosis or metastasis, which symbolizes how illness and body were experienced in terms of a biomedical understanding. previous research points out how patients reconfigure their concerns to fit the local clinical setting,34 and it is therefore not surprising that laila tried to balance her worries connected to indeterminate bodily sensations against the possibility of the gp seeing her as hysterical. laila: so if i’ve got high blood pressure or my foot hurts, i think of cancer. so i thought, well ok, if he [the gp] is willing to send me for an x-ray, well, then i’d like that. yes. so he should do that. i said he could write in the referral letter that it was a case of a hysterical old woman. laila was in an ambivalent situation. she was afraid of not being referred to a specialist by her gp for an xray, but was also concerned about assessing her sensations wrongly and making unnecessary choices involving the use of her gp’s resources. she felt that her partly indeterminate sensations hardly fitted in to the clinical framework of the meeting with her doctor. in this situation, her worries became too uncomforting, which eventually made her see the gp, but triggered a feeling of exaggerating too much. bodily sensations are not always clear or connectable to a specific cause, but often rather diffuse and do not represent a clear sign of a particular diagnosis.34 moreover, sensations are individual and therefore the experience of discomfort or pain can mean different things to different individuals. synnøve, for example, had had two different types of cancer (colorectal and hodgkin’s lymphoma) at different points in her life and was now living with chronic, daily pain in her joints, especially her feet, which she usually assessed as late effects of chemotherapy. sometimes, however, she experienced moments of doubt. when synnøve tried to understand her pain, she was not always sure whether it might be a symptom of a new diagnosis, the result of an exhausting day at work or influenza coming on. she found this confusing, especially because medical specialists had previously explained to her that she had a high threshold of pain, which was one reason for being diagnosed with cancer when it had already reached an advanced stage. clinical practice and its foundation, a medically conventional approach to the body and illness, suggest patterns of how certain illnesses are experienced, what kind of sensations and pain are connected to them, how strong they usually are and where they are located.35,36 the health care personnel signalled to synnøve that she had sensed alarming symptoms as not strong and early enough, and that other patients would have come earlier with a suspicion of cancer. hence, she became conscious about her own sensibility to bodily changes and anxious as to whether she might overlook something.34 both laila and synnøve embody and include clinical routines in their perception and assessment of bodily sensations, and in questions like: what shall i do about them? embodying those routines is part of their experience of their body and worries as something atypical and it both questions and informs the justification of their senses. in this way, they will either backpedal from judging a sensation as a symptom and consulting the doctor, or experience it as an encouragement or confirmation to actually contact the doctor. in this section, we showed how participants assessed indeterminate bodily sensations in relation to previous experiences in consultations and clinical practice in health care settings. sensations should preferably be specific enough to be presented in a consultation and thus clinically relevant. the often temporary stay of the local gp and his or her unfamiliarity with the patients can intensify the requirement to patients to be focused and clear in their communication of possible symptoms during consultation. the consequences for participants’ sense-to-symptom processes were that they tended to wait until they consulted the doctor or tried to make sensations fit into the clinical setting and connect them to a definite sign of a specific diagnosis, which had the potential to result in a delay in diagnosis and treatment. while the participants referred to how they sometimes experienced their bodily sensations and worries as indeterminate, they conducted inner dialogues, not only as presented in the previous section with other villagers, friends and family, but also with health care personnel, including assumptions about how these might react to the presentation of the indeterminate sensations and how consultations might turn out. discussion the significance of social legitimation for symptoms we have shown how aspects of the challenging local health care situation, embedded in an institutionalized clinical system, together with the local shared values, were embodied by the participants, and played a role in their sense-to-symptom processes. they led to inner dialogues with potential others, concerns about overreacting to sensations, being a burden to others and being seen as [page 144] [qualitative research in medicine & healthcare 2017; 1:7116] article no n c om me rci al us e o nly hysterical by co-villagers and the gp. these are all normsetting factors suggesting certain frames of normality, in terms of how the participants are supposed to react to certain sensations and how to act in their roles as former patients, officially tumour-free and recovered from cancer. in her article, hay7 suggests a model illustrating how social and cultural processes are involved in how sensations become what are medically known as symptoms. even though hay bases her analysis and the model on specific empirical data from her fieldwork in lombok, indonesia, she suggests its application also in other groups under study, in order to explore sense-to-symptom processes from an anthropological perspective. in this concluding discussion, we consider it fruitful to compare it with hay’s work, since this provided inspiration for the analysis process of this paper. in line with our results, we conclude by contributing additional analytical aspects to her suggestions for the exploration of sense-to-symptom processes. her data suggest …that people seek care based on their judgments that a sensation exceeds acceptable temporal spans or disabilities, or that it fits within their expectations based on experiences of vulnerability (hay, 2008). she describes how individuals in her studied group of sasaks …would verbally mark their experience of vulnerability with the phrase “i am not brave enough” and how they read and reread sensations, interpreting them as symptoms when there is an emotional-cognitive awareness of vulnerability. she shows how the perception of time is a decisive frame for judging the significance of a sensation and that [i]f sensations are seriously disruptive, they tend to be rapidly reinterpreted as symptoms worthy of outside attention. in other words, she argues that these three crucial aspects (personal awareness of cultural ideas about i) vulnerability; ii) sensation duration; iii) interference with activities) can be useful in understanding patient sensations as cultural and social phenomena as well as physiological ones.7 hay’s aspect of vulnerability is crucial in considering the sense-to-symptom processes of our participants, and is more significant, it seems, than it is for hay’s participants and analysis, since the very experience of a lifethreatening illness like cancer makes people very aware of suffering possible relapse. our key participants were clearly vulnerable. however, in our analysis we were able to locate other aspects relevant to the sense-to-symptom processes of the participants of our study; these were aspects which hay does not mention in her analytical considerations. while hay points out the relevance of the above-mentioned aspects sensation duration and interference with activities, we see circumstances like the atmosphere in the village, with its specific moral values, and the nature of clinical routines, which are reinforced by the high turnover of gps in the village, as much more decisive for how and if a sensation was turned into a symptom by participants. another aspect of hay’s considerations is that [t]hose sensations that are interpreted as worrisome are then presented to others, seeking social legitimation. people talk with others – neighbors, friends, acquaintances – about their sensations, describing and sensationalizing them, testing the boundaries of whether they could be symptoms. hay sees the social interaction around the interpretation of the sensation as a symptom as a step that occurs after one has considered whether the specific sensation experience fits with vulnerabilities or exceeds the expected duration or tolerable disability. in our analysis, we are able to show how this is different for our participants: when they assessed the significance of a sensation, they were aware of the local healthcare situation and possible judgements by health care personnel. moreover, their perception of sensations was also strongly influenced by their sense of not wanting to focus on negative things or to be hypochondriac or exaggerate excessively, and they therefore conducted inner dialogues concerning the possible judgements of other villagers. that is why we see the processes of social legitimation as already being a significant part of the assessment of bodily sensations. this is a major difference from hay’s analysis in which she states that [o]nce a threshold of one of these frameworks is crossed, a person recognizes that “something is wrong here.” and at this point, it appears to be crucial that that subjective evaluation is legitimated in a social arena.7 even though our participants wait until they actually discuss and verbalize sensations, worries and speculations with others, the imagined potential others, who might have strong opinions, are already part of perceiving a sensation and not only of legitimating a symptom. we suggest that the social and cultural processes influence the sense-symptom process earlier than hay suggests in her analysis; social legitimation and acceptance are already part of the assessment of bodily sensations and of a process simultaneously informed by sociocultural and medical values. we have illuminated an important discussion connected to the life phase after cancer treatment. this article can be seen as a contribution to the anthropological discussion on senses in general, but especially to a better understanding of how social norms and local health care conditions influence sense-to-symptom processes of former cancer patients in rural northern norway. previous research has shown how primary health care is facing challenges in some rural areas of norway, and this article shows how this has significant consequences for people living in the aftermath of cancer treatment. medical examinations in primary health care are crucial for referral to a specialist, especially for patients with chronic diseases and those who have to be followed up. our data shows how this situation is challenged and further steps must be taken to ensure continuity in primary health care in rural areas of norway. we suggest that further research could clarify whether the population in such areas actually has to overcome a greater inhibition [qualitative research in medicine & healthcare 2017; 1:7116] [page 145] article no n c om me rci al us e o nly threshold before contacting their gp than people 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moral possibilities in everyday life between sensation, symptom and healthcare seeking. anthropol action 2017;24:6-12. 27. gullestad m. det norske sett med nye øyene. oslo: universitetsforlaget; 2002. 28. aarsæther n. håkon lorentzen og line dugstad: den norske dugnaden. historie, kultur og fellesskap. sosiologisk tidsskrift. 2012;20:98-101. 29. dahl kv. fikk regning da hun ikke møtte på dugnad. 23 april. 2015. available from: www.byavisa.no. 30. foss n. nerves in northern norway: the communication of emotions, illness experiences, and health-seeking behaviors. qual health res 2002;12:194-207. 31. sollien k. fastlegene flykter fra distriktene. 01 february 2016. dagens medisin. 32. abelsen b, gaski m, brandstorp h. fastlegeordningen i kommuner med under 20 000 innbyggere. tromsø: uit norges arktiske universitet nsdm; 2016. 33. evans j, ziebland s, mcpherson a. minimizing delays in ovarian cancer diagnosis: an expansion of andersen’s model of ‘total patient delay’. fam pract 2006;24:48-55. 34. andersen rs, vedsted p. juggling efficiency. an ethnographic study exploring healthcare seeking practices and institutional logics in danish primary care settings. soc sci med 2015;128:239-45. 35. good bj. medicine, rationality, and experience: an anthropological perspective. cambridge: cambridge university press; 1994. 36. mol a. the body multiple: ontology in medical practice. united states of america: duke university press; 2002. [page 146] [qualitative research in medicine & healthcare 2017; 1:7116] article no n c om me rci al us e o nly layout 1 amid tragedy, a doctor’s most heroic act may be to listen to be a sacred witness to the suffering of patients. yet where do heroic doctors go with their pain? who listens to the suffering of physicians? the guilt of not being able to do more for patients. the burden of delivering devastating news to families. the work-related anxiety and depression due to unrealistic expectations of perfectionism. few venues exist for medical students and physicians to share their uncensored lived experiences. welcome to a special issue of qualitative research in medicine and healthcare dedicated to physician mental health and the unexplored lives of our wounded healers. doctor suicide has been a well-hidden occupational hazard of the medical profession for more than a century. though students enter medicine with their mental health on par with or better than their peers, they are up to three times more likely to kill themselves according to the american medical student association. in some residency programs 75% of interns meet criteria for major depression. we know that suicide risk increases with untreated mental illness. physicians who die by suicide are less likely to be receiving mental health care compared with non-physician suicides. in fact, doctors are more likely to self-medicate for anxiety, depression, and suicidality with tragic outcomes. why? here physicians share their personal journeys with anxiety, depression, ptsd, and suicide amid life-anddeath decisions for patients and themselves. some doctors have prevailed. others have been injured by the very agencies claiming to support them. a few have lost careers due to seeking help for occupationally induced mental health wounds. so how do we harness health in a system that undermines the mental health of our healers? well meaning medical institutions offer physician wellness activities with ice cream, yoga, and chamomile tea, yet these programs have been less effective at addressing the vicarious trauma doctors sustain from helping victims of child abuse, domestic violence, and social injustice. to create a culture of wellness in medicine, simple foundational solutions are proposed and celebrated here such as the recent decision by the national board of medical examiners to change the united states medical licensing examination from a numeric grade to pass/fail and the federation of state medical board’s decision to remove questions from licensing applications that may violate the americans with disabilities act. eradicating mental health stigma from within medicine allows our healers to receive the non-punitive psychological support they require and as a result we all benefit. may you enjoy this unique opportunity to explore physician psychology. introduction to the special issue on physician mental health pamela wible family physician, founder ideal medical care, eugene, or, usa correspondence: pamela wible, p.o. box 5225, eugene, or 97405, usa. tel.: +1.541.345.2437. e-mail: roxywible@comcast.net received for publication: 29 october 2019. accepted for publication: 12 november 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:98 doi:10.4081/qrmh.2019.8922 [page 98] [qualitative research in medicine & healthcare 2019; 3:8922] qualitative research in medicine & healthcare 2019; volume 3:98 no nco mm er cia l u se on ly layout 1 introduction over the last 30 years, many studies have focused on how organizations respond to crisis. crises can occur at any time on a regular but unforeseen basis, and are characterized by high consequences and short decision times.1 stachowski and kaplan2 suggest that understanding how teams carry out tasks, shed routine interaction patterns and adapt to crisis situations across a variety of circumstances is an important area for study. in healthcare, multidisciplinary crisis management or rapid response teams (rrt) have become more common, allowing a cross-sectional focus on patients’ needs, thereby preventing death or significant harm to patients. various participants may differ on how they believe communication occurs and should occur between team members, how and when team training should occur, and how teams should work together to intervene and prevent adverse outcomes. the following study provides an analysis of an rrt to help further the understanding of the crucial team processes that may occur during crises in healthcare organizations. to understand rrts processes in labor and delivery centers, prior research on rrts is reviewed, and knotworking theory is explained and applied to a study of a labor and delivery center at a large teaching hospital. rapid response teams in all teams, communication is important to assure the team meets their goal(s). team processes such as the ability to work together and communicate effectively improve care and increase patients’ understanding of procedures and feelings of satisfaction. when patients are experiencing distress, rrts are called together as a team of diverse caregivers to prevent further deterioration and adverse outcomes3 by managing patients’ crises. rrts have been examined in medical situations such as emergency rooms,4 intensive care,5 and cardiac care units across multiple hospitals and locations.6 multiple studies have focused on how training impacts rrts. in their meta-analysis of rrts, chan and colleagues7 note a heterogeneity across reported outcomes. they suggest this knotworking in an emergency response team: understanding team communication and process janet w. colvin communication department, utah valley university, orem, ut, usa abstract over the last 30 years, many studies have focused on responses to crisis in organizations. crises can occur at any time of the day or night on a regular but unforeseen basis and are characterized by high consequences and short decision time. in healthcare, multidisciplinary crisis management or rapid response teams (rrt) have become more common. rrts allow for a cross-sectional focus on patients’ needs and, thereby, prevent avoidable deaths or significant harm. this study uses activity theory and knotworking theory to examine how communication, multiple roles and power structures are negotiated in rrt’s in a large intermountain teaching hospital. results from focus groups indicate a single-minded focus on training for system errors may miss important aspects. knotworking theory is promising because it helps providers move beyond an understanding of teamwork to an understanding of how objectives can be shared and merged. correspondence: janet w. colvin, communication department, utah valley university, 800 w. university parkway, orem, ut, usa. tel.: +1.801.863.7282 fax: +1.801.863.7287 e-mail: colvinja@uvu.edu key words: crisis, teams, knotworking, activity theory. contributions: the authors contributed equally. conflict of interest: the authors declare no potential conflict of interest. contributions: jwc is the sole author on this paper. james anderson, nancy tobler, janet fisher all contributed to the research project and indirectly to the paper. received for publication: 2 october 2017. revision received: 30 december 2127. accepted for publication: 12 january 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright j.w. colvin et al., 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:128-137 doi:10.4081/qrmh.2017.7115 [page 128] [qualitative research in medicine & healthcare 2017; 1:7115] qualitative research in medicine & healthcare 2017; volume 1:128-137 no nco mm er cia l u se on ly may be due to a lack of standardized terms and treatment protocols. in their study, leach and mayo3 note that most of the research on response teams has focused on tracking and reporting the hospital outcomes (p. 199) and much remains unknown about teams and their performance during crises because of the complexity involved. power imbalances between team members explains part of the complexity in rrts. team members have different levels of knowledge and expertise. they also have different levels of responsibility and power. power may not be equally distributed and is dynamic is rrts.8 for example, physicians may have formal power but nurses might have more experience especially at a teaching hospital. not only is healthcare complex, the complexity is compounded by a tradition of professional fragmentation, of individualism, of a well-entrenched hierarchical authority structure, and of diffuse accountability9 (p. 576). in a meta-analysis of collaboration research in healthcare, san martín-rodríguez and colleagues (2005) identified social structures as a key influence on team behavior. activity theory one of the main reasons why teamwork in rrts remains elusive may be that tying together seemingly separate threads of activity10 with different power dynamics, team members, roles, personnel rotations, and ways of communicating is a complex and ever changing process. engestrom says that any complex social encounter – like those involved in interprofessional teamwork and communication – should take into consideration entire activity systems where multiple roles, history, points of view, and interests all intersect.11 the concept of an activity system suggests that an activity is not a homogenous entity but rather disparate group of elements, voices and viewpoints. kuutti12 notes that the purpose of such an activity system has its origin in a need and is geared towards producing a specific outcome. in this case the activity is the coming together of an emergency team in order to save a patient’s life. elements that contribute to an activity have been put into an activity system.13 an activity system is composed of six elements: individuals, objectives, tools, communities, rules, and division of labor. these elements demonstrate how interconnected a person’s objective is to resources, social community, rules and structure, and division of labor. when different objectives become shared in a crisis situation, unless those objectives can be merged, deviations or contradictions may occur leading to breakdown in communication, errors, and even endangerment of the patient. engestrom14 suggests that the more clearly we understand the discourse and its relationship to local productive activity, the more we will understand what is actually happening is teamwork. knotworking while literature on interprofessional teamwork in health care abounds, little if any has examined the complicated activity and discourse that occurs as different stakeholders interact. interaction occurs as actors help determine the actions of others. actors in an rrt work together to enable patient care. as they interact, they use discourse which enables the activity to occur. discourse reflects the historically constituted social/collective action of meaning construction in a community15 and relates to how participants’ language serves to regulate interpersonal relations and in turn is produced through patterns of interpersonal relations. for example, in an rrt, a physician may use acronyms or specific medical terms which everyone understands. however, they may also issue abrupt commands to nurses and medical assistants which make them feel they are being talked down to or disrespected. in turn, feeling disrespected may create an atmosphere of distrust and toxicity as team members have to work together. activity theory supports the study of complex situations such as rrts. even more specific to health care is its subtheory of knotworking. engestrom, engestrom and vahaaho,16 study threads of activity in complex multi-professionals settings that are rapidly changing and improvised as co-configuration and collaborative performance take place. when these practices go beyond conventional teamwork or networking to incorporate loosely connected actors and their work systems engestrom et al., argue that such co-configuration moves to the practice of knotworking. knotworking occurs when no single actor has fixed responsibilities or control but rather, when expertise is distributed across rapidly changing work places. knotworking is characterized by a pulsating, distributed and partially improvised orchestration of collaborative performance between otherwise loosely connected actors and activity systems16 (p. 346). in knotworking, because the crisis changes from moment to moment and involves constantly changing combinations of individuals distributed over time and space, the knot or center cannot be reduced to a particular individual or organizational center. the consistency over time is the ongoing mix of interaction among contributors, discourses, tasks and tools. the following is a hypothetical example of an rrt center: ms. jones has been laboring for the past 12 hours. suddenly the baby’s heart rate drops to a dangerous level and is not coming back up despite interventions to help it improve. the labor & delivery nurse is alone in the room with the patient and her husband and she knows she needs help. she pushes the emergency call light and asks the unit secretary to initiate an ob rapid response initiating a series of procedures that have been developed over time to deal with emergency situations. the unit secretary sends out the page and members of the response team are alerted to proceed to the patient’s room to evaluate her and assist in this emergency. the obstetrician informs the patient that a cesarean section is indicated and the team is activated and quickly [qualitative research in medicine & healthcare 2017; 1:7115] [page 129] article no nco mm er cia l u se on ly moves the patient to the operating room and prepares to proceed with the surgery. the room is busy but all team members are very focused. the scene includes a nurse who is helping to move the patient to the or table and position her correctly another nurse is prepping the patient’s abdomen for surgery. the obstetricians are scrubbing their hands in preparation for the surgery. a scrub tech is setting up the instruments and is prepared to gown and glove the surgeons when they come in. the patient has a labor epidural and the anesthesiologist is checking her anesthesia level and giving more anesthetic for the cesarean. in addition to the ob team, a pediatric resuscitation team is readying their equipment to be prepared to assist the baby when born if needed. a knot could occur at any point of this activity. because of lack of experience, the labor and delivery nurse checking on the patient may not call an emergency soon enough, the cart with supplies may be missing certain instruments, the staff nurse and the obstetrician may not get along and because of their personal differences do not communicate as clearly as they might otherwise, the anesthesiologist may not have heard their page and the rest of the team had to wait until she could arrive. different interests, values, and practices brought by each member/role must be mediated in the knot. engestrom17 argues that such mediation, in order to be successful, requires development of procedures and analyses to enable engagement in the knots and more frequent (re)negotiation than occurs in other types of organizational systems. thus, procedures such as what constitutes an emergency, who performs which tasks, or what happens if someone on the team does not respond not only acknowledge that knots will occur but also what should happen to address those knots. each professional comes to the team from a unique activity system and contributes a unique role in providing patients’ care. each professional is dynamically changing and through a relatively short period of time, overlap of roles, without clear-cut boundaries, and distributed collaborative work process, create knots as they co-configure tasks and tools. over time, the roles may stay the same; however, different individuals enact those roles as shifts change and different collaborators enter or leave the care of a patient. engestrom18 maintains that when an organization is trying to implement change that a linear process does not work as it ignores agency and motivational dynamics. even as accounting for agency allows stakeholders to change and adapt, it also creates situations rife with the possibility of misunderstanding, uncertainty and resistance. engestrom suggests five steps to allow for participants’ agentic actions: i) resisting the interventionist or management. ii) explicating new possibilities or potential in the activity. iii) envisioning new patterns or models of the activity. iv) committing to concrete actions aimed at changing the activity and expressing this through commissive speech acts. v) taking consequential actions to change the activity. one way that agentic actions and motivational dynamics can be studied is through the examination of organizational learning and power in knots. power gets demonstrated in how particular discourses are used or not used; which language is used to represent and interpret events and experiences. blackler and mcdonald19 found that when people are working in interorganizational knots that they are no longer bounded by the knowledge, practices, and relationships that regulate their work, that they have to invent new practices and orderings of work and manage continually fluctuating power relations. new practices may include communicating more clearly about expectations and ways of doing things. in research on knots occurring in academic research teams, laitinen et al.,20 revealed that practices on storing, coding and describing data varied from researcher to researcher impacting the ability of the overall team to find solutions to data management problems. these researchers had to develop a code book particular to this research. eppich et al.,21 more specific to medical teams found that medical team members had to speak up and even assign critical language for calling a time out when they had patient safety concerns specific to their area of expertise because of misunderstandings between those team members. similarly, andreatta et al.22 found that often there were discrepancies between clinical practice and institutional policies in interdisciplinary medical team influencing how members saw and responded to emergencies. these discrepancies had to be recognized and resolved in order for team members to respond similarly and consistently. when the rrt comes together, knots are created to find solutions to specific problems and are improvised. as this occurs, boundary lines are crossed, multiple roles are negotiated all at once, and power structures are dealt with that are inherent in medical care. knot negotiations such as these can influence whether someone speaks up, criticizes other team members, or keeps silent. to better understand how rrts function and communicate and ultimately improve rrt effectiveness, the purpose of this study, using activity theory and knotworking as a framework, is to help explicate how professional members of an obstetrical rrt team assert agency in knots and manage power structures. rq1: what is the nature of knots that arise for rrt teams? rq2: how is the knot negotiated by multiple roles in an rrt? rq3: how is power demonstrated as people interpret and represent their roles in the knot? materials and methods organizational setting overview a research team, including myself, conducted this study with the labor and delivery unit of an urban teaching [page 130] [qualitative research in medicine & healthcare 2017; 1:7115] article no nco mm er cia l u se on ly university hospital in the western united states that serves childbearing women of diverse medical and social needs. maternity care is hospital service-based and also includes private practice and midwifery. the hospital has 476 inpatient beds and 52 newborn intensive care unit beds. labor and delivery has 14 inpatient beds and three operating rooms. obstetrical emergency services has nine beds. in 2013 the hospital had 3,859 deliveries. an ob rapid response team (obrr) process was implemented in 2008. a number of people across the roles of the obrr (chief ob resident, jr. ob resident, ob attending, ob anesthesiologist, l&d charge nurse, 1st responder (rn), 2nd responder (rn), backup (rn) and scrub (ma)) complained about the chaos that was involved any time the obrr occurred. complaints included who should make the call, what roles should be performed, and questions about who should be responsible for assigning roles. complicating matters is personnel turnover. while the stakeholder role remains consistent, the stakeholders themselves do not. the obrr is implemented when someone calls the hospital dispatcher who sends out a page to the team. when the call is made, the stakeholders all have specific tasks that vary with the specific emergency. the impetus of this study occurred when one of the nurses involved in quality improvement wanted advice on how to make the process sustainable. after obtaining institutional review board approval, a qualitative approach was used to highlight the voices and views of participants. qualitative research methods are suited for initial explorations of complex phenomena and are often employed as groundwork for theory formation or experimental work.22 in this study, rather than beginning with theoretically guided questions, qualitative analysis allowed for an examination of err’s from insiders’ perspectives allowing their descriptions and analyses of the context to emerge. rundell, devers, and sofaer suggest qualitative research is especially helpful in health care settings in bridging the gap between quantitative studies of managed care and media accounts because it helps explain what forms of managed care implemented in various ways might influence provider behavior under certain conditions or circumstances in ways that might improve or harm quality of care.23,24 nine focus groups occurred, held over a two-week period for each of the stakeholders involved in obrr teams. stakeholders included obstetrical residents (ob res), obstetrical attending (ob att), obstetrical anesthesiologists (ob anes), other attending physicians (att), advanced practice nurses (aprn), charge registered nurses (crn), staff nurses (srn), midwives, and medical assistant/health unit coordinators (ma/huc). though these groups are multidisciplinary, focus groups were held with individual stakeholder groups for two reasons: first to alleviate power issues such as the possibility of medical assistants being intimidated by physicians, secondly, to develop an understanding of how each stakeholder group viewed the rest of the team from their own perspective. the goal of the focus groups was to understand the perceived barriers involved in the obrr. each of the focus groups was approximately 60 minutes long and participants from each group/role were asked to voluntarily participate. researchers asked participants open-ended questions in order to help them describe their experiences and responses to working in an obrr team. responses were recorded by research assistants on large posterboards situated around the room. results from the focus groups demonstrate that knots occur, are negotiated, and that power struggles within the knot occur. these are described in the following section. coding in order to understand the process, activity theory and more specifically knotworking was used as a framework. though the focus of knotworking in the past has been primarily in educational settings, such examination of pressure and pulsations seems to help explain interconnections and subtleties of crisis teamwork in new ways. for this project, i used qualitative methods of analysis to answer the research questions. this methodological approach embraces a humanistic orientation to understanding and representing participants’ realities.25,26 focus group comments (n=709) were transcribed verbatim and then analyzed. to provide confidentiality, participants are identified only by role.27 in order to stay true to the raw materials, qualitative content analysis was used to code focus group comments.28 this methodology allows for attention to content or contextual meaning of the text.29 each comment was identified by role and assigned an attribute after asking what is happening here and what are the participants main concerns?30 attributes were such things as workflow, problem, success, transition. attributes were then examined for language which would identify specific agentic actions. finally, the assigned attributes and actions were discussed by all involved in the project to determine if they rang true, what they meant, and whether these could be applied consistently. agentic actions were used to guide the reporting and discussion of qualitative data in order to present the focus group findings. two hundred sixteen comments were not coded as they were listed in focus group notes as such things as ob team or sbar (an evaluation tool), but did not carry valence or clarifying information. of engestrom’s five agentic actions, steps four and five were not coded from focus groups because these comments were centered around things that had happened in the past. it was not until after the focus group results were compiled and shared with stakeholders that changes began to occur. steps four and five are more directed at future actions. these steps emerged through later discussion with the obrr team and were shared with the research team. [qualitative research in medicine & healthcare 2017; 1:7115] [page 131] article no nco mm er cia l u se on ly results research question one asked about the nature of knots. this question was answered by examining all comments for thematic content to determine what and where pulsations and negotiations (knots) occurred. results are presented using comments. however, though this is a qualitative study, numbers and percentages are also included to demonstrate how often comments were made and how big of a percentage they represent in comparison to other themes. four themes emerged from 485 overall comments: process (n=309, 63.71%), communication (n=75, 15.46%), role (n=73, 15.05%) and training (n=28, 5.77%) (figure 1). process had the highest number of comments. process comments referred to anything that had to do with the way the obrr functioned. in examining each stakeholder, process has the highest percentage of comments across all four themes except for midwives. comments included such things as the charge nurse stands in the corner…the doctor is not directing activity in the room (srn) and the senior anesthesia resident cannot put [the] patient to sleep without an ob atting in the room (ob res). all the stakeholders focused on process; however, 88% of all comments made by ob ress were process comments while only 44% of the midwives total comments were process related. comments about communication revolved around the way stakeholders transferred information before, during, and after the obrr was called. often stakeholders asked for clarification, translation, or discussed differences in articulation as varying stakeholders as well as individual personalities negotiated the obrr. one ma said: the ob provider should announce when it’s a shoulder dystocia so we can get call the ob rapid response and get the help we need quicker. midwives were concerned about communication as they negotiated the complexities of coming into onsite situations from the outside where ob ress and rns were already working with patients and power was not always transparent. one rn wondered how often do you communicate with new versus experienced nurses [about patient care]? midwives also felt they (the midwives) were much more conscientious about discussing patient treatment with the patient than other roles. communication issues focused on discursive differences between groups such as nurses and ma/hucs feeling like they could not call an obrr, and physicians feeling like these calls were not always clear because not all obrrs called were emergencies that needed their involvement. midwives were the most focused on communication with 44% of their comments relating to communication. at the opposite end, crn’s comments were least focused on communication – only 8.2% and most of these were more about how the process was being communicated than about how people were inter[page 132] [qualitative research in medicine & healthcare 2017; 1:7115] article figure 1. comments, by roles and themes no nco mm er cia l u se on ly acting: we need more clarity about who gets paged (crn). seventy-three comments centered on the role played in the obrr team. when examining the total number of role comments, the stakeholders with the highest percentage of role comments (23.88%) were crns. this relates to their role as the person who assigns various stakeholders to the team on each shift. one crn asked, who checks whether the cart is unlocked and stocked – the ma/huc? another said: when i was first on the team and was assigned to be the 2nd responder in an emergency cesarean section, i really didn’t know what i was supposed to do so i would just start to do the 1st responder role because i knew those tasks. an aprn suggested, [we need] clear expectations of everybody’s role. other role comments focused on how the obrr was working together: it’s not my patient but our patient (aprn) and explaining those interconnections to patients we need to educate on the hand-off and explain roles to patients (srn). crns and midwives did not make any comments about role. the fourth theme centered on issues about training. twelve percent of the midwife’s comments were about training: residents need training on working with midwives – get on agenda/need to change culture/shift attitudes (midwife). eight percent of crns comments were about training. these were mainly about the need for training and education [we need] to improve training and have better education, better orientation, and review roles (crn). one rn described the following: when the emergency light goes off and lots of people run into the room there can be a lot of noise and commotion. sometimes this seems to make the situation worse because staff are unsure of what role they are in and what they should be doing in that role or staff who are not part of the team run in to try to help and then there are too many people in the room. another rn noted: i had a shoulder dystocia and pushed the emergency light. some newer staff nurses came running into help. the charge nurse was in a different delivery and didn’t hear the page. the baby was born floppy with minimal respiratory effort. because these newer nurses didn’t have much experience with resuscitating babies, i needed to do this until the pediatric team arrived. eight percent of ma/hucs comments were about training as well but these were mainly about the need for their own training. [we] need more training on obrr (ma/huc). the only physician stakeholder group with any comment about training was the ob attending physicians who are in charge of training interns and residents. ma/hucs made more comments about training (or need for training) than any other role. there were three roles who did not make any comments at all about training: ob res, att, and ob anes. knot negotiation the second research question asks how the knot is negotiated by multiple roles in an rrt. this question was answered by coding focus group comments for engestrom’s18 five participant agentic actions. these actions include: i) resisting the interventionist or management; ii) explicating new possibilities or potential in the activity; iii) envisioning new patterns or models of the activity; iv) committing to concrete actions aimed at changing the activity and expressing this through commissive speech acts; v) taking consequential actions to change the activity. actions one through three were examined through focus group comments. actions four and five will be discussed later in the paper. resistance resistance, or pushing back against the interventionist or management, took place as team members expressed unhappiness with the current status. discursive work was evident in comments that focused on resistance as evidenced by these comments: doctors [are] trying to dictate – telling the nurses not to follow protocol (srn) and in the cesarean sections, the charge nurse is not always active in response (srn). one crn said: i have been told by some of the doctors to not push the emergency light because they feel that they have all the staff they need in the room to handle the situation. at times i don’t think we need to call the ob rapid response because all team members are in the room. but sometimes this isn’t true and we end up having to wait for the ob attending or the anesthesia attending. sometimes there was resistance in assignments given. the charge nurses assign the roles at the beginning of the shift but sometimes there isn’t enough experienced staff and newer staff are assigned and that can be a problem if they have never been in that role before (srn). aprn’s asked the most questions, ob anes did not ask any. explicating explicating involves explaining and looking for potential in the activity. explicating comments focused on defining or explaining the obrr process. these included such things as: midwives typically talk through the process to avoid the rr button from being pushed during shoulder dystocias (midwife), and the clarity of communication depends on the team (who is on it at any given time) (crn). one srn even said, some of the ob providers should speak louder so that we can all hear the plan. crns had the highest percentage of comments that explicated something about the obrr process. at the same time, ob anes did not make any explicating comments. [qualitative research in medicine & healthcare 2017; 1:7115] [page 133] article no nco mm er cia l u se on ly envisioning envisioning involves looking for new patterns or models. comments in this category were about envisioning changes for the future or looking for solutions. one comment was a suggestion that it would be helpful if team members’ names from the incoming shift should be written next to the previous member’s names on the white board (ob res). another was that including pictures of team members on the white board would be helpful (ob att). srns and ob ress made few comments in this category. after focus group results were shared with the obrr stakeholders, steps four and five emerged. step four, committing to concrete actions aimed at changing the activity and expressing this through commissive speech acts, occurred in a number of ways. as focus group comments were shared, stakeholders started discussing the points they thought were most pertinent and valuable and where changes could be implemented. the changes were then taken back to the larger stakeholder groups and discussed. for example, the ob anes saw value in having a second responder dedicated to them, and recognized that many of the staff were unsure of how to perform the tasks expected of them, and that there was a need for increased and more specific training. step five, taking consequential actions to change the activity, occurred later as well. some of the specific changes include i) agreement by all stakeholders that anyone can push the come now button for obr; ii) assignment of team members prior to shift change; iii) safety briefing of team members; iv) creation and distribution of a document by midwives that describes the various stages of consultation/co-management/hand-off; v) change of the response call for postpartum haemorrhage to include stage 1 and stage 2; vi) creation of a concept called perfect practice which means a standardized protocol is followed. power research question three asked how power and power imbalance may influence the team process. power is inherent within a medical setting. physicians’ words and actions carry more weight than those of an intern or resident. often an intern or resident exhibits more power than a nurse, even those with many more years of experience. medical assistants typically have the least amount of power. these power imbalances were apparent in the obrr and the way discourse and negotiation occurred. one example of power imbalance was evident when nurses felt that interns, residents, and other physicians were chastising them. however, interns and residents said they never chastised: we don’t raise our voices or question them. we don’t know why the nurses say we do. power is even more evident when looking at types of comments by role. all roles made the most overall comments about process but those with power to change training had higher percentages of comments in this category: midwives (12%), crns (8.2%), and ob atts (6.89%). the person with the most ability to change roles within the obrr is the crn. one ma said: the rule is that staff should be here at least 6 months before they can be on the rr team but sometimes crn assign a newer ma to be the scrub and they are a little freaked out by that. power issues also arose when looking at agentic actions. those with less power spent more time questioning and explicating. of particular note was the repeated dissonance those in low power felt interacting with higherpowered/ranked individuals such as the obs. one term the low-power participants used repeatedly was unappreciated, indicating that for them, one of the major indicators of the success of the obrr was their contribution to making everything flow smoothly. those with more power focused on envisioning. in fact, ob anes only envisioned. alternatively, it may be that the ma/hucs and crns had the most concerns about roles because their specific role in the obrr team deals with the greatest number of individuals and processes in the knot. in other words, though this may be a power issue, it may be also because they observed and interacted with a larger proportion of the threads in the knot than the obs, thus commenting on those roles the most frequently. ultimately, process spans boundaries, communication, role, and training which all emerge more specifically with stakeholder role and power. research question one asked about the nature of the knots implicated in the obrr teams. this research identified four areas of pulsations or knots: process, communication, role, and training. research question two asked how the knot is negotiated by roles. all five of the agentic actions were demonstrated. however, the first three occurred during the focus groups – question, explicate, and envision. the three actions occurred and different roles were more dominant in different actions. the other two action steps (committing and taking action) occurred in real time as the team handled crises and worked through the questioning, explicating, and envisioning process. research question three asked how power is demonstrated as people interpret and represent their roles in the knot. results provide similar insight into the complicated process of power imbalance in medical situations. discussion as stakeholders develop procedures to negotiate the knots that occur when an obrr is called, each person performs within boundaries of roles and with their own agency and motivation for that performance. this fluid interactivity creates shifting discursive patterns and knots that could be mapped during focus groups with stakeholders. patterns emerged such as those lower in power focus[page 134] [qualitative research in medicine & healthcare 2017; 1:7115] article no nco mm er cia l u se on ly ing more on questioning and explicating and those with more power focusing on envisioning. this mapping shows how examining individuals, objectives and tools is not enough. community membership, labor division, and rules for interaction (engestrom, 2000) also must be included to understand how obrr teams work together. process comments illustrate the importance of analyzing patterns that emerge as people talk about the obrr process. process was by far the most important aspect of completing a successful obrr. analysis of patterns shows that the majority of the discourse and problems that occurred were about the process itself. mapping the comments shows ob ress having the most process comments with twice the number of comments as midwives. this could be because midwives are in and out of the hospital and not as involved in day-to-day procedures while ob ress are not only there but are required to report to their supervisors on activities. such mapping shows how fluid the process is and how the discursive work focuses on different aspects of the same task as they locate themselves and engage with others. examining process through the lens of knotworking helps to explain where complications might occur, how to anticipate issues that might arise, how actions are demonstrated and at which point. in this obrr, the discursive practices demonstrate how complex relationships and knots are in crisis teams – nurses were overruled by interns with less experience, doctors gave instructions but were perceived as yelling at nurses or ma/hucs insisted they needed more training on obrr roles and expectations. the complexity includes the crisis being managed and also how process, communication, role and training influence what actually happens. as different stakeholders interact, tension occurs as stakeholder roles are negotiated. one example of this was when midwives felt residents did not understand how to work with the midwives. each role had its own responsibilities and all stakeholders were committed to the wellbeing of the patient but how that interaction occurred was sometimes messy and complicated and misunderstood. in addition to the culture is the fact that the composition of the team is virtually never the same creating different knowledges, capacities, and configurations, which emerge in discursive work as individuals interact in the obrr. the actions and stories of each at least partly construct the responses of the other stakeholders such as when stories told by midwives emphasized how they communicated with the patients and ma/hucs felt midwives took too long to call the rr. additionally, because of the fluid nature of the knot some forms of participation may resist fixation and invite more frequent re-negotiation than other types of rrts. this is especially true of interns and the frequency with which they change. because of this, the training component becomes critical in order to explicitly signal the discursive work they are doing by promoting and modeling critical attunement to language and negotiation between overlapping discursive communities and how to span boundaries. further complicating the productive activity of caring for patients, are the tightening and loosening of tensions or knotswithin the obrr. knotpulsations occurred when different stakeholders had different definitions about what the come now call for obrr meant. different power levels affected definitions as well. when a doctor said come now everyone came. when an ma/huc said come now it was not always seen as an emergency. srns sometimes called an obrr and physicians then yelled at them later because the physician did not feel the call was warranted. translating those terms and procedures into common language was an important step that occurred after focus groups were over, problem areas had been identified, and pinch points identified. understanding knotworking actions can help improve the process of obrr by identifying particular places that knots may occur. while engestrom’s18 five participant agentic actions are evident in the obrr team, this study demonstrates that the five actions occur but they may in occur in stages. focus group comments exhibit the actions of resisting the interventionist or management through questioning statements of frustration. the second action, explicating new possibilities or potential in the activity, is evident in the stakeholder role of ccrns as they explained what was going on as obrr teams worked together and looking at the process in varied ways. the third action, envisioning new patterns or models of the activity was more apparent in the stakeholder roles of physicians. the comments identify new areas for improving the team. such comments indicate the possibility of making changes possible whereas those with less power, even when envisioning, are looking towards those with more power to actually make the changes possible. the first three actions are manifest in focus groups; however, the last two only became evident later on as the first three actions were analyzed for ways to improve the obrr. prior to this point, stakeholders voiced opinions separately but not collectively. the collaborative point occurred when discussions took place based on the focus groups, specific changes were recognized and agreement was reached on what changes to implement. step five, taking consequential actions to change the activity, occurred after changes were agreed upon by stakeholder groups and the changes continued to happen. actions were implemented carefully and thoughtfully to help make the obrr team more effective both in patient care and in communication among stakeholder roles and stakeholder satisfaction. the findings of this study indicate that rrts can get better at understanding and training. resistance, explicating, envisioning, committing to action, and changing the activity were demonstrated both in the focus groups and in follow-up activity. the stakeholders struggled to i) make sense of what happens in the knots; ii) improvise collaborative practices; iii) negotiate [qualitative research in medicine & healthcare 2017; 1:7115] [page 135] article no nco mm er cia l u se on ly colliding knowledge systems and interests of multiple identities and roles. some of the resisting helped later negotiations by aiding in understanding what was happening. for example, ob residents voiced opinions about the value of the obrr; however, they did not want the chaos that happens when the actual obrr is called. understanding what is seen as value and what is seen as chaos helps to develop action plans for changing the activity in the future. viewing obrr teams as knots helps to reconceptualize possibilities for training and procedures for other types of emergency response teams. this finding supports the fact that the actors in the obrr found knotworking and its implications for understanding the process as useful. leach and mayo3 bemoan the lack of process research in crisis teams. this study demonstrates the importance of such study. process issues are inherent in every aspect of the obrr. process, communication, role and training are all themes which emerge from the focus group comments. power struggles occur at varying levels within the knot and need to be negotiated over and over. blackler and mcdonald19 (p. 840) identify power in knots as both an ongoing product and medium for collaborative activity. they go on to suggest that studying power in knots helps identify what is normal, and how new configurations and disruptions are negotiated. this study validates the need for negotiating power relationships in order for rr groups to succeed. in our research, those with power over time quit talking about issues: they do not need to discuss power because they already have power. lower power stakeholders do not speak because they do not see that they have power. for example, one of the researchers suggested to the nurses that they speak up. the researcher’s claim that the nurses have power is possibly correct. however, telling the nurses to speak up is not useful if they do not believe they can. power imbalances are normal and inherent in medical settings. in obrr normal channels of workflow are disrupted, and stakeholders are expected (even encouraged) to work at a high level of autonomy and to support the team effort. one of the issues with a rr process is the move away from the routine interaction patterns in a hospital setting. this is when the hierarchy of the hospital culture becomes an impediment such as when ob residents may have limited experience as compared to many of the nurses; however, in the current hierarchical hospital culture, they are considered more authoritative. conclusions when viewed through the lens of activity and knotworking theory, rrts become more understandable. the dominant concern of rrts – process, or having a successful outcome as a result of what happens during the rrt – indicates that knotworking’s ability to analyze and understand roles and processes within rrts could be critical to improving the quality of such rrts. taking individual elements such as stakeholders or divisions of labor yields a partial picture, but does not demonstrate the pulsing, everchanging aspect of teams, which come together with specific roles and stakeholders. a single-minded focus on training for system errors may miss important pulsations beyond written and practiced protocol such as how and when the obrr is being called. such pulsations may include a nurse wanting to push the button but not wanting to get yelled at, or being comfortable with the expectation that they need to play a more active role in monitoring the tone and flow of the team during an emergency instead of handing off to a physician. the application of activity and knotworking theory to the healthcare environment is promising because it helps providers move beyond just a basic understanding of teamwork to an understanding of the motivations that occur within that teamwork, how stakeholders enact resistance and explain the situation, and ultimately how they commit to change and then enact those changes. such a move is necessary to go beyond tracking and reporting outcomes to understand why sometimes routine interaction patterns do not work and why some stakeholders do not adapt well to varying circumstances. with this understanding, training programs and interventions could occur which would help providers reconfigure rrts, train, and increase knowledge sharing to reduce patient harm. the use of focus groups was helpful in developing understanding of what happens in teams, however it was also a limitation. this was an exploratory study and was limited to people’s perceptions without observations to substantiate those perceptions. while knotworking and activity theory have obvious benefit in understanding – and by extension, improving – group dynamics in the rrt setting, researchers and leaders can apply these principles in many more critical settings, such as law enforcement task forces, natural disaster relief efforts, search and rescue operations, or other types of emergency responses. often leaders of rrts focus on step-by-step training but not on where pulsations and knots occur. such teams are complicated, involving multiple roles and ever-changing personnel. an understanding of knotworking can help rrt teams understand where knots might occur and anticipate not only problems that are already occurring but how even envisioning future events can create misunderstanding and knots. future research needs to focus on how each aspect of the knot can be examined to determine if there are particular times or emergencies that certain types of knots occur and with which stakeholders. actual observations could help to validate or refute the types of recollections that occurred in these focus groups. a follow-up, longitudinal study could also determine if raising awareness of the fluidity of roles and power makes a difference in practice over time. 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[qualitative research in medicine & healthcare 2017; 1:7115] [page 137] article no nco mm er cia l u se on ly layout 1 introduction every ten years, healthy people, a nation-wide initiative housed in the office of disease prevention and health promotion, issues a set of national health benchmarks for improving the health of people in the united states. the most recent iteration, healthy people 2020, introduced a number of new objectives, including a focus on improving the safety, health, and well-being of lesbian, gay, bisexual, and trans (lgbt) individuals. according to the rationale for the new lgbt health objective, eliminating lgbt health disparities and enhancing efforts to improve lgbt health are necessary to ensure that lgbt individuals can lead long, healthy lives.1 despite the inclusion of lgbt health in healthy people 2020, little research on lgbt individuals’ healthcare experiences has been conducted, particularly in health communication. in their study on men who have sex with men, mimiaga, goldhammer, belanoff, tetu, and mayer explain, to date, most [studies] have reported on sexual orientation differences in the prevalence of psychiatric disorders, and a handful have explored other health issues (e.g., tobacco use, healthcare access, violence victimization, and chronic disease).2 these studies have been limiting because their focus is on how lgb bodies are less than heterosexual bodies. further, current sexuality health literature more heavily features gay men, and gives significantly less attention to the health concerns of lesbian women.3 additionally, when discussing gay men’s health, a majority of the research specifically focuses on hiv/aids and/or sexually transmitted infections within the population.3,4 while this research is necessary, overly emphasizing sexually transmitted infections and hiv/aids can perpetuate stigma for the lgb community and is missing out on the larger experience of lgb healthcare.5 the limited health literature examining lgbt individuals and health has primarily focused on disorders and health outcomes. although there is research examining how providers work with and care for lgbt patients, little comwaiting for the doctor to ask: influencers of lesbian, gay, and bisexual identity disclosure to healthcare providers nicole c. hudak,1 heather j. carmack2 1school of communication studies, ohio university, athens, oh; 2department of communication studies, university of alabama, tuscaloosa, al, usa abstract lesbian, gay, and bisexual (lgb) individuals encounter multiple barriers in healthcare, resulting in problematic care. many lgb patients wrestle with whether to disclose their sexuality to healthcare providers. this article explored what influences lgb patients’ decision to disclose their sexuality to healthcare providers. guided by communication privacy management theory, the authors conducted in-depth interviews with 20 lgb patients. lgb patients heavily relied on boundary management when negotiating the disclosure of their sexuality. the findings suggest several factors influence lgb patients’ disclosure of sexuality: i) experience with family; ii) fear of gossip and connections; iii) concern for provider care refusal; iv) religion; v) age; and vi) level of trust with providers. boundary turbulence can be created between patient and provider when there is uncertainty about if and when sexuality is considered private information. additionally, a site of tension for lgb patients was their concern about providers sharing private information outside the clinic setting. correspondence: nicole c. hudak, school of communication studies, schoonover center ohio university, athens oh 457012979, usa. tel.: 740.593.4883 – fax: 740.593.0459. e-mail: nh017915@ohio.edu key words: communication; medical; disclosure; decision-making; gay; lesbian; bisexual; relationships; patient-provider. contributions: nch was the primary researcher and author. she conducted the interviews and wrote the manuscript. hjc served as nch’s thesis advisor. she oversaw nch data collection, analysis, and write-up. she edited the manuscript. conflict of interest: the authors declare no potential conflict of interest. funding: none. conference presentation: this manuscript is based on work from ms. hudak’s master’s thesis. a version of this manuscript was presented at the 2016 meeting of the eastern communication association in boston, ma. received for publication: 11 november 2017. revision received: 7 april 2018. accepted for publication: 8 april 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright n.c. hudak and h.j. carmack, 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:20-29 doi:10.4081/qrmh.2018.7157 [page 20] [qualitative research in medicine & healthcare 2018; 2:7157] qualitative research in medicine & healthcare 2018; volume 2:20-29 no nco mm er cia l u se on ly munication research examines the communication practices between lgbt patients and providers.6-9 little is known about the communication experiences between lgbt patients and providers. assumptions of heteronormativity appear to negatively influence lgb individuals’ health communication decisions, trust in providers, and disclosure of health information to providers.8 this may impact providers’ ability to successfully care for lgbt patients because if a patient does not trust their provider, they may be less likely to provide important medical information. patients’ disclosure of their lgbt identity is important to counter heteronormativity in healthcare interactions. if lgbt patients never disclose their identity, providers can keep assuming that all of their patients are heterosexual. previous qualitative health and communication researchers have studied the disclosure of various health illnesses to partners, family members, and providers.10-15 some scholarship has started to look at disclosing sexuality in healthcare settings, but the researchers operated under the assumption that lgb patients will disclose their sexuality.9 while disclosure patterns are important, there also needs to be a discussion on how lgb patients choose to disclose their sexuality to their healthcare providers. by understanding patients’ accounting of reasons for why they may or may not disclose, providers can work to facilitate open disclosures with their lgb patients. this article is designed to serve as a step in addressing lgbt identity disclosure in healthcare by examining how lgb patients decide to reveal their sexual identity to their healthcare providers. because the authors are interested in sexual identity disclosure, we are only focusing on lgb individuals. we begin by discussing lgb sexuality and identity disclosures, turning to communication privacy management theory16 to offer a vocabulary to make sense of participants’ experiences. after discussing our methodology, we identify the factors that influence lgb patients’ disclosure decisions. finally, we examine the implications of these findings on patient-provider communication. disclosing lesbian-gay-bisexual sexuality the act of informing another person of one’s personal information, such as sexual identity, is called disclosure.17,18 according to bjorkman and malterud17 disclosure can be medically relevant, even in unexpected ways. for example, a patient may require sleeping pills because of a recent breakup with a same-sex partner. in informing the provider, the patient may not want to use pronouns when referring to their partner. even with the recognition that disclosure can be important, the choice to disclose is not always easy. this is particularly the case for lesbian women who feel that their sexuality is not apparent to their provider.17 in austin’s18 study, 40% of lesbian women chose not to disclose their sexuality to their doctor. many lesbian women were anxious about whether to disclose their sexual orientation for fear that they would be mistreated or denied care. without the patient disclosing, providers may offer inappropriate or poor medical advice, diagnosis, and treatment options to lgb patients. for example, a provider recommending that a lesbian woman use birth control as a form of protected sex would be inappropriate and would not deal with sexual health in a way that is relevant to her life. sexuality disclosure does not solely rest with the lgb individual. providers also have the opportunity to initiate conversations about sexuality. however, researchers have found that many doctors do not address their patients’ sexuality. kitts19 found that, although 64% of doctors did ask about the gender identities of their patients’ partners, only 29% regularly talk about sexual orientation, 11% would discuss sexual attraction, and 8.5% talk about gender identity. these physicians identify a number of reasons for not talking about sexual orientation when discussing a patient’s sexual history: 42% of the respondents said it was not significant, and 18% said they just forgot to discuss it.19 according to kitt,19 providers were not clear or comfortable discussing patient’s sexuality; only 44% of physicians agreed or strongly agreed that they had the skills to discuss sexual orientation, 51% disagreed or strongly disagreed that they had the skills to discuss sexual orientation, and 6% reported that they did not know if they had the skills to discuss sexual orientation,19 in part because many providers said they do not understand sexual orientation. instead, physicians preferred patients bring up the topic or hoped that sexual orientation would become obvious during the medical interview or in conversations about stds and birth control.19 regardless of whether providers feel they have the tools to discuss sexual orientation, the inclusion of lgb discourse in healthcare from the provider perspective is lacking. labig and peterson20 found that very few doctors included questions about sexual orientation in their patient profile, and none of the doctors in their study posted lgb related literature in their offices. furthermore, less than 20% of the physicians brought up medical conditions that were relevant to their patients’ sexual practices. healthcare providers avoid asking about sexual orientation for a number of reasons:20 they feel like they do not have time to discuss it, they feel uncomfortable about the issue, they have preconceived notions of sexuality, or they are unsure how to work with this minority group.20 these factors contribute to a don’t ask, don’t tell mentality: lgb individuals do not disclose their sexuality, and providers do not ask about sexuality during healthcare interactions. disclosing sexuality to a healthcare provider has consequences. the current belief about disclosure in a medical setting is that disclosure will only benefit a situation, while not disclosing only involves risks.21 however, there are both benefits and risks for disclosing sexual orientation. one benefit lesbian women identify about disclosing their sexual identity to their doctor is that they believe their doctors see them as a whole person, which creates a comfortable and inviting clinic atmosphere and helps them feel more connected with their doctor.17 importantly, [qualitative research in medicine & healthcare 2018; 2:7157] [page 21] article no nco mm er cia l u se on ly the impact of this positive atmosphere and satisfaction/ connection with their doctor is that it can lead to more preventative health screening. for lesbian women, disclosure is sometimes necessary for the correct diagnosis of gynecological and reproductive medical issues.17 for example, when a healthcare provider is inquiring about an issue that could be related to pregnancy, a lesbian woman may need to clarify that she only engages in sex with women, and cannot be pregnant. finally, awareness of a patient’s sexuality can allow for same-sex partners to be included in medical decision-making.17 the ability to disclose sexual orientation to providers can result in positive patient-provider relationships and patient satisfaction. for example, labig and peterson20 found that of lgb patients who disclosed their sexual orientation to their doctor, 86% felt comfortable with their primary care physician and did not feel the need to change providers. although disclosure is generally framed as a positive experience, there are still risks associated with disclosing sexuality to healthcare providers. lgb individuals fear basic discriminatory reactions from their doctors for disclosing their sexuality. the risks of disclosure can be very high for lgb individuals, including the refusal of healthcare (some states do not protect lgbtq patients from care denial), intimidation by healthcare providers, breaches in confidentiality, patient embarrassment over having to disclose their sexuality, and fear of homophobic remarks.21,22 even if a provider does not deny care, there is still a concern that lgb patients’ sexuality disclosure will change the direction of the communication experience, with the focus moving from the medical reason for the visit to a singular focus on their sexuality.17 communication privacy management people are constantly making decisions about what private information to reveal, who should be allowed to have this information, and the ways to reveal this information.16 these tensions about private disclosure exist in every relationship because individuals express the need to share information, as well as protect themselves from certain information. sandra petronio’s16 communication privacy management (cpm) theory examines the tensions and dilemmas that exist in interpersonal relationships when considering the openness and privacy of information within a relationship. the fundamental premise of the theory is that individuals have a right to own and regulate who has access to their private information.16 cpm functions as a privacy management system, which identifies the ways that privacy boundaries are created and managed between individuals. privacy boundaries contain the information that individuals choose to label as private; these boundaries are not set up solely by an individual, but are constantly negotiated between individuals. in certain cases, private information is never shared with others.16 in other situations, boundaries shift, and this can lead to the opening or closing of boundaries.16 a criterion of cpm is that private disclosures are viewed as dialectical. this means that they require conversation and negotiation. disclosure is not an individual’s decision. rather, it is regulated by a metaphorical relational contract where both individuals balance an equal number of costs and rewards.16 for example, a patient deciding to disclose her sexual identity to a provider must take weigh the potential benefit of increased open communication with the potential for discrimination from a provider. health communication scholars have utilized cpm to study disclosure in patient-provider interactions.15,23 in healthcare settings, patients and providers become co-owners of private health information. petronio and sargent23 studied the privacy management strategies of nurses at critical care and emergency units at a hospital. perspectives on privacy management seem to be different for the patient and for the provider, as nurses value their status as co-owners of private information.23 nurses were expected to keep their patients’ information confidential and appreciated their co-ownership status of that information. carmack15 examined how nurses on a mobile health clinic navigated health disclosures in spaces where it was difficult to maintain privacy. the nurses of the mobile health clinic also valued their status as co-owners of patients’ private information, and engineered unique ways to maintain that information. the same is true of disclosing sexual identity to health providers. once a lgb patient discloses their sexual identity, the information is co-owned by the patient and provider. how this information is used by providers can impact the developing patient-provider relationship. disclosing sexuality to providers is not always easy and can impact both the lgb patient and healthcare provider. lgb individuals typically must decide if, how, and/or when they want to disclose their sexuality to their providers. this article draws on communication privacy management by looking at what influences lgb individuals’ negotiation of privacy management with their healthcare providers about their sexuality. given this complexity, the present article was guided by the research question: what influences lgb patients’ choice to disclose their sexuality to their healthcare providers? methods participants the first author interviewed 20 lgb patients for this article. while the original call for participants asked for lgb, anyone who did not identify as heterosexual was able to participate. participants were asked to provide a label for their sexual identity. they labeled themselves as gay (n=9, 45%), lesbian (n=6, 30%), bisexual (n=2, 10%), queer (n=2; 10%), and pansexual (n=1, 5%). participants’ ages ranged from 22 to 51 (m=32.9). nineteen participants identified as caucasian and one participant identified as african american. all of the participants lived in [page 22] [qualitative research in medicine & healthcare 2018; 2:7157] article no nco mm er cia l u se on ly the united states. nine participants were from the midatlantic region (45%), four were from the northeast (20%), one was from the pacific northwest (5%), one was from the southeast (5%), three were from the midwest (15%), and two were from the southwest (10%). recruitment began after the authors received university institutional research board approval. the first author recruited participants using criterion sampling21 with a focus on lgb individuals. the distinction of what type of identity being disclosed is crucial when looking at healthcare because lesbian, gay, and bisexual individuals can choose whether to disclose their sexual orientation to their healthcare provider; however, if trans individuals want to receive adequate and appropriate healthcare, they have to disclose their trans identity.24 in order to respect the distinction between the two identities of sexual and gender identity, this article specifically focuses on sexual identity, or how individuals define their sexuality based on what gender to which they are sexually attracted to. additionally, participants needed to have visited a healthcare provider to receive care within the past three years. participant recruiting occurred in two waves. first, an email call for participants was sent on a mid-atlantic university’s lgbt faculty listserv and a call for participants was posted on the first author’s facebook page. in the second round of recruitment, another post was listed on the lgbt faculty listserv and on facebook. the call for participants was also posted on crtnet, the national communication association disciplinary listserv. faculty listserv participants contacted the first author via email to set up in-person interviews. the participants recruited via facebook and crtnet contacted the first author via email to set up skype or phone interviews. data collection and analysis qualitative interviewing was used as the primary method for this study. qualitative interviewing allows researchers to understand a participant’s experience, gather information about things or processes that cannot be observed in real time, and inquire about the past.25 qualitative interviews provide the researcher with the opportunity for deeper and broader immersion into a subject area.25 in-depth interviews allow participants to provide rich, detailed answers and afford the interviewer the opportunity to ask follow-up questions.26,27 the interview protocol was semi-structured28 to ensure flexibility in adding additional, relevant questions for the participants. questions in the protocol covered several different areas. the first set of questions was meant to gather demographic information about participants, including their age, where they were from, racial identity, and sexual identity. participants were allowed to provide their own labels for their identities. a second set of questions were developed to obtain what type of healthcare (primary care, counseling, gynecology, etc.) the participants had sought, how often they sought out those types of healthcare, and how satisfied they were with their current healthcare. the third set of questions explored their sexuality disclosure experiences. additionally, questions were asked about their opinions on how to discuss sexuality with healthcare providers. the final set of questions were about their romantic partners’ interactions in healthcare settings. individual in-depth interviews were conducted in person (n=13), on the phone (n=5), and via skype (n=2). interviews ranged from 35 to 61 minutes and were audio recorded. the recordings were transcribed verbatim, resulting in 312 single-spaced typed pages of data. participants were assigned pseudonyms to maintain confidentiality. the first author engaged in an inductive iterative method of data analysis.29 during the interview process, the first author made note of potential categories, allowing her to constantly compare and adapt categories as she conducted interviews. by comparing categories throughout the process, potential themes were being developed. once all of the interviews were collected and transcribed, the first author read through the transcripts multiple times to gain a holistic understanding of the data.25 the first author open-coded the data by making notes of patterns in the transcripts; this involved identifying categories and crystalizing them into themes. communication privacy management (cpm) emerged as a theoretical framework during the analysis process to help frame and make sense of the results. the first author consulted with the second author as a way to confirm the presence of themes and to support her analysis process.29 direct quotations from participants were used to further demonstrate theoretical depth;29 quotations were selected for their forcefulness, repetition, and recurrence of ideas.30 results there was no single determinant of whether lgb individuals would disclose their sexuality to their provider. multiple factors simultaneously influenced patients’ decisions to reveal their sexual identity. these factors were related to past coming-out experiences, experiences with their healthcare providers, and their social demographics. six decision factors emerged from the data: i) experience with family; ii) fear of gossip and connections; iii) concern for provider care refusal; iv) religion; v) age; and vi) level of trust with providers. experience with family participants strongly connected their family members’ reactions to their coming out conversations to their decision to come out to their healthcare providers. if the participant did not have a positive coming out experience with their family, they were hesitant to discuss their sexual identity with the provider. when pete talked about his coming out experience with his parents, he said, it was an accident they found [qualitative research in medicine & healthcare 2018; 2:7157] [page 23] article no nco mm er cia l u se on ly out. it’s a pretty sad story…but they found out without my choosing and i didn’t come out for a while after that as a result...because of the negative reactions i have received in the past, it’s kind of marred my openness personally. as pete explained, this negative experience made him wary of potential negative reactions from providers. he would even lie about past sexual partners or sexual preferences in order to keep information about his sexual identity from his provider. grady also had a negative experience coming out to his family. grady mentioned his family was connected to the local medical system and he connected most of the regional healthcare providers to his family. he stated, i would worry that it could impact my healthcare, receiving or something, or i’d be known as the gay person at the hospital. he noted his family’s connection to the hospital multiple times. he said, my family’s somehow oddly connected to healthcare, which then influenced his choice to not come out to providers in that area. for some participants, coming out to their parents or immediate family was positive; however, it can still make patients weary about disclosing to providers. even the smallest amount of negativity can influence how a person feels someone is going to react to disclosure. sonya’s parents told her that they were okay with her identifying as a lesbian, but her extended family members may not be. although sonya’s immediate family does not seem to have a problem with her sexuality, the hesitation to inform other family members seemed to effect how she thought her relationship with her medical provider would be affected by her coming out. she explained: i do get a little bit of anxiety about them [providers] asking about sexual orientation. well not so much sexual orientation, but asking about being sexually active or things like that. i’m a hard core people pleaser and i hate making people unhappy or making people awkward. so more times than not i’m nervous that telling someone about being gay. i understand there are people in the world who are not okay with it. i don’t want to make things awkward. i don’t want them to like not like me. although sonya stated that she was not extremely worried about disclosing her sexual orientation, she was still worried about potential negative reactions from providers about her same-sex practices and if providers would dislike her for those practices. those who had complicated coming out processes with their family showed similar hesitation in coming out to certain providers. for these participants, familial reactions to their coming out clearly impacted their decision to disclose their sexuality to healthcare providers. fear of gossip and connections several participants expressed that they were from small towns and had personal connections to the healthcare providers in those areas, increasing their hesitancy about disclosing their sexuality to providers. they were concerned that the providers might gossip about their sexual practices or sexual orientation to others in the area, potentially outing them in the community. grady mentioned, i come from a small town and there’s only one doctor, so like, he doesn’t need to know all my business. for grady, it was not just about the small town, but his connection to his provider’s son and how his provider was a friend of his parents. grady further stated, i like not talking sex with my main healthcare provider, ‘cuz i’m friends with his son. we played soccer together when we were young and my parents went out to dinner with them every couple of months. this balancing community relationships and provider relationships prevented grady from being open about his sexual practices with his general practitioner, and this was one of the reasons he sought out sti testing from another medical source. parental connections were frequently mentioned in interviews of participants who were in their twenties. regardless of whether their parents knew about their sexual identity, participants were concerned about discussions of their sexual identity that were outside of their control. it did not matter whether or not the participant’s parents already knew about their child’s sexuality. like grady, sonya was nervous about revealing her sexuality to her provider because of a provider-parent connection: well i felt really awkward about it because i mean even though my parents know, my parents go to the same doctor, so like, just because she knew the rest of my family, i was kind of a little nervous about saying [it] to her. participants were hesitant about revealing their sexuality to their providers because they were afraid that their providers would discuss their sexuality or sexual information with people that they knew outside of the healthcare setting. concern for provider care refusal when talking about coming out to providers, some participants made it a point to come out to their providers while others disclosed because of providers’ questions. however, for several participants, the topic of sexuality was never discussed because providers did not even bring up the topic of sexual health. danny described a great connection he had with his general practitioner, of whom he had grown very fond. however, when asked if he had come out to his general practitioner, danny realized that he had not. he explained, i guess i was kind of waiting for her to ask. although danny enjoyed the relationship he had with his provider, he did not feel as though he could bring up his sexuality without the provider creating space for that conversation. danny struggled with why rationalizing why he did not come out to his provider and said he worried about ruining their good relationship. she felt like a friend, i didn’t want to ruin that. i haven’t always had a general physicians who were that welcoming and i didn’t want that to suddenly [page 24] [qualitative research in medicine & healthcare 2018; 2:7157] article no nco mm er cia l u se on ly stop. because of danny’s uncertainty, he was therefore waiting for his provider to ask, providing him with a space to know that the conversation was allowed and would not ruin their current relationship. many participants believed their healthcare providers should initiate conversations about sexuality and sexual health. like danny, another participant, garrett, stated, i feel like if i was just seeing my general practitioner, it’s not something that i talk about and i feel sort of, like, they could choose to bring it up if they wanted. although garrett did not express interest in discussing his sexual health or sexuality with his general practitioner, he later explained that even if he wanted to talk about it, he did not have the power to do so. you don’t really have the ability to just bring something up because you’re not in that position. they’re the doctor, they have their md, they’re treating you so they have the power in that situation to sort of choose what topics are relevant to your healthcare. garrett’s comment speaks directly to the power that providers have in the patient-provider relationship. also, garrett’s words make evident how the provider may have the control over whether or not sexuality can be considered relevant to a person’s healthcare. by the provider controlling whether sexual identity is relevant, lgb patients remain uncertain about whether they have the ability to disclose that identity. another participant, clifton, eventually came out to his general practitioner. but, during one of his earlier appointments when he sought medical advice about a concern related to a potential sti. clifton explained, i went in to go see him and they [bumps] were nothing but he at no point asked about my sexual activity. if providers do not engage in conversations with their patients about sexual health or sexuality, the patients may not feel as though they are able to ask relevant questions or even feel comfortable bringing up the conversation on their own. religion the religious beliefs of lgb patients and providers also influenced participants’ decision to disclose their sexuality. in some cases, providers’ religious beliefs were expressed in casual ways not related to sexuality. however, the tone of the comments concerned participants and impacted their decisions to disclose. garrett visited a provider in his hometown who could administer his allergy medication, and he became uncomfortable with that provider because of how she expressed her religious beliefs during his appointments. i have a tattoo of a buddhist prayer and this most recent time she was like, oh why do you have that? and i said something about getting it when i was younger, because i didn’t want to go into it with her. she was like, oh it was when you were younger and didn’t know the right way, or something like that. it feels a little invalidating sometimes. while the provider never spoke specifically against lgb individuals, garrett felt that her religious influence was so strong that he could never broach that conversation with her. a history of religious intolerance of diverse sexual identities can then act as a barrier for disclosure between patient and provider because the lgb patient may fear discrimination based on their sexual identity. similarly, when grady discussed his sexual practices with his provider, he stated, i think the doctor had like, a big cross or something necklace and i was like, ‘ehhh i’m not going to talk to you about this.’ even if a provider does not openly discuss his or her religious beliefs with patients, a simple religious symbol could deter lgb patients from disclosing their sexuality. upon seeing the religious symbol or a provider expressing a religious belief, a lgb patient may then immediately distrust their provider and fear discrimination if they disclose their sexual identity. beyond identifying and expressing religious beliefs, healthcare providers may even alter their healthcare practices based on their religion, which was the case for amelia. amelia told the story of a past general practitioner she visited who had strict limitations on what type of medicine she would prescribe to her patients. she explained, i didn’t realize until after i had started seeing her that she was catholic, in a way that she wouldn’t prescribe any sort of birth control and that sort of thing. although amelia did not need to receive birth control from her general practitioner, the provider made her wary. i was concerned that she wouldn’t be able to really continue being my doctor and give me the best medical advice because it [religion] seemed to be such a barrier for her.although many women are concerned about religion and birth control, amelia was hesitant to discuss this with her provider because she was concerned about her reaction to her sexuality: i was concerned about the associated view she would have with [my] sexuality. a strong religious expression can either keep lgb individuals from disclosing sexuality and sexual practices or prevent them from seeing that provider altogether. by seeing a religious symbol or hearing a provider express their religious beliefs, lgb patients may then decide that it is best to not disclose their sexual identity for fear of discrimination based on those religious beliefs. they may also then decide to not go back to that specific provider because they do not want to continually fear discrimination. age the participants varied greatly in age, and that difference demonstrated how age influenced their decision to disclose their sexuality to healthcare providers. most of the participants in their twenties had only recently come out (within the past couple of years) and were more hesitant about discussing healthcare, and more specifically, how their sexuality related to the healthcare they received. on the other hand, the participants in their late thirties to [qualitative research in medicine & healthcare 2018; 2:7157] [page 25] article no nco mm er cia l u se on ly early fifties were generally more open about their sexuality and communicated about their sexuality with greater ease. throughout the interviews, participants who were younger would often express uncertainty about expressing sexual identity. in turn, those who were over the age of thirty, would express openness of their sexual identity. younger participants would often remove themselves from the conversation and discuss the discomfort of disclosing from an impersonal stance. in offering suggestions to healthcare providers, pete, for instance, recommended that practitioners make sure they take the time to create the relationship, because young, scared, confused teenagers are not going to disclose that unless they feel comfortable. he did not want to discuss himself as a confused teenager. instead, he displaced those feelings onto fictitious future patients. pete took displacement a step further when he addressed those adults who have an easier time disclosing their sexuality: adults are just more comfortable in themselves and their bodies and who they are; they’ve had time to go through those awkward phases. by taking an impersonal stance, pete projected a discomfort in his own sexual identity and placed the reasoning on age by expressing how adults are more comfortable with themselves. similar to pete, sonya was not able to take on a diverse sexual identity with ease and displaced her feelings onto discussions of her girlfriend. she has been out for a long time, she’s, i’m trying to think, she’s 24 and she has been out since she was, i think 19, so she’s like a 110% comfortable in, like, openly saying it and doesn’t think anything of it. although sonya would say things like, if someone asked i would say it, she separated herself from her partner by comparing herself to her current partner. by talking about how her partner is extremely comfortable and open, she positions herself in a juxtaposition where she is not like her partner, expressing potential discomfort. younger lgb individuals may have recently come out for the first time, and therefore, may be getting used to their newfound identity, creating a discomfort in openly disclosing their sexuality. participants who had been out for longer periods of time explained that when they were younger, they would not have been as comfortable as they are now discussing sexuality. when talking about disclosing to healthcare providers, jeannette, for instance, said, i don’t think i would have done that as a younger person as much as i was willing to do it as a more adult person. although jeannette suggested some lingering hesitations, she still mentioned how her maturity aided her in her ability to disclose her sexuality to her provider. kent further explained, i think i certainly would have...in my younger days, if a doctor had ever said anything, absolutely i would have lied. even if asked by providers, younger lgb individuals may go beyond simply refusing to disclose. they may actively lie to providers because of their discomfort in their sexuality. level of trust with providers another significant factor concerning whether patients were willing to disclose sexuality to their providers relates to whether they trusted their providers. some of the participants explained that they needed to have established a rapport with their provider in order to feel comfortable disclosing their sexuality to them. disclosing sexuality is a vulnerable communication experience, and as hannah and pete emphasize, they need to feel a sense of trust in order to be vulnerable and open with their providers. hannah explained, if it was someone i didn’t feel was very trustworthy, or gave me a weird vibe, or if maybe it was a man, i don’t know if i would have been as comfortable doing that. pete, who was already hesitant in coming out because of his experience with his parents, said, i definitely wasn’t feeling the trust with my doctor to tell him that i identified as bisexual. for participants, trust was associated with how welcomed they felt at the provider’s office. to these lgb patients, trust could not be established if they did not feel they belonged in the healthcare space. according to greta, if they [lgb individuals] don’t sense a welcoming atmosphere, they’re generally not going to disclose themselves if given the chance to their provider. whenever a positive rapport was established between a lgb individual and provider, there was a sense of trust and comfort that allowed for them to be open and honest about their sexuality. tim said, the comfort level that i have just in that particular environment, like i don’t have to hide, i don’t have to make things up, pretend i’m somebody i’m not. discussion this study is concerned with the factors that influence lgb patients’ sexuality disclosure to their providers. participants identified several influencers that relate to the negotiation of communication boundaries. participants were heavily influenced by past experiences they had communicating about their sexuality, perceived bias, and the patient-provider relationship. interestingly, the data reveal that, as lgb patients age, they are more confident about disclosing their sexual identities to their providers. perhaps they become more comfortable over time because they have just had to disclose their sexual identity more often. after a while, the act of disclosure becomes easier because there have been more experiences in the types of disclosure. first, lgb individuals may not have been hesitant about disclosing their sexuality because they see sexual identity as public information. however, they may have been uncertain about how their healthcare provider felt about receiving that information, especially if providers treat sexuality as private information. petronio16 explained that for there to be boundary management, the person revealing the information has to define that information as [page 26] [qualitative research in medicine & healthcare 2018; 2:7157] article no nco mm er cia l u se on ly private. the tension here lies in whether sexuality is private or public information. while most of the participants viewed their sexuality as public information, it is possible they believe healthcare providers viewed sexuality as private information (in other words, as information that does not need to be disclosed). cpm does not discuss what happens when there is a misunderstanding about whether information is private. privacy is often violated because the owner of the information believes it is private. in this case, the person who owns the information (the lgb patient) does not see his or her sexuality as private. but, what happens when patients enter a healthcare setting with information they see as public and open for discussion? how should patients and providers coordinate the disclosure of that information? second, since boundary rules cannot be established by a singular person,16 lgb patients may have been waiting for providers to initiate a conversation about sexuality or the gender(s) of their sexual partner(s), and that is why some of them did not disclose on their own. whereas lgb individuals may take control and establish communication boundary rules in other situations, the power dynamics present in patient-provider relationships serve an important role in the interaction. certain participants openly recognized that their providers had the power in their appointments to determine and drive the healthcare conversation, including the disclosure, or lack of disclosure of sexual identity. participants expressed that they did not feel as though they had the ability to assert themselves in the doctor-patient relationship in order to initiate a conversation about their sexuality. some patients feared their doctor would discriminate against them, or feared that they would simply ruin the relationship that they had already established with their provider. if providers do not bring up sexuality, it may signal to lgb patients that their providers are uncomfortable with or not knowledgeable about the topic. the lack of clarity about who can, and should initiate these conversations create boundary turbulence, which occurs when there is uncertainty about communication expectations.16 this uncertainty is compounded by power differences in the patient-provider relationship. lgb patients clearly indicated they believed providers should start the conversation. if providers remain silent (because of lack of knowledge or comfort with the topic), providers do not create the communicative space to be able to discuss important health information with their patients. successfully negotiating disclosure factors does not mean that lgb patients will ultimately disclose their sexuality to providers. although some of the participants disclosed their sexual identity to their providers, many chose to not disclose, even in the face of it impacting their healthcare experience. those who did not share their sexuality may not have trusted their provider to be a co-owner of the information.16 as we have discussed in this study, mistrust was a primary factor for participants worried about personal connections between their healthcare providers and other family and friends. petronio16 argues, if people feel like there is too great of a risk in disclosing private information, they will ultimately choose not to disclose that information. of course, health insurance portability and accountability act (hipaa) regulations prevent providers from disclosing information with others and none of the participants said that their providers violated hipaa. however, the perceived fear of that communication violation was enough to prevent disclosure. past communication research has found that perceived disclosure violations can negatively impact patients’ desire to continue seeking care.31 this perceived communication violation could contribute to an increased disparity in lgb healthcare. this article identified two ways in which lgb individuals chose not to disclose: lying and manipulating language. if a provider asked about a partner’s sexual history, an lgb person who did not want to share that information simply lied rather than disclose their sexuality. participants also mentioned how it was possible to avoid the disclosure of their sexuality by using gender-neutral language to avoid acknowledging the truth. by not disclosing their sexuality, there was no need to worry about exchanging private information, having their providers being co-owners, or be concerned that providers were violating hipaa by sharing that information with others.16 however, patients should have no need to worry about sharing private information with providers because providers are not allowed to share private information with others. distrust in revealing sexual identity to providers potentially signals a need for more education for patients and providers – hipaa education for patients to know providers are not disclosing their information and communication training for providers to help alleviate patients’ fears. any patient, regardless of sexuality, should not have to worry about a provider discussing their healthcare outside of medical appointments. conclusions although this study sheds light on lgb communication in healthcare, some limitations must be noted. to start, the sample did not have much diversity. first, not all sexual identities were represented. while there were a variety of sexual identities represented in this study, including queer and pansexual, gay men comprised the majority of the participants. a larger sampling could lead to more commonalities and differences amongst different sexual identities. furthermore, there was a lack of racial diversity in the sample. only one of the participants identifies as african-american. more racial and ethnic diversity would allow researchers to discuss issues of intersectionality related to lgb healthcare. the authors also did not ask for participants’ socioeconomic status. having access to a healthcare provider is a form of privilege often not granted to those of a lower socioeconomic status and could be an important factor. [qualitative research in medicine & healthcare 2018; 2:7157] [page 27] article no nco mm er cia l u se on ly second, although the participant call went out on a number of social media platforms, the participants drawn to this study were all university students, staff, or faculty. being part of a university system may provide these participants more resources and access to healthcare. lgb patients who do not attend or work in these kinds of privileged settings or positions may not be able to not seek care from a healthcare provider on a regular basis. their experiences are missing from this study, and need to be examined. third, only the perspectives of lgb patients are presented in this study. while lgb patients’ perspectives are incredibly important, as they are marginalized, including provider perspectives could allow us to paint a more complex picture of how disclosure of sexuality is navigated in the patient-provider relationship and the possible communication barriers that occur. healthcare providers may not be aware of communication barriers, and their perspectives could help to identify communication strategies to improve lgb patients’ healthcare experiences. along with inquiring about the awareness of lgb patients, researchers should examine providers’ knowledge, education, and training about treating lgb patients and how they view the importance of patients disclosing their sexuality. finally, gay and bisexual men consistently brought up the need to be tested for stis and hiv, yet the women rarely mentioned the topic. beyond examining the interaction between healthcare providers and lgb patients, future research should examine how lesbian and bisexual women communicate about stis, the knowledge lesbian and bisexual women have of stis, and how they negotiate safe sex with their sexual partners. understanding their perspectives could create a better understanding of lesbian and bisexual women’s knowledge of stis so that they can communicate relevant safe-sex information to their lesbian and bisexual women patients. as the authors write this article, healthy people 2020 is coming to a close. the advisory committee on national health promotion and disease prevention objectives for 2030 is currently writing the objectives, directions, and outcomes for healthy people 2030. we hope lgbt health is again identified as a priority objective. disclosure of sexual identity is just one part of the picture of lgbt healthcare, but also an important aspect. researchers need to continue studying this community to help in the fight for health equity and equality for lgbt individuals. as the findings from this article show, there is still work to be done to improve the patient-provider communication experiences of lgb patients and it will take patients, providers, advocates, educators, and legislators to make this happen. references 1. healthy people 2020. lesbian, gay, bisexual and transgender health. united states department of health and human services. washington, dc: usdhhs; 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[page 28] [qualitative research in medicine & healthcare 2018; 2:7157] article no nco mm er cia l u se on ly 21. fish j. heterosexism in health and social care. new york, ny: palgrave macmillan; 2006. 22. mayer kh, bradford jb, stall r, et al. sexual and gender minority health: what we know and what needs to be done. am j pub health 2008;98:989-95. 23. petronio s, sargent j. disclosure predicaments arising during the course of patient care: nurses’ privacy management. health commun 2011;26:255-66. 24. parkhill al, mathews jl, fearing s, gainsburg j. a transgender health care panel discussion in a required diversity course. am j pharm educ 2014;78:1-7. 25. lindlof tr, taylor bc. qualitative communication research methods. 3rd ed. thousand oaks, ca: sage publications; 2011. 26. keyton j. communication research: asking questions, finding answers. 2nd ed. new york, ny: mcgraw-hill; 2006. 27. johnson jm. in-depth interviewing. in: gubrium jf, holstein ja, eds. handbook of interview research: context and method. thousand oaks, ca: sage; 2002. pp 103-119. 28. creswell jw. research designs: qualitative, quantitative, and mixed methods approaches. 4th ed. thousand oaks, ca: sage publications; 2014. 29. tracy sj. qualitative quality: eight ‘big-tent’ criteria for excellent qualitative research. qual inq 2010;16:837-51. available from: http://qix.sagepub.com/. 30. owen wf. interpretive themes in relational communication. q j speech 1984;70:274-87. 31. sankar p, mora s, merz jf, jones nl. patient perspectives of medical confidentiality: a review of literature. j gen intern med 2003;18:659-69. [qualitative research in medicine & healthcare 2018; 2:7157] [page 29] article no nco mm er cia l u se on ly layout 1 introduction a previously healthy nurse manager of an outpatient oncology clinic was infected by coronavirus and spent two weeks in intensive care, on the brink of death. this paper shares the insights he has developed from this experience. with his narrative he plans to provide a lively documentation of patient and provider interactions in the course of a life-threatening illness. the management of death is integral part of nursing training.1-3 for patients with metastatic cancer death is still a common outcome and the oncology nurse learns how to prepare to death a patient and his/her loved ones, how to talk about death, and how to recognize and face the reactions of a person informed that his/her life will soon end.4 the author’s history highlights practical aspects of this training that make the relation effective and rewarding. the trajectory of dying originally described by kubler ross5 for patients with chronic diseases may not apply in the course of an acute illness, as fear of the unknown, concern for the loved ones and regret for projects left unfinished may overwhelm all coping mechanisms. the author found comforting the respect of his dignity, the honest and compassionate update of his condition, the constant effort to keep him touch with his family despite infectious isolation, and the acceptance of his request to pray with him by the icu nurses. the lasting lesson he derived from his experience is that healing is possible even when cure is not reachable and it should represent the final goal of every medical intervention. case report april 5th 2020 will remain a landmark in my personal history. ten minutes after my wife placed the call the ambulance arrived. my o2 saturation was 87%, barely compatible with life. the paramedics wasted no time: after putting a breathing mask on my face and an intravenous solution in my arm vein, they loaded me on the stretcher and we left for the closest hospital. true, we were still waiting the results of the test after almost three weeks since the initial symptoms, but there was no question i had a rampant covid-19 infection. as the ambulance was clearing its way with the howls of the siren, i felt overwhelmed by a number of different emotions. no words can describe what i felt. everything had happened so quickly that i had no time to adapt to the situation. also i had a blistering headache that impeded organized thoughts and my temperature had been 103 f the whole day despite heavy doses of acetaminophen. my preponderant emotions were uncertainty and fear. i had an incurable disease with an unpredictable course. i might have died. i might have died without saying goodbye to my family and friends in tampa and around the world. i might have died without seeing the graduation of my children from college; without getting my master degree in nursing, without being able to spend my retirement with my beloved wife enjoying our lives together. from nurse to patient: a journey to healing leo begazo oncology nursing society; clinic operations manager, moffitt cancer center, tampa, fl, usa abstract the nurse manager of an oncology clinic in a major cancer center shares his personal experience as a covid-19 patient with other health care workers. he has spent two weeks in intensive care and found himself on the brink of death. in a lively description, he underlines the aspect of care that contributed to his cure. this included the respect that his caregivers expressed to his values, his love of his family and his religious beliefs. the communication of the caregivers was always honest and compassionate. he learned that love is the strongest motivation to survive in the course of a life-threatening disease and that healing is possible even in the absence of cure. correspondence: leo begazo, moffitt cancer center, 12902 usf magnolia drive, tampa, fl 33612, usa. e-mail: leo.begazo72@gmail.com key words: covid-19; nurse; patient; healing. conflict of interest: the author declares no conflict of interest. ethics approval: not applicable. received for publication: 7 october 2020. accepted for publication: 29 november 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2021 licensee pagepress, italy qualitative research in medicine & healthcare 2021; 5:9689 doi:10.4081/qrmh.2021.9689 [page 6] [qualitative research in medicine & healthcare 2021; 5:9689] qualitative research in medicine & healthcare 2021; volume 5:9689 no nco mm er cia l u se on ly i had been a nurse 26 years and i worked in emergency room and intensive care before becoming a manager of an oncology clinic in a major cancer center. quite often my work had involved rapid decision making in the care of multiple patients and in every circumstance i felt i had the situation under control. i prided myself for being a good leader. for the first time now i had no control of the situation and could not trust that anybody else would be able to take control of this mysterious virus. and what about my family? they had been exposed daily to my cough, to my breaths, to my touch. will they also develop the infection? my wife is my same age. will she survive? and who will take care of them if i die? and of my two children if we both succumb to the disease? before coming to the usa, i had been already a nurse in the peruvian air force where i treated wounded soldiers as result of them fighting rebels in the amazonian jungle. yes, there too i might have died. but it was different. i had procedures to follow, to help save their lives after fighting an enemy that was known. covid-19 instead was an unknown enemy. we just knew that the risk of death increased with the patient age and the presence of comorbid conditions. though i was healthy enough i was overweight and that was a risk factor too. the other recurrent emotion related to the “what if” question. what could have i done different? on march 18th i woke up coughing, hot to touch and with a general feeling of malaise. those were the symptoms of flu. maybe flu was coming a little earlier this year as a consequence of the covid-19 pandemic. my family doctor seemed to agree. still he found advisable to order a covid-19 test. fever and cough persisted for a week and i was becoming every day more fatigued. i could hardly get up from bed. my wife drove me to the emergency room and i was diagnosed with pneumonia and prescribed multiple antibiotics including ciprofloxacin and azithromycin, bed rest and plenty of fluids. even the er doctor hinted that i might have contracted coronavirus and recommended to come back if symptoms had worsened. he did not feel appropriate to admit me to the hospital however, because my condition was stable and the hospitalization might have increased my risk of infection if i was not already infected as well as the risk of transmission to other patients if i were infected. things turned from bad to worse. after three days i became unable to leave the bed and unable to breath. and now i am on my way toward a very uncertain outcome in a rushing ambulance asking for the right of way. three days later the test confirmed the coronavirus infection when everybody was all but certain of it. should i have paid more attention to the initial symptoms? notoriously doctors and nurses ignore symptoms of serious diseases until it is too late. paradoxically, it is our very medical knowledge that allows us to consider alternative, more benign diagnoses. i had met a colleague who delayed by two months the biopsy of a cervical lymphoma as she was convinced to have just a sore throat. i met a doctor who barely made it to the hospital after fainting. his hemoglobin was 5 gm/dl and he was actively bleeding from three gastric ulcers. for three months. he had simply ignored his melena! have my doctor and the er doctor been too cavalier? though i had followed very carefully all the recommendations of the cdc and of our hospital infection management office i could not help asking myself if i had avoided to maintain all possible precautions when rushed to heed the multiple crisis of a very busy clinic. this carelessness would have been unforgivable in our center where we have been provided with ppe (personal protection equipment) since the very beginning of the pandemic. questions without an answer. i would have almost preferred to have some mistake to acknowledge, to be able to explain my disease, rather than accepting to be a victim of chance-or of an act of god. the anguish not to have time overwhelmed me. time for what? one may ask. time for a lot of things i tell you. having been raised in an overwhelming catholic country i had been advised to repent of all my sins and plead to be forgiven before facing my creator. but tottering on the ambulance gurney, deafened by the howls of the siren, heated up by fever, punished by unrelenting headache, i could not possibly remember a single sin to be forgiven of. as an oncology nurse i gained some expertise in ministering to dying patients. a successful approach invites patients to distillate from their personal histories the most meaningful moments and to prepare an essence to share with their loved ones. somehow this preparation will allow them to defeat death by coopting death in their living experience and making of it one of the most precious moments of their lives. but who had time to think of any meaningful moment in my situation? in retrospective i was surprised for not having felt angry. we have been told that anger is the first response to the diagnosis of any lethal disease such as cancer.5 but i did not have time to brew any anger. i felt like a survivor of a crash being rushed to the hospital and hoping to make it in time. anger may be a spontaneous response to a diagnose of incurable cancer, when the patient learns that he/she is going to die, but still has a few months to live, not for somebody who may have just hours to live. we stopped at a small hospital, not the major hospital where i had asked to be carried. i guess the paramedics felt it was not safe to wait that long, or maybe the major hospital was full. “oh my god, i told myself, i know now i am going to die!” as a health professional i know the outcome of care is related to the experience of the caregiver. the more the health professionals are experienced, the better are the chances to get well. fortunately, my assumptions in this case were wrong. after three hours in the er i was admitted to the patient under investigation (pui) unit where you find patients who need diagnostic tests and are too unstable to remain home. i was very pleased by the empathy shown [qualitative research in medicine & healthcare 2021; 5:9689] [page 7] medicine at the end of the world no nco mm er cia l u se on ly by the nurses and the doctors. the nurse who interviewed me on admission referred to me as mister begazo, asked whether i preferred to speak english or spanish, and before beginning to pose her protocol questions asked about my profession and my family. both doctors and nurses acknowledged my profession as nurse manager. the doctor talked to me as to a colleague and the nurses during the morning visits asked my recommendations about some problems they had encountered during the day. i remember to have read somewhere that the roman emperor adrian stated “it is difficult to remain emperor in front of a physician” that i may translate “it is hard to remain a health professional in front of a health professional.” indeed, it is hard to remain oneself in the medical world, when they ask you to dismiss your personal cloths and to wear the same gown of everybody else as if it were a uniform, when your movements are restricted like those of a prisoner in jail. i remember that one of the doctors i worked with, when he had a patient who was a minister always asked him/her to say a prayer at the end of the visit. he explained me that he wanted every patient to maintain his/her dignity during the visit, show to him/her that we were interested in a person, not just in his/her cancer. they asked every day of my family and they asked my nursing advise: they did honor my dearest assets, my family and my work. they did not miss a chance to remind me that i was a person with coronavirus, not a case of coronavirus. things kept going from bad to worse. after two days my lungs were replenished with coronavirus. my nurse activated the call for an intensive care unit consultation and in less than 20 minutes i was attached to the all possible monitors in intensive care. i felt like a fly trapped in a spiderweb. at this point sadness prevailed over fear. sadness because i might have not met my family again; sadness for being unable to kiss my wonderful wife and tell her how much i loved her one more time and to thank her one more time for her love, sadness for what i left undone and i would have not been able to accomplish, sadness for having to die before i was ready for it, sadness for dying alone. as a nurse, i witnessed hundreds of deaths. i remember rooms filled with children and grandchildren while a patriarch or a matriarch were receiving the last rites, and i relished their tears as the quintessence of ultimate consolation. in a few cases i saw disheveled patients dying alone and i had felt desolation rather than compassion. they lacked the consolation of tears. and now i was going to die like that woman whose name and age we never found out, brought into my ward with massive ascites while in hepatic coma. but my family was present, as i had become real close to the hospital personnel. they did not miss a single time to encourage me with a smile and adding :“leo you got it,” “leo keep fighting! your family is with you.” and they facilitated the contacts with my family through phone calls. they even showed me a video that my wife and children had prepared to tell me they were trusting in my recovery and they were looking forward to welcoming me home again. about my family: as i was in the icu my wife was admitted to the same hospital, few rooms away, with coronavirus. despite she was also in icu, she did not have the severity of my case. and while i was worried for her i also felt in my depth that her disease was an ultimate act of love, that she wanted to partake my suffering. as a christian i saw in her christ who had elected to partake the suffering of our wretched humanity. and here it came, the moment of the truth. it is the moment that every health professional fears because we are overwhelmed by the awesome responsibility to guide the patient into a territory that is largely unknown to us. we have to lead them to the threshold of death and we really don’t know what death is nor do we know which obstacles on the road we will have to overcome. we have to play god without the wisdom of god and sometimes even without faith in a divinity. based on the information we provide the patient will have to make heartbreaking decisions, that may turn out to be the wrong decisions. and this time i was the patient, and as a health professional i knew that the message i would have received was based on poorly known facts. i did trust completely my caregivers but unlike other patients i happened to know all the uncertainties they were dutybound to cover. early in the morning, the glass door of my icu room opened and i saw my doctor and two nurses ready to talk to me. i felt my heart stop for a second. just by the way they were looking at me i learned that bad news was coming my way. suddenly dr. y started talking: “hi leo, i am sorry but i don’t have good news for you. leo, your lungs are taken by the virus and if we don’t put you on the vent now, most likely you will die on this bed in the next twenty-four to forty-eight hours.” instead of fear my first reaction was a discomforting realization. no matter our status in life, our education, our degree or our wealth, we are vulnerable like any other person and there is nothing you can do to buy life. i had no way to try to bribe biology and science in order of acquiring a new life. after his announcement, i asked dr y to be allowed a phone call to my wife. a few rooms away and yet as unreachable as if she were on mars, my spouse mentioned that dr. y had already spoken with her and disclosed to her the severity of my illness. she had provided the consent to mechanical ventilation. i finished my conversation by telling her, “if i don’t wake up, remember that i love you and please tell our children that i love them with all my heart.” she answered “i love you too honey, and i don’t want you to die! do fight this virus with all your strength because we need you”. after i hung up the phone, i told dr. y i needed a minute to pray before engaging in the next step of my care that was going to include medical induced coma. two nurses, one on each side of my bed, held my hands supporting me in this brief visit of eternity. i prayed and told the lord that i trusted him and i trusted [page 8] [qualitative research in medicine & healthcare 2021; 5:9689] article no nco mm er cia l u se on ly my life to him. i felt at peace and i knew i was ready to accept the final outcome even if it involved death. it is just you, god on the other side of death. at that time a clinical trial with the drug tocilizumab became available and my wife eagerly consented to my participation to the trial! thanks to her insight five days later i was ready for being extubated and eight days later for discharge from the hospital. and now i am on my way to recovery and keen as ever to go back to my nursing and to share with my patients the lessons i learned at the south bay hospital of sun city. discussion and conclusions some people may make fun of me if i say that i was miraculously healed and may warn me to thank the developments of science rather than a questionable divinity that escapes our senses. no use to argue. nobody can dissuade my conviction that all human events, including clinical research, are acts of god and the ventilator, and the empathetic hospital personnel and the new drugs were gifts of god. but even the most skeptical and agnostic person cannot deny a fact. it was the care of my caregivers and my family that led me to my cure. i know that without the care of my nurses and my doctor and the love of my family i would have probably surrendered my life before getting to the ventilator, before being able to be healed with tocilizumab! science may be essential, but certainly it is not sufficient to cure a life-threatening disease. the motivation to live enables us to utilize science to save our lives. the motivation to live is reinforced by love, to know somebody for whom every effort to live becomes worthy. even during my medical induced coma, i heard voices telling me not to give up for the sake of the people who loved me. from my ordeal, i learned two important lessons that will inform my practice from now on. empathy and compassion facilitate the delivery of care and the achievement of a cure. i will not be shy in expressing my care to my patients nor will i be shy in encouraging the patient’s loved ones to express their love in every possible occasion. i will share with them how the unrelenting love of my spouse, and the demeanor of my caregivers, motivated me to live even during the darkest times of my disease. empathy and compassion also facilitate healing, and while in many case a cure may not be achievable, healing is always achievable. i understood this concept fully when i prayed with the nurses prior to medically induced coma. at that time i was not anymore fearful to die. i was at peace with myself. cure refers to the disease, healing refers to the ability of the person to come to terms with the disease even when the outcome is death. nobody can avoid death. if death is the ultimate enemy the whole humanity is doomed as all of us are going to die. the only way to defeat death is to face death as a most meaningful time of our life. for some people, including myself, religious faith represents a way to healing. as any health professional who uses every available instruments to help the patients i will not shy from praying with my patients if they ask me to do that. whether or not my prayer led to the clinical trial with tocilizumab, my prayer healed me even before i was intubated. the prayer pervaded me with trust. i am left with a challenge that may appear unsurmountable: how to inspire empathy and compassion to my staff, and i mean not only the nursing staff but everybody working in the clinics i work in partnership. because i realize that empathy and compassion represent a communal goal. clearly, you cannot teach compassion and empathy in a classroom. but kindness and even-tempered behavior may create an atmosphere favorable to the germination of compassion. after all, people who are treated with respect are more likely to show respect of other people. the main reason people fail to acknowledge another person’s dignity is because nobody might have acknowledged their own worthiness. “a single death is a tragedy; a million death is statistics” stated joseph stalin to justify his vain attempt to build a proletarian government over millions of death. sadly, this cynical assumption might have been adopted by modern medicine. coronavirus caused already more than a million deaths in the world and we have learned to live with it. health professionals may be so overwhelmed to have become unable to see the single patient. emergency rooms have become field hospitals where one needs to make the painful choice to care only for the patient most likely to survive. even before the epidemics however, overspecialization and widespread adoption of technology, including the electronic health records, have progressively eroded the relation of practitioner and patient. i am proud to say that the most important mission of the nursing profession is to keep alive this relationship, to prevent that a single death disappeared anonymously in the statistic ocean. unlike the emperor adrian i felt an emperor at south bay hospital and i plan that every patient under my care feels an emperor! references 1. castellà-creus m, delgado-hito p, casanovas-cuellar c, et al. barriers and facilitators involved in standardised care plan individualisation process in acute hospitalisation wards: a grounded theory approach. j clin nurs 2019;28:4606-20. 2. schreiner l, wolf bordonaro gp. using nontraditional curricular tools to address death and dying in nurse education. j hosp palliat nurs 2019;21:229-36 3. clark r. letting go: the role of the nurse during death and dying. j gerontol nurs 2019;45:2-3. 4. paterson c, gobel b, gosselin t, et al. oncology nursing during a pandemic: critical reflections in the context of covid-19. semin oncol nurs 2020;36:151028. 5. kübler-ross e, wessler s, avioli lv. on death and dying. jama 1972;221:174-9. [qualitative research in medicine & healthcare 2021; 5:9689] [page 9] medicine at the end of the world no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2021; 5:9686] [page 1] in the course of unexpected and overwhelming events such as the ongoing covid-19 pandemic qualitative research based on narrative inquiry may provide unique and vital insights. it identifies individual survival parcourses with universal valence. these parcourses are all but lost in traditional medical, psychological, and social research that overlooks individual experiences, classifying them as background noises. from these very noises qualitative research extracts the sound of coping mechanisms that allow a person to come to term with his or her own personal tragedy even if death appears all but unavoidable. an example of such itineraries is provided in the memoir of primo levi.1 levi faced death every minute of the two years he spent as a prisoner in auschwitz. he succeeded in dissipating his own fears and in encouraging his prison mates by rehearsing and quoting dante’s poem1 la divina commedia (the divine comedy) where ulysses reminds his shipmates that no one can rob them of their dignity. this anecdote that inspired victims of wars, persecutions, and natural disasters around the world would have been lost in the official accounts of the holocaust. the articles that follow emphasize that it is always possible to find a pathway to heal one’s illness even when scarcity of resources withstand medical management. the other fundamental role of qualitative research consists in a more complete analysis of the response to the crisis. the scope of the analysis includes individual impressions and experiences that highlight unsuspected strengths of the system as well as unknown weaknesses. some of the articles that follow highlighted the sense of solidarity and mutual responsibility among health care workers. under managers who lead by example this solidarity may become the main resource at a time when confusion prevails and individual roles are muddied. at the mean time an emergency of long duration presents new challenges that involve the burnout of the caregivers, the rationing of limited resources, the economical and emotional impact on the general population. while it may not provide a response to each dilemma, qualitative research puts a human face on each challenge and comforts the practitioner. some quandaries, such as the rationing of care, may be insoluble. in this circumstance any decision guided by compassion is the best decision. this issue of qualitative research in medicine and healthcare is dedicated to covid-19. we collected the testimony of health professionals who have been both patients and caregivers. based on their embodied experiences, the authors illustrate the healing trajectories available to victims and caregivers of the victims, not only during a pandemic but throughout catastrophes of any type. the pandemic has caught us unprepared at a medical, social, and emotional level. the western culture held outbreaks of this size all but impossible in the so-called developed world. widespread hygienic norms should be able to prevent contagion by infectious agents, and a science able to dissect the human genome may certainly find a remedy against new organisms. these expectations might be legitimate, but they need to be placed in a realistic context defined by human reactions and practical conditions. let’s start with precautional measures. social isolation proved out of reach for overcrowded residences,2 for retirement homes,3 and for most work related activities that could not be conducted from a distance. face masks and vaccines are only as good as the willingness to adopt them4 and as long as the demand does not overwhelm availability. the development of vaccines and therapies requires time, and during this time the availability of hospital beds, life-supporting devices, and health care providers5 may become overtaxed. and it is currently overtaxed in some areas of the country such as southern california. the economic duress caused by the pandemic may delay the treatment of coronavirus as well as of other diseases and may even cause food uncertainty.6 the emotional cost of covid-197 has not been fully evaluated yet, editor’s introduction: qualitative research in the course of a pandemic lodovico balducci senior member emeritus, moffitt cancer center, tampa, fl, usa correspondence: lodovico balducci, senior member emeritus, moffitt cancer center, 4128 carrollwood village dr, 33618 tampa, fl, usa. key words: covid-19; pandemics; qualitative research; ethics; solidarity, religion. conflict of interest: the author declares no conflict of interest. received for publication: 11 december 2020. accepted for publication: 29 december 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2021 licensee pagepress, italy qualitative research in medicine & healthcare 2021; 5:9686 doi:10.4081/qrmh.2021.9686 qualitative research in medicine & healthcare 2021; volume 5:9686 no nco mm er cia l u se on ly but we know it includes anxiety, depression, post-traumatic stress disorder and may lead to outbursts of domestic and community violence. naturally medical, economical, and emotional issues have influenced each other creating a multidimensional self-aggrandizing crisis. our overreliance on science to prevent a pandemic proved misguided and now scientists foresee that even worse pandemics may be on the horizon. the exploration of human reactions and individual pathways to survival and healing through narrative could not be more timely. germane to narrative based research on covid-19 are previous literary descriptions of pandemics. literature and arts have dealt with pandemics of the past and in some cases they have used pandemics as background of novels.8 it is important to ask what the present articles may add to the existing material. we will mention the works that appear more relevant to the current situation. the so called “black plague” that ravaged europe between the fourteenth and the seventeenth century represented the most quoted literary model of a pandemic and has inspired two major italian novelists, giovanni boccaccio and alessandro manzoni. the decameron (from the greek ten days) by boccaccio is a collection of a hundred short novels narrated over ten days by ten youths in the outskirts of florence, where they had fled the plague in the fourteenth century. i promessi sposi (the betrothed) is a long novel that takes place in the seventeenth century in northern italy and contains a description of the 17th century plague in milan, italy. one is surprised of finding many similarities between events occurring centuries ago and the current epidemic of covid-19. in both reports the initial signs of the contagion had been disregarded and so were the precautionary measures (the face mask of our time) and the impact of the epidemic had been underestimated. in both cases the plague brought social havoc and economic disruption. in both cases people unable to find a solution on their own recurred to god. but in manzoni’s account the religious ceremonies led to increased spreading of the plague (does it sound familiar?). manzoni also describes the procession of carts carrying the dead to common tombs, (something we saw today in italy and in brazil and something comparable to the makeshift morgues of new york) and the conspiracy theories that led to the death on the pyre of innocent individuals (the so called untori, ‘greasers’) accused to spread the contagion by greasing the pews of churches and the doors of buildings with infectious material. manzoni’s account includes several vignettes, of which the most heart wrenching is the description of a mother consigning to the monatto (undertaker) the corps of her 7-years-old daughter cecilia, dressed in her feast dress and perfectly combed. the mother bribed the monatto to take particular care of her precious child, that she greeted with arrivederci (to see you soon). though they may be literary masterpieces none of these vignettes describe personal trajectories toward coping with the plague. the accounts of boccaccio and manzoni describe the medical and social landscape in terms that appear relevant to the covid-19 pandemic but do not include the personal attitudes that are the object of the present issue of the journal. the algerian nobel prize winner albert camus wrote la pest (the plague) in 1947. in this novel the author imagines that an epidemics of plague causes the cloture of oran, a middle sized algerian town. the characters of the story are multifaceted and realistic, but the main focus of the author is to express his philosophy through them. camus was an atheist existentialist, longing for a religious faith. he regretted of being unable to believe in god. in the novel the character of mr. tarrou reflects the personality of camus himself. mr. tarrou is an atheist who aspires to become a saint even in the absence of a deity. to this end he succeeds in inspiring a sense of solidarity in the population of oran. a common goal allows the populace to overcome the desperation brought on by the epidemics and to discover a sense of personal closeness. it also leads to the mobilization of unsuspected social resources for the management of the plague. as we will see this experience is germane to the experience of health professionals caring for covid-19 patients. a relatively small number of american novels have the spanish influenza as background. of these may be worth mentioning john o’hara: the doctor’s son (1936). the author was indeed the son of a physician who took care of influenza patients during the pandemic in a small mining town. he highlights that the more likely victims of the pandemic were the underprivileged living in poverty, a finding germane to the current pandemic. the author did not have the opportunity to appreciate the relation of advanced age and mortality, because at that time the general population was much younger and the percentage of individuals over 60 was minuscule. perhaps the document more relevant to our issue of the journal is american life stories: manuscripts from the federal writers project 1936-1940 that contains 2847 stories related to the great depression. many of them report personal accounts of the flu epidemics. the narratives were collected by a number of writers and were organized by john a. lomax, benjamin a. botkin and morton royce, and may be accessed online. the account of nurse alice duffield from arkansas, narrated by lisa taylor with the title a woman on duty, is particularly compelling. it talks of corpses spilling out of overcrowded morgues. it talks about black and white workers walking together in then segregated arkansas. and she describes how her nurse manager scolded her for crying in private. given the emergencies there was no time to waste in the expression of private distress. this collection of snapshots of the spanish influenza epidemic may indeed be an invaluable mine of information for qualitative students and may to some extent complement our findings. yet i believe our contribution to the [page 2] [qualitative research in medicine & healthcare 2021; 5:9686] editorial no nco mm er cia l u se on ly literature is unique in two respects. it represents an account of recent experiences rather than of decade old memories. it follows the established rule of narrative based qualitative research. two of the articles report the experience of health professionals who caught the disease themselves. leo begazo9 is a nurse manager in a major usa cancer center. he disregarded the initial symptoms of covid-19 as if they represented a common viral infection and only when he had developed significant respiratory distress sought admission to the hospital that led to mechanical ventilation, requiring medically-induced coma. most likely his disease was cured by the experimental drug tocilizumab that leo received as part of a clinical trial. he learned three major lessons that will inspire his practice from now on. he experienced healing when two nurses agreed to pray with him prior to intubation. he realized that even if he had not survived he was at peace with himself and death did not scare him anymore. in other words he learned that healing is a personal experience and is always achievable even in the absence of a cure. from now on healing will be the ultimate goal of the care he is going to provide to cancer patients. he realized that the love of his family and friends who insisted that he fight the disease to the end has been the key to his cure. without this support he probably would have forfeited mechanical ventilation when his situation deteriorated and without ventilation he would have not been able to live long enough to receive the drug that saved his life. he wishes to emphasize how important it was in this respect the attitude of the hospital staff. they treated him with respect, acknowledged him as a colleague, and obliged his request to pray with him. they facilitated the interaction with his family via video, and they surrounded him with affection as well. in his own words they “treated him as a person with covid-19 and not as a case of covid-19.” from now on he will make sure that each patient finds the most favourable conditions to a good outcome. he will treat all patients with the same respect he received, will not shy away from praying with them and will encourage family and friends to express their affection in the most convincing way. as an oncology nurse he knew a lot about death. yet he was surprised that his reaction toward the threat of death was fear rather than anger, as he had expected. he realized that the reaction to death may vary with the situation. a cancer patient who learns to have a limited time to live but his/her death is not imminent has the time to go through all the stages of death described by kubler ross.10 the situation is quite different for a person facing imminent and unexpected death.11 in this situation a number of different feelings compete with each other, including fear of death, apprehension for the survivors, worry for unfinished tasks, sorrow for missing a promising future. and of course death may come unexpected also to cancer patients due to an intercurrent disease or accident or to treatment complications. in these situations the most appropriate action of the provider may include listening, allowing the patient to unravel the different emotions and addressing the prominent ones. stefano leccardi12 is a specialist in pulmonary diseases who currently works as a hospitalist in a general hospital in northern italy. he lived the epidemic as a provider and as a patient: after taking care day and night of covid-19 patients he caught the infection himself and like begazo he had been threatened by imminent risk of death from respiratory failure. the outburst of the epidemic led to an unexpected and most welcome outpouring of human solidarity among the hospital staff that inspired each person to work to the best of his/her ability, out of a sense of service. one may say that the epidemic allowed them to discover the satisfaction and the pride to care for other human beings. when asked to be part of the covid management team stefano had no second thought, despite the risks and the inconvenience involved. he realized to be endowed with unique expertise to manage these patients and lived his service as a privilege. the time had come for him to pay back a world that had been most gracious and welcoming to him. perhaps lucia, the nurse manager of his ward had the most important influence in promoting solidarity. together with her spouse and her children she decided to table the beloved family outings and instead to make a family project of the management of covid. without extra compensation lucia was working fourteen daily hours every day of the week, always with a smile. she did not ask the staff to provide extra work, but her example elicited what leccardi calls “a joyful competition” among the staff members to provide extra service. and perhaps to talk about solidarity is limitative in scope. when the mother of a physician died all her colleagues offered to cover her work shifts. when she came back to work, she stated she felt surrounded by love. it may be impossible to define love in words, but it is something one recognizes when he/she sees it. when the ward became overwhelmed the health department mandated that the icu be reserved for individuals younger than 75. it was a legitimate decision that contrasted however with the principle of justice, one of the four pillars of medical ethics. leccardi does not try to afford this vexing dilemma. instead, he acknowledges that the practice of medicine in the presence of an emergency may involve insoluble predicaments. it would have been inappropriate for a provider to decide on his/her own to prioritize which life to save. but a society has the right to manage limited resources and providers may obey governmental directions, without compromising their ethical principles. like begazo, leccardi faced imminent death. like it was the case with begazo, the threat of death allowed him to widen his scope of healing, to learn that healing is an always reachable personal settlement even when cure is [qualitative research in medicine & healthcare 2021; 5:9686] [page 3] medicine at the end of the world no nco mm er cia l u se on ly out of reach.13 perhaps inspired by the psychiatrists in his family (his mother and his late brother) he introduced the concept of the wounded healer14 originally formulated by carl jung. leccardi felt that his flirtation with death gave to him a special credibility to bring healing to incurable patients. finally, like begazo, leccardi credited his recovery as much to the love and care he was surrounded with as he does to his medical treatment. the article by hernandez et al.15 illustrates an ethical dilemma that might have been unknown during previous pandemics. an ethical consult was requested concerning a 42-year-old woman who had developed covid-19 after a bone marrow transplant for the management of acute leukemia. it is important to highlight that the patient belonged to an ethnic minority, that appeared more susceptible to the infection. at the meantime minority individuals are more likely to suspect that providers may shortchange them of their best care. indeed, the patient had refused in multiple occasions to provide advanced directives about her health care. on admission she was unable to express her wishes because of encephalopathy and her husband was by default her health care surrogate. since her admission, the situation appeared hopeless, because she had bilateral pneumonia and was neutropenic as a result of her recent transplant. nonetheless, she received all available treatment including tocilizumab, remdesivir, convalescent plasm and steroids. the situation became more complicated because of a pneumopericardium that would have required a surgically placed drainage, but the procedure was judged too risky, and the development of disseminated herpes infection. the spouse and the father were originally reluctant to discontinue life supporting care. rather than making the decision to discontinue all treatments because of futility, as it would have been his prerogative, the ethic consultant recommended a family reunion involving the children and the parents of the patient. during that reunion it was explained to the family that the life supporting treatment was prolonging the patient’s death and the family unanimously agreed that the most compassionate course of action included trusting the patient to comfort care. this case is emblematic of our times for medical and cultural reasons. this lady had received organ transplantation, a procedure that might have cured her leukemia, but had made her more susceptible to infections. organ transplantation is becoming every day more common and so is the number of vulnerable patients. but even without bone marrow transplantation modern medicine has allowed the survival of more and more individuals likely to succumb during an epidemic. many cancer patients are among them. this lady belonged to an ethnic minority that had been underserved by medicine and she and her family were afraid of being shortchanged as it had happened in the past and may still happen. this situation is also likely to become more and more common given the increased diversity of the world population. of particular concern is the large number of undocumented immigrants that may delay the quest of treatment out of fear of being incriminated. in the course of an epidemic they may become a reservoir of infection. the ethical team was culturally sensitive and led to the solution of this case through compassion. this case emphasizes the importance of cultural competence in the management of a pandemic, especially since the minority population is the most vulnerable. all articles deal with religious beliefs that may also lead to healing. organized religion may provide social resources in addition to the personal ones and it behooves the practitioner to discover these resources that may include economical and emotional support, childcare and help in the instrumental activities of daily living. in a pandemic these resources appear particularly relevant. nobody would advocate exploiting the pandemic in order of influencing people’s beliefs. nobody nowadays would support the situation described by the italian director vittorio de sica in the movie umberto d where an old retiree agreed to recite the rosary daily to gain the benevolence of the nurse manager, who was a nun. we are talking about unearthing all existing resources to make most effective the treatment of the seriously ill. what we have learned from these reports? two health care providers discovered the full scope of healing and plan to make of healing the main focus of their practices. this lesson is far from new, but it is worth repeating, because healing is a personal experience reached through a personal parcourse and each parcourse is new to some extent. for begazo prayers led to healing, for leccardi the discover of healing coincided with the discovery of the ultimate sense of human life. both of them emphasize the importance of personal care, of the respect of human dignity, and of spirituality for the achievement of healing. both conclude that it is necessary to learn to coopt death as a human experience to be able to heal. if death is the ultimate enemy the whole humanity is doomed to failure. by way of his personal experience leccardi confirms the literary hypothesis of mr. tarrou in camus’ the plague that a major event like a pandemic may reveal unsuspected reserves of human solidarity as well as of professional energy. to unearth these reserves, leaders need to lead by role modeling rather than commanding. leccardi goes a step farther and recognizes that role modeling is made possible by unconditional love, that is, love that looks for no other remuneration but service itself. this consideration expresses a challenge to a culture that considers personal profit the primary motivation of any human action and the satisfaction of personal feelings the only worthwhile goal. a common tragedy reminds us “not to ask for whom the bell tolls. it tolls for thee.” during the pandemic we learned that if we can’t live together we will have to die together. the pandemic elicited a number of ethical questions, [page 4] [qualitative research in medicine & healthcare 2021; 5:9686] editorial no nco mm er cia l u se on ly such as rationing of care and provision of futile treatment. the answer to these questions needs to be based on ethical principles but adapted to the practical circumstances. rationing of care as a provider’s choice is unacceptable, but at the same time it behooves the practitioner to heed the directions expressed by governmental agencies that represent the will of society. the provision of futile care is wrong, but the discontinuance of any care needs to be planned through a compassionate decision involving the patient’s family. all the articles emphasized the role of religion as a personal and social resource. while we certainly honor these testimonies, i believe they should be generalized by saying that healing is a spiritual experience and a practitioner should learn how to utilize the existing spiritual resources of which the cpt trained hospital chaplains are the most reliable. without affording all the issues related to the management of coronavirus i hope that this issue of the journal will become an incentive for other professionals to share their experience and creating individual trajectories to healing in the course of a pandemic. references 1. levi, p. se questo è un uomo. torino, italy: einaudi; 1955. 2. abuelgasim e, saw lj, shirke m, et al. covid-19: unique public health issues facing black, asian and minority ethnic communities. curr probl cardiol 2020;45:100621. 3. abbasi j. social isolation-the other covid-19 threat in nursing homes. jama 2020. online ahead of print. doi: 10.1001/jama.2020.13484. 4. cheng vc, wong sc, chuang vw, et al. the role of community-wide wearing of face mask for control of coronavirus disease 2019 (covid-19) epidemic due to sars-cov-2. j infect 2020;81:107-14. 5. firew t, sano ed, lee jw, et al. protecting the front line: a cross-sectional survey analysis of the occupational factors contributing to healthcare workers' infection and psychological distress during the covid-19 pandemic in the usa. bmj open 2020;10:e042752. 6. okonkwo ne, aguwa ut, jang m, et al. covid-19 and the us response: accelerating health inequities. bmj evid based med 2020. online ahead of print. doi: 10.1136/bmjebm-2020-111426. 7. torales j, o'higgins m, castaldelli-maia jm, ventriglio a. the outbreak of covid-19 coronavirus and its impact on global mental health. int j soc psychiatry 2020;66:317-20. 8. keys te. the plague in literature. bull am library ass 1943;32:35-56. 9. begazo l. from nurse to patient: a journey to healing. qual res med helathcare 2021;5:9689. 10. kübler-ross e. on death and dying. bull am coll surg 1975;60:12:15-7. 11. heymann ep, wicky a, carron pn, exadaktylos ak. death in the emergency department: a retrospective analysis of mortality in a swiss university hospital. emerg med int 2019;2019:5263521. 12. leccardi s. covid-19: a learning moment for patients and health professionals. qual res med helathcare 2021;5:9688. 13. byock ir. the nature of suffering and the nature of opportunity at the end of life. clin geriatr med 1996;12:237-52. 14. gonzales m, melton l. the wounded healer. j adv pract oncol 2017;8:453-5. 15. hernandez j, lubrano diciccone b, thirlwell s, boothjones m, et al. covid-19 pandemic causing medical and public health ethical dilemmas: a case report and review of literature. qual res med helathcare 2021;5:9690. [qualitative research in medicine & healthcare 2021; 5:9686] [page 5] medicine at the end of the world no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2018; 2:7387] [page 113] introduction breast cancer is the most common type of cancer and a leading cause of death among women in the u.s.1 breast cancer diagnoses vary widely and patients diagnosed with breast cancer require treatment regimens personalized for individual needs.2 as such, women diagnosed with breast cancer have a need for both quality cancer-related information3 and social support.4-8 healthcare professionals, such as physicians and nurses, often are a primary source of cancer-related information3 and social support6 for women diagnosed with breast cancer. research has long indicated that people diagnosed with cancer have increased support needs9 and that healthcare providers often help to meet these support needs.6,8,9 studies examining the support provided by healthcare professionals have focused on the source of the support (e.g., physician, nurse), the function of the support provided (e.g., informational, emotional), and the health outcomes related to patients’ use of support.6 cancer is a complex diagnosis and, as such, people diagnosed with cancer receive complex information and experience a greater number of interactions with healthcare providers.3 many research studies have cast cancer-related information provided to patients by providers as a type of social support.4,5,8 however, limited research has investigated how the manner used to provide cancer-related information leads to patients feeling supported rather than overwhelmed and unsatisfied.6 that is, much of the research on the informational support provided to those diagnosed with cancer classifies the cancer-related information delivered to patients by healthcare providers as supportive, but does not distinguish whether patients feel the information they received has met their needs as opposed to actually considering it delivered in a supportive manner. research suggests that healthcare providers do not always provide adequate amounts of cancer-related information to patients and patients may be left with unmet needs.10 further, when patients’ information needs are not fully met, they may have worsened health outcomes as a result.3 however, patients report more satisfaction with their medical encounter and experience various health benefits when they receive informational support.6,11 thus, understanding the characteristics of information delivery patients report as supportive may assist researchers in ensuring that patient information needs are met. the present study examines the ways in which above and beyond: an exploratory study of breast cancer patient accounts of healthcare provider information-giving practices and informational support andrea l. meluch department of communication studies, indiana university south bend, south bend, indiana, usa abstract this qualitative study examines breast cancer patients’ accounts of the characteristics of healthcare providers’ supportive information-giving practices. twenty-two women diagnosed with breast cancer participated in semi-structured in-depth interviews designed to understand their experiences receiving supportive information from healthcare providers (e.g., oncologists, surgeons, nurse practitioners). participants’ accounts suggest that providers who spend extensive time discussing cancer-related information and who explain that information thoroughly so that patients can understand their medical situation, are communicating informational support in contrast to merely presenting factual information related to cancer diagnosis and treatments. participant accounts further suggest that the supportive nature of provider information-giving practices results from message framing, or the provider’s metacommunication. correspondence: andrea l. meluch, department of communication studies, indiana university south bend, 1700 mishawaka avenue, south bend, indiana 46615, usa. tel.: 574.520.5232. e-mail: ameluch@iusb.edu key words: informational support; breast cancer; information-giving; healthcare; metacommunication. conflict of interest: the author declares no potential conflict of interest. funding: none. received for publication: 28 february 2018. revision received: 21 july 2018. accepted for publication: 21 july 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright a.l. meluch, 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:113-120 doi:10.4081/qrmh.2018.7387 qualitative research in medicine & healthcare 2018; volume 2:113-120 no nco mm er cia l u se on ly healthcare professionals convey information in a supportive manner to breast cancer patients. social support social support is a communicative process that results in the construction of social networks.12 albrecht and adelman13 defined social support as verbal and nonverbal communication between recipients and providers that helps reduce uncertainty about the situation, the self, the other or the relationship and functions to enhance a perception of personal control in one’s life experience. albrecht and adelman’s definition argued that social support reducesuncertainty, or the ambiguity, that one experiences when one does not have complete information.14 for example, one encounters many unknowns when diagnosed with breast cancer (e.g., duration of illness, outcome of illness) and these unknowns can create feelings of uncertainty about numerous aspects of the situation. albrecht and adelman13 explained that uncertainty in health crises leads to stress. they contended that when social support reduces uncertainty, social support also reduces stress. thus, albrecht and adelman initially argued that social support benefited health by reducing stress. albrecht and goldsmith12 later revised their13 definition of social support to argue that social support helps individuals manage, instead of reduce, uncertainty. for example, people diagnosed with cancer can manage uncertainty related to treatment decisions when they receive informational support, thereby, improving their decision making and problem solving.6,15albrecht and goldsmith12 also recognized that uncertainty is not necessarily a negative experience. although an individual often experiences uncertainty negatively (e.g., concerns over one’s ability to pay medical expenses or one’s ability to manage side effects of chemotherapy treatment), uncertainty also can be a positive experience if it allows an individual to feel hopeful or optimistic. for example, people diagnosed with advanced cancer often want their healthcare providers to communicate some level of ambiguity about the future so that they can retain a sense of hope and even optimism regarding length and quality of life.16 thus, social support helps individuals better manage the uncertainty accompanying their cancer diagnosis and experience reduced stress as a result. the functions served by social support have interested researchers for several decades.12 early on, cobb17 explained that social support can provide resources (e.g., information, material aid, encouragement) that help individuals moderate their stress. researchers later developed typologies of the functions that social support serves.18,19 today, researchers often focus on three functions of social support (informational, emotional, instrumental).20 researchers interested in the social support people diagnosed with cancer receive from their healthcare providers commonly examine the informational function of social support.6 informational support information, explanations, guidance, and advice can be understood as informational support.20 sources of informational support for people diagnosed with cancer include family and friends,4 peers patients interact with through digital forums,21 and healthcare providers.4,6 cancer patients often indicate an increased desire to receive informational support from their healthcare providers.5,6,8 most patients receive substantial information from their healthcare providers and providing information in itself is a responsibility associated with healthcare providers’ jobs or organizational roles.3,22 that is, healthcare providers have the responsibility to provide patients with the information they need to make informed decisions about their treatment.3,15,22 for patients, informational support can be a critical resource in helping one manage uncertainty, feel a greater sense of control over the situation, and experience health benefits.5,6,11 mills and sullivan11 reviewed literature regarding relationships between informational support offered by nurses to people diagnosed with cancer and those patients’ health outcomes. they found associations between the informational support provided by nurses and reduced anxiety, enhanced sense of personal control, greater compliance with suggested medical regimens, and feelings of greater security. however, cancer patients do not always see information-giving processes as helpful because the amount or complexity of information can be overwhelming and contribute to greater stress and uncertainty.16,23 thus, receiving information from a healthcare provider in of itself is not necessarily a supportive experience leading to health benefits. numerous research studies have indicated that people diagnosed with cancer classify the information that they receive from their healthcare providers as informational support.4,5,8,15 for example, nazione et al.5 examined the verbal informational support surgeons provide to breast cancer patients. they operationalized informational support as any suggestion or advice...evaluation of the problem...[and] form of teaching the patient about the problem in an effort to problem solve.5 nazione et al.’s operationalization of social support focuses on the content of the message, or verbal communication of information, and the outcomes of that information (i.e., making decisions about treatment). however, this operationalization of information-giving does not fully explain what it is about the way providers present information to patients that indicates the supportive nature of the communication (i.e., helping them manage uncertainty) in contrast to it being overwhelming, confusing, and/or unhelpful. given that the majority of researchers have focused mainly on the informational content provided to patients (e.g., as advice, as a description intended to teach the patient) instead of whether other characteristics of provider information-giving (e.g., amount of information given) are indicative of supportive communication, the present exploratory study [page 114] [qualitative research in medicine & healthcare 2018; 2:7387] article no nco mm er cia l u se on ly seeks to fill this gap. thus, the following research question guides this study: what are the characteristics of healthcare provider information-giving processes that breast cancer patients report as indicating support? materials and methods the data used in this study are a subset of a larger existing dataset gathered to investigate cancer patient experiences of social support in healthcare settings. i conducted semi-structured in-depth interviews with individuals diagnosed with various types of cancer and focused on the interviews with women diagnosed with breast cancer in the present analysis. participant demographics participants’ ages ranged from 34-82 years-old (m=59.59, sd=10.73). twenty participants self-identified as white and two participants self-identified as white and native american. participants were at different stages in their breast cancer treatment. the majority of participants (14) were married, four participants were divorced, two participants were widowed, and two participants had never been married. three participants did not have children, four participants had one child, ten participants had two children, three participants had three children, one participant had four children, and one participant had six children. five participants had obtained a high school diploma or ged, three participants had attended some college, six participants had obtained an associate’s degree, five participants had obtained a bachelor’s degree, and three participants had earned a graduate degree. recruitment and data collection procedures i recruited participants at a cancer wellness center located in a medium-sized midwestern city. before the interviews took place, i conducted an informed consent process with all interviewees. the university institutional review board approved the interview protocol used. i audio-recorded all interviews. i conducted in-depth interviews with all study participants. in-depth interviews are the use of interviewing techniques to gather information and knowledge – usually deeper information and knowledge than is sought in surveys, informal interviewing, and focus groups.24 using charmaz’s25 intensive interviewing process, i engaged in a one-sided conversation in which participants shared with me their personal experiences. intensive interviews focus on a particular topic of which the participant has first-hand experience.25 for example, in the present study participants shared their first-hand experiences interacting with healthcare providers throughout their breast cancer treatment. to assist in focusing the conversation on the topic of interest in the present study, i followed an interview protocol that focused on patients’ experiences of support and nonsupport in their personal network (e.g., family friends), at a cancer wellness center, and with healthcare providers. specifically, the interview protocol included questions asking participants about: i) instances of support and nonsupport from family, friends, and colleagues; ii) experiences interacting with other people diagnosed with cancer and participating in activities at the cancer wellness center; iii) their healthcare experiences related to cancer; iv) the extent to which participants felt supported by healthcare providers (e.g., physicians, nurses) and specific instances or examples of support (or nonsupport) during their cancer care; and vi) their accounts of the role of healthcare organizations and healthcare providers in society. interviews ranged in length from 40 minutes to 118 minutes (m=60.86 minutes; sd=15.79). transcripts were encrypted and sent to rev.com for transcription. after i received completed transcripts i de-identified them and assigned pseudonyms to each participant. pseudonyms are used throughout the findings to refer to participants. data analysis i implemented a constructivist grounded theory approach in the analysis of transcripts. constructivist grounded theory is an interpretive, systematic, and flexible method of qualitative analysis using comparative methods.25 a constructivist grounded theory approach to data analysis acknowledges the socially constructed nature of reality and the researchers’ construction and interpretation of the qualitative data.25 specifically, this approach acknowledges the researcher’s role in creating the context in which the research is conducted and the process through which it is interpreted. as such, the findings of this qualitative approach are subject to my interpretations of the dataset. two independent coders (myself and a research assistant) engaged in the initial coding of the transcripts. the research assistant only participated in the initial coding phase for the present study. two independent coders engaged in initial coding to enhance the trustworthiness of the findings. initial coding is the process of selecting data related to the study focus and assigning provisional, comparative, and descriptive codes grounded in the data.25 i used line-by-line coding during this process. line-by-line coding is the process of identifying and describing incidents in the data and then comparing the descriptions of the coded incidents to new datums.26 short, descriptive codes were assigned to each line of data analyzed. examples of line-by-line codes used include the line “[the physician] went over everything step by step” was coded as “in-depth explanation from physician” and the line “[the physician] was explaining to me what the difference was and why, what the clinical studies were, and why they pushed this to be done” was coded by as “medical explanation for treatment.” i then engaged in charmaz’s25 process of focused cod [qualitative research in medicine & healthcare 2018; 2:7387] [page 115] article no nco mm er cia l u se on ly ing. focused coding is the process of categorizing the most significant and repetitive initial codes.25 i analyzed sets of similar initial codes and then assigned them to a focused code or category. examples of focused codes used include “in-depth discussions with physicians,” “complete patient understanding of the information,” “increased time explaining information,” and “information presented supportively.” finally, i engaged in theoretical sampling to determine the properties of each category identified in the focused coding process and the connections among them.25 charmaz25 defines theoretical sampling as the process of refining and elaborating on the categories identified to construct the key findings of the analysis. i identified two key themes related to the nature of informational support provided by healthcare providers through the theoretical sampling process. identification and examination of these themes and their intersections are in the study findings section. results the research question guiding this study asks what are the characteristics of healthcare provider information-giving processes that breast cancer patients report as indicating support. the analysis of data reveal two related characteristics of provider information-giving processes that participants report as supportive: i) extensive time spent providing cancer-related information, and ii) careful explanation of complex-cancer related information. i also examine the intersections between these related characteristics of informational support. extensive time spent providing cancer-related information the first characteristic of participants’ interactions with providers that they report as being supportive in nature is healthcare providers spending extensive time discussing cancer-related information. prior research indicates that the duration of an office visit varies widely among cancer patients and physician reimbursement practices may also affect duration of offices visits.27although it is unclear whether the time providers spend with patients diagnosed with cancer is associated with better health outcomes, interviewees did say that when their physician or other healthcare provider spent extensive time with them they received an increased amount of cancer-related information, that their providers were acting in supportive ways, and that they were better able to make treatment decisions. thus, a clear commonality among participants’ accounts of labeling healthcare providers’ information-giving processes as supportive (in contrast to non-supportive) relates to the extensive amount of time those providers spent discussing cancer-related information with the participants. participants repeatedly reported that providers’ extensive time spent delivering information signifies supportive communication. for example, dolores (76, stage 1 breast) said: i really like nurse practitioners [because they] really have more time and give you a lot more information. i know they are listening to me and understanding what i’m saying too because sometimes you can talk but you can tell [healthcare providers are] not understanding. dolores also said that her doctor was “wonderful” because “he will sit and talk to me and ask me if i have any problems too.” dolores’ account emphasizes that when healthcare providers are not rushed she can completely share her concerns, ensure that her concerns are understood, and receive complete informational responses. other participants similarly noted that when providers spend extensive time providing information they feel cared for and comfortable with their treatment. julia (50, stage 2 breast) explained that her cancer-care team “spends as much time as i need them to be there.” likewise, elaine (58, stage 3 breast) reported that her physician answered all of her questions and “spent that time with me.” ramona (56, stage 1 breast) said that the “length of time” her surgeon spent with her going over cancer-related information was “shocking” because she was accustomed to her other physicians (e.g., general practitioners, gynecologists) rushing through the appointment and not receiving enough information. one exception to this pattern is lily (49, stage 1 breast) who said that “at first” her oncologist was “pretty good” when “explaining” her cancer treatment plan. however, later when she went to her appointments the doctor seemed “rushed” and she “did not always get all the information” she needed or wanted. lily noticed that she was more nervous about her condition after these short interactions and did not feel that her physician spent the time needed to “explain this to me in a way that i could understand.” lily wanted her providers to “sit down and chat with me for an hour,” but felt that either the providers were unable to (because of the number of patients they see) or did not want to spend that kind of time with her. when her providers rushed, lily saw them as less committed to her as a patient making her feel like she was “a cog” in the “corporate medical giant machine.” thus, when healthcare providers do not spend sufficient time imparting complex cancer-related information, patients accounted for the interaction as lacking support, and a mere function of the provider’s job. interviewee accounts showed an understanding that providers have significant time constraints and, thus, found the extra time spent with them be unexpected and indicative of support rather than simply as professionals doing their jobs well. sloan and knowles’8 findings similarly indicate cancer patients perceive healthcare professionals as more caring when they spend time at length (or repeatedly) providing information to them. in addition, [page 116] [qualitative research in medicine & healthcare 2018; 2:7387] article no nco mm er cia l u se on ly sloan and knowles8 also found that when healthcare providers rush through information with patients, patients will feel less satisfied with their interactions and likely not supported. careful explanation of complex cancer-related information the second characteristic of participants’ interactions with providers that they report as being supportive in nature is healthcare providers explaining information carefully in order to ensure that patients understand complex cancer-related information (e.g., diagnosis, side effects, treatment plans). participants believe that their providers carefully explain cancer-related information because providers want to ensure that they (as patients) are able to understand complex information related to cancer. for example, carrie (34, stage 4 breast) said that her cancer care team was very “caring” and “would explain things and continue on until i understood.” tara (58, stage 1 breast) reported that her oncologist “comes in and she’s talked to me through everything.” tara continued on to say that because of her oncologist’s careful explanations she “felt better going into [treatment].” stephanie (67, stage 3 breast) said, “when they were giving me chemo...[the physician provided a] very good justification, medically...to give me that drug.” as such, this explanation helped stephanie to better understand the reasoning for her treatment. nora (72, stage 1 breast) said that her doctor was “very good about explaining the radiation, the machines and all of that” so that she “understood” her treatment fully. nora also noted that she “threw a fit” when tests showed that her “margins were not clear” after her first surgery, but that her doctor showed “great concern” when explaining why she needed additional treatments and it helped nora to “put things in perspective” and move forward with the treatment. sandra (55, stage 1 breast) reported: [my oncologist] went out of the way to make sure i understood what she was talking about... she was explaining to me what the difference was and why, what the clinical studies were, and why they pushed this to be done. sandra further explained that she was “grateful” to her physician for carefully explaining the rationale for her treatment “because i had a lot of concerns” and “wanted to know the benefits” before making a decision on the type of treatment to choose. she felt that her physician went “above and beyond” her job responsibilities and, as a result, sandra felt very supported by her physician. similarly, lindsay (56, stage 3 breast) reported that her surgeon was caring because of the depth with which he presented the information to her. she said, “my surgeon...brought me in the office and he had a booklet [on cancer] there. he went over everything step by step. explained everything about it. what my type [of cancer] was and all this stuff.” other participants similarly reported that their healthcare providers were supportive, in contrast to delivering facts about cancer as simply part of their work in instances where providers made sure that patients had fully understood what they said. for example, tamra (50, stage 4 breast) attributed her healthcare providers’ actions as motivated by a desire for her to understand the information presented when she said they “make sure i’m understanding everything like my medicines, or if i need anything explained to me or if i need help with getting something medical-wise or anything, they help me with that.” tamra characterized them as “such a supportive team” because they consistently ensured that they met her healthcare needs (informational and otherwise). ginny’s (62, stage 1 breast) experience of her oncologist explaining in-depth cancer information thoroughly is particularly unique. ginny experienced reduced sexual desire as a side effect of her cancer treatment, which caused frustration for her and her partner. ginny reported strong support from her oncologist when they met to discuss this side effect. she said, “[the physician] would have him come in [to the office] because she wanted him to understand what was going to be happening to me.” an exception to providers thoroughly explaining complex cancer-related information to meet participants’ needs included julia’s first conversation with her surgeon. julia (50, stage 2 breast) reported that her surgeon called her while she was at work and told her that she had “cancerous tissue [that was] probably nothing.” julia said that the information was “overwhelming” and that she did not believe that the surgeon had fully explained what her medical situation was and what her options were. in addition, julia felt the communication of cancer-related information over the phone in contrast to being in person further diminished her ability to fully understand her medical situation. julia’s experience highlights the need for differentiating between information-giving and offering information as supportive communication. that is, the manner providers communicate information may not in fact be supportive, thus increasing uncertainty. participants attested that when providers thoroughly explained complex cancer-related information they felt more comfortable making difficult decisions related to their treatment and felt that their providers showed concern for their wellbeing. this second characteristic of supportive information-giving processes relates to the first characteristic (i.e., spending extensive time) identified. specifically, participants’ reports suggest that they are acutely aware of the complicated nature of cancer diagnoses and treatment and have a need for their providers to fully address their concerns (through spending the appropriate amount of time and thoroughly explaining the information) in order to feel comfortable. as such, when providers helped participants to feel at ease with their treatment plans, they more effectively managed the uncertainty related to their diagnosis. [qualitative research in medicine & healthcare 2018; 2:7387] [page 117] article no nco mm er cia l u se on ly metacommunication characterizing provider informational support participants characterized some of the informationgiving dynamics they experienced with healthcare providers (e.g., nurses, physicians) as not only meeting their needs, but as doing so in a manner that also communicated concern and, thereby, went above and beyond what they expected or associated with the healthcare providers’ formal responsibilities and were interpreted as supportive. participants consistently point to the manner (e.g., spending extensive time, explaining information completely, demonstrating concern for patients’ informational needs) in which their healthcare providers carried out information-giving when characterizing the messages as being supportive. the intersections between these two characteristics of provider information-giving processes stem from the framing of the content of the message instead of from the explicit content itself (i.e., the information related to the cancer diagnosis or treatment). thus, it is the metacommunication, or manner in which providers present messages, rather than the content of the messages (i.e., the informational content), that participants interpret as support instead of simply fulfilling job-related information-giving responsibilities. wilmot defines metacommunication as anything that ‘contextualizes’ or ‘frames’ messages to assist the participants in understanding the communication event.28 one could easily argue that providing information in medicine is simply doing one’s job and nothing more. however, the study findings suggest that participants draw nuanced distinctions regarding what they expect as part of a provider’s information-giving responsibilities in contrast to the presentation of informational messages that demonstrate support for the patient. notably, participants indicate that not all provider information-giving processes are supportive in nature. specifically, participant accounts show that providers who rush through information or provide information without sufficient detail are not supportive. as such, these findings suggest that it is the presentation of cancer-related information, or the metacommunication, that informs whether messages are supportive or non-supportive. discussion although providing information is arguably a job responsibility for healthcare providers (i.e., providers routinely give health-related information to patients), while providing social support is not, patients in the present exploratory study, and in other studies examining social support and provider-patient communication,4-6,15 often characterize providers’ information-giving as supportive. however, unlike much of the literature on the informational support provided by healthcare practitioners, the present study differentiates between instances of informational support and information-giving. that is, participants in the present study only classified information as supportive when the provider framed the information in a caring manner. participants’ accounts suggest that much of the time healthcare providers frame informational messages in ways that indicate that they care about meeting patients’ informational needs. for example, participants interpret providers spending extensive time discussing complex cancer-related information with them (instead of feeling rushed) as implicitly conveying care and consideration of their concerns. thus, patients report that the pace at which the healthcare providers engage in information-giving conveys support. participants also interpret healthcare providers going out of their way (instead of using medical jargon) to explain cancer-related information in a way that is clear and understandable as demonstrating that the provider cares about their wellbeing (e.g., explaining why a particular medication is used, offering ways to manage painful side effects). the present study emphasizes that metacommunication plays a particularly important role in patients’ ability to manage uncertainty related to their diagnosis and treatment. in these specific ways, providers implicitly convey informational content in ways patients deem supportive. robinson and tian6 assert that the nature of the relationship between provider and recipient provides the context in which the socially supportive communication occurs and, to some degree, the way the social support will be perceived by the recipient. thus, when providers interact with patients in ways that communicate concern for the patients’ informational needs, patients may believe that they have a more personalized and supportive relationship with the provider instead of a merely formal relationship. conclusions study limitations and further research the present study includes limitations to consider when interpreting the findings. first, this study was exploratory in nature and, thus, it included a small number of homogenous participants located in one city in the united states. future studies should include a larger sample size with varied cancer diagnoses, genders, ethnicities, and socioeconomic statuses gathered from a more comprehensive geographical scope. in addition, future research should more closely examine patients’ expectations of provider information-giving processes. the interview protocol used in the present study did not explicitly ask participants about their expectations of providers related to information-giving (e.g., do patients expect providers to rush through appointments?). as such, in the future researchers should ask patients diagnosed with cancer whether they expect their providers to interact with them in more supportive ways (especially when providing in[page 118] [qualitative research in medicine & healthcare 2018; 2:7387 article no nco mm er cia l u se on ly formation) because of the serious nature of a cancer diagnosis when compared to the way they interact with providers for other medical reasons (e.g., gynecological needs, yearly check-ups). finally, future research should examine provider perspectives related to supportive communication and information-giving processes (e.g., do they believe information needs to be given in a supportive manner). provider perceptions of information-giving would be useful in understanding the challenges and opportunities that healthcare professionals face when meeting patient information needs and performing their job-related tasks. practical implications today there are many sources (e.g., healthcare providers, online support groups) of informational support for people diagnosed with breast cancer and, as such, their access to health information has increased substantially.21 however, patients often regard healthcare providers as prime source of cancer-related information, such as prognosis and treatment options.3 further, researchers have found that when patients perceive that their providers deliver support they are more likely to express satisfaction with their encounter and even follow directives more closely which may result in better health outcomes.11 thus, the present study findings have important implications for practitioners in two ways. first, they indicate that practitioners can enact specific behaviors (i.e., spending extensive time and thoroughly explaining information) to ensure that they frame informational messages in a supportive manner. as such, practitioners should consider incorporating these communicative strategies when imparting information to breast cancer patients. in particular, communicating cancer-related information in a supportive manner may be beneficial to healthcare providers who are digitally interacting with patients and may have difficulty establishing immediacy the same way they would be able to in face-to-face encounters. second, practitioners who practice supportive information-giving behaviors may find that their patients are more comfortable and receptive to the information provided and may be more likely to follow provider guidance (e.g., treatment plans, lifestyle changes). thus, providers should not discount the importance of acting in supportive ways when communicating cancer-related information and they should work to enact these behaviors to ensure that they meet patients’ informational needs. references 1. department of health and human services, centers for disease control and prevention, and national cancer institute. u.s. cancer statistics: 1999-2014. incidence and mortality web-based report 2017. 2. wolff ac, domchek sm, davidson ne, et al. cancer of the breast. in: niederhuber je, armitage j, doroshow j, et al., eds. abeloff’s clinical oncology. 5th ed. philadelphia, pa: churchill livingstone elsevier; 2014. pp 1630-1752. 3. rutten ljf, arora nj, bakos ad, et al. information needs and sources of information among cancer patients: a systematic review of research (1980-2003). patient educ couns 2005;57:250-61. 4. dakof ga, taylor se. victims’ perceptions of social support: what is helpful from whom? j pers soc psychol 1990;1:80-9. 5. nazione s, silk kj, robinson j. verbal social support for newly diagnosed breast cancer patients during surgical decision-making visits. j commun health 2016;9:267-78. 6. robinson jd, tian y. cancer patients and the provision of informational social support. health commun 2009;24:381-90. 7. robinson jd, turner j. impersonal, interpersonal, and hyperpersonal social support: cancer and older adults. health commun 2003;15:227-34. 8. sloan ag, knowles a. improving communication between healthcare providers and cancer patients: a pilot study. j commun health 2013;6:208-15. 9. dunkel-schetter c. social support and cancer: findings based on patient interviews and their implications. j soc issues 1984;40:77-98. 10. sanson-fisher r, girgis a, boyes a, et al. the unmet supportive care needs of patients with cancer. cancer 2000;88:225-36. 11. mills me, sullivan k. the importance of information giving for patients newly diagnosed with cancer: a review of literature. j clin nurs 1999;8:631-42. 12. albrecht tl, goldsmith dj. social support, social networks, and health. in: thompson tl, dorsey a, miller ki, parrott r, eds. handbook of health communication. mahwah, nj: lawrence erlbaum; 2003. pp 263-284. 13. albrecht tl, adelman mb. communicating social support: a theoretical perspective. in: albrecht tl, adelman mb, eds. communicating social support. newbury park, ca: sage; 1987. pp 18-39. 14. brashers de. communication and uncertainty management. j commun 2001;51:477-97. 15. palmer-wackerly al, krieger jl, rhodes nd. the role of health care provider and partner decisional support in patients’ cancer treatment decision-making satisfaction. j health commun 2017;22:10-9. 16. innes s, payne s. advanced cancer patients’ prognostic information preferences: a review. palliat med 2009;23:29-39. 17. cobb s. social support as a moderator of life stress. psychosom med 1976;38:300-14. 18. barrera m, ainlay sl. the structure of social support: a conceptual and empirical analysis. j community psychol 1983;11:133-43. 19. cutrona ce, suhr ja. controllability of stressful events and satisfaction with spouse support behaviors. commun res 1992;2:154-74. 20. goldsmith dj. communicating social support. new york, ny: cambridge university press; 2004. 21. wright kb, johnson aj, bernard dr, averbeck j. computer-mediated social support: promises and pitfalls for individuals coping with health concerns. in: thompson tl, parrott r, nussbaum jf, eds. the routledge handbook of health communication. 2nd ed. new york, ny: routledge; 2011. pp 349-362. 22. mcpherson cj, higginson ij, hearn j. effective methods of [qualitative research in medicine & healthcare 2018; 2:7387] [page 119] article no nco mm er cia l u se on ly giving information in cancer: a systematic literature review of randomized controlled trials. j pub health med 2001;23:227-34. 23. jenkins k, fallowfield l, saul j. information needs of patients with cancer: results from a large study in uk cancer centres. br j cancer 2001;84:48-51. 24. johnson jm, rowlands, t. the interpersonal dynamics of in-depth interviewing. in: gubrium jf, holstein ja, marvasti ab, mckinney kd, eds. the sage handbook of interview research: the complexity of the craft. thousand oaks, ca: sage publications inc.; 2012. pp 99-114. 25. charmaz k. constructing grounded theory. 2nd ed. thousand oaks, ca: sage; 2014. 26. charmaz k. constructing grounded theory: a practical guide through qualitative analysis. thousand oaks, ca: sage; 2006. 27. guy gp, richardson, lc. visit duration for outpatient physician office visits among patients with cancer. j oncol pract 2012;8:2s-8. 28. wilmot ww. metacommunication: a re-examination and extension. in: nimmo d, ed. communication yearbook 4. new brunswick, nj: transaction books; 1980. pp 61-69. [page 120] [qualitative research in medicine & healthcare 2018; 2:7387] article no nco mm er cia l u se on ly layout 1 introduction responsibility is a feature of all kinds of social structure, from small social units to large societal contexts.1,2 responsibility for work performance, objectives, tasks, and duties is also a crucial aspect of work and organizations. yet although this relational concept is an established element of individuals, groups, or societies,1 little is known about how responsibility is constructed in social interaction. this study aims to describe and understand responsibility construction in social interaction in hospital administrative groups. the performance of a hospital’s various systems (such as administration) and interrelated units (such as departments) affect the performance of the organization as a whole.3 in the daily work of hospitals, responsibility is a significant construct, often connoting medical responsibility. in this regard, safe information sharing, multi-professional collaboration, and decision-making in relation to patient care all require careful consideration in terms of responsibility and its distribution.4-6 yet, although administrative groups form an essential basis for organizational performance, earlier group and team studies in hospital organizations have tended to concentrate on healthcare teams.7,8 responsibility constructed in social interaction in administrative contexts, for instance, balancing the different expectations of medical and administrative work,8,9 may make the responsibility in social interaction in administrative work a more complex phenomenon to deal with. administrative groups, like the many kinds of management groups and staff group meetings, can be described as resource groups, which perform administrative and expertise-based work. they thus often bear a lot of responsibility in organizations. responsibility is not only a significant organizational aspect but also an important societal theme. responsibility is a significant issue at both organizational and societal levels. in finland, as in other nordic countries, a wide-ranging state-funded public sector delivers services like education and healthcare. consequently, administrative groups play a central role in society, as they are responsible constructing responsibility in social interaction: an analysis of responsibility talk in hospital administrative groups eveliina pennanen, leena mikkola department of language and communication studies, university of jyvaskyla, finland abstract the role of responsibility in hospitals is undeniable. although administrative groups are essential to organizational performance, previous group and team studies of responsibility in hospital organizations have concentrated mainly on healthcare teams. this study aims to describe and understand responsibility construction in the social interaction in hospital administrative group meetings, based on observation and analysis of seven administrative group meetings in a finnish hospital. categories generated by thematic content analysis were compared with responsibility types. the findings show that responsibility is constructed by creating co-responsibility, taking individual responsibility, and constructing non-responsibility. action and role and task responsibilities emerged as types from the interaction. to support employee involvement in responsibility processes, they must also be provided with sufficient resources to deal with that responsibility and to manage its different dimensions. these insights can be utilized to improve administrative groups. correspondence: eveliina pennanen, department of language and communication studies, university of jyvaskyla, po box 35, fi40014 university of jyvaskyla, finland. e-mail: eveliina.pennanen@gmail.com key words: administrative groups; hospital; responsibility; social interaction; workplace communication. contributions: the present article is part of the first author’s doctoral dissertation that was prepared under the supervision of the second author. conflict of interest: the authors declare no potential conflict of interest. funding: the authors report grants from the university of jyvaskyla, faculty of humanities, and from the finnish work environment fund (112304) during the conduct of the study. ethical statement: the study was approved by the central finland hospital district. the ethical principles of the finnish advisory board on research integrity (2015) were followed. received for publication: 2 october 2017. revision received: 27 august 2018. accepted for publication: 28 august 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright e. pennanen and l. mikkola, 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:154-164 doi:10.4081/qrmh.2018.7114 [page 154] [qualitative research in medicine & healthcare 2018; 2:7114] qualitative research in medicine & healthcare 2018; volume 2:154-164 no nco mm er cia l u se on ly for maintaining performance in these public organizations. this societal dimension also links administrative responsibility to institutional issues. the theoretical perspective adopted here is informed by lammers and barbour’s institutional theory of organizational communication.10 the concept of institution can be used to describe organizations, governing bodies, and some traditional professions (e.g., medicine), as well as practices, rules, behaviors, beliefs, or ways of thinking that can be characterized as continuing or fixed. as authority, status, or power is often emphasized, institutions extend beyond the particular organization; for example, the hospital institution includes not only the organization’s various units and professions but certain fixed ways of behaving, thinking, acting, and approving or justifying behaviors and beliefs.10 because institutions are created, reproduced, and sustained by social processes, communication plays a crucial role.10 in the present study, the hospital is approached as an institutional system, in which certain fixed practices and beliefs guide performance.10 the creation and distribution of responsibility can be understood as one aspect of these fixed practices, processes, and behaviors. for instance, professional roles entail certain traditional approaches to responsibility at work; doctors bear medical responsibility, and this affects how responsibility is perceived in other hospital work contexts, reflecting the institutional nature of hospitals. the perspectives of the institutional theory emphasize the meaning of administrative groups, such as management groups and of staff group meetings, in organizations. rather than performing manufacturing or operational processes, administrative groups produce various resources – for example, by coordinating, organizing, developing, innovating, and creating knowledge – and are commonly responsible for maintaining organizational processes.11 administrative groups may be both strategic and executive.12,13 because of their resource-related role, these groups are central to meaning in the processes and outcomes of organizations and their members.14,15administrative groups are commonly responsible for certain organizationally defined matters, and the dimensions of that responsibility are constructed through social interaction within these groups – for instance, when coordinating work.11 institutional organizing is adjusted through communication, and the institutional hierarchy is also established through these communicative organizing processes.10 it follows that social interaction in administrative groups reflects both the participants’ qualities and the institution beyond the organization, which also affects group behavior. social processes such as responsibility creation can therefore be seen to encompass both group and institutional levels. in hospitals, where responsibility and its distribution play a crucial role, it becomes important to understand the processes of responsibility construction in social interaction. earlier research on responsibility responsibility structures social reality, and as a social construction, it is also relational. for present purposes, we adopt lenk’s1 definition of responsibility as a relational construct – that is, responsibility arises when “someone is responsible to somebody for something in view of an addressee (object of responsibility) in relation to a normative criterion within a specific realm of responsibility and action” (p. 212).1 additionally, many responsibilityrelated phenomena are interconnected (e.g., internal/external control and accepting/denying responsibility).2 responsibility is also an attributional concept, where someone holds someone else accountable.16,17 in organizational studies, responsibility is often studied in terms of the social responsibility of a business or organization.18,19 business ethics perspectives have also informed investigations of internal stakeholders (e.g., obligations between employees and employers) and external stakeholders (e.g., responsibility to customers).20 however, this research has tended to focus on responsibility as something fixed or stable rather than as a dynamic process that is created, maintained, or changed in social interaction. in intraorganizational studies of teams and groups, responsibility means accepting or denying responsibility as part of the team’s or group’s activities – for example, being in charge of facilitating or improving the team’s work.21 the distribution of responsibility has also been studied in the context of responsibility rotation through collaboration among group members22 and of responsibility sharing, as in team empowerment and motivation arising from a sense of responsibility for or ownership of the work.23 by focusing on group activities, such studies have enhanced our understanding of targeted and shared responsibility. however, there is little understanding of how responsibility is constructed among people inside organizations, or of the forms that such responsibility may take. that information would help to clarify the various aspects of responsibility and to support employees in dealing with it. in healthcare contexts, the term responsibility often refers to medical or ethical accountability. it is important to properly understand who is in charge of what, as any lack of clarity about responsibilities threatens the safety of information-sharing processes.6 in particular, responsibility is central to handoff or handover situations – transitions in care during which patient information, authority, and responsibility are transferred between units, departments, employees, or shifts.6,24 handoff communication affects patient safety24 and organizational ethics in executing other processes such as communication of critical information.5 responsibility in healthcare contexts is also discussed in terms of shared decision making, as for instance when patients collaborate with healthcare professionals in making decisions about their care.25,26 these studies focus on specific situations and on the practices of healthcare teams. at the administrative level, there is [qualitative research in medicine & healthcare 2018; 2:7114] [page 155] article no nco mm er cia l u se on ly evidence that engaging and empowering hospital staff members in organizational decision making can contribute to a positive patient safety climate and positive organizational citizenship.27 this finding suggests that responsibility talk in administrative groups can support important institutional tasks by grounding performance. however, this neglected relational perspective has not yet addressed the types of responsibility discussed and constructed in administrative arenas. the present study broadens this area of research by exploring how responsibility is constructed in administrative groups and the types of responsibility constructed. lenk1 identified three types of responsibility: action, role and task, and universal moral responsibility. action responsibility refers to accountability for the outcomes and consequences of a given action. role and task responsibility relates to fulfilling the duties and expectations associated with a specific role or task at work or elsewhere.1 role duties may be assigned or informal; in organizations, they may be linked to institutional role responsibilities such as leadership.1 universal moral responsibility may be either direct or indirect.1 direct moral responsibility relates to someone’s actions and their consequences in a specific context;1 indirect responsibility arises at a more collective level and encompasses the actions of others, linking to group responsibility or co-responsibility.1 the present study applies lenk’s1 categories of action, role and task, and universal moral responsibility to the hospital context, which as an institution includes various levels of distinct and relatively fixed roles and tasks, and raises many moral and ethical questions. aim of the study the study seeks to describe and clarify responsibility construction as a communicative phenomenon in hospital administrative group meetings by addressing the following research questions. i) how is responsibility constructed through social interaction in hospital administrative group meetings? ii) what types of responsibility (action, role and task, universal moral responsibility) emerge from social interaction in hospital administrative group meetings? for present purposes, responsibility is seen to be created through social interaction, which is understood as a complex, situated, and mutual process, in which two or more people exchange messages to create shared meanings and accomplish social goals (p. 151).28 in healthcare organizations, social interaction is essential to creating and maintaining relationships, processing information, and creating an organizational culture.3 moreover, many of the activities that form part of organizational life emerge from social interaction and the relationships created through the processes of communication.29 to add to knowledge in this regard, the present study approaches responsibility as a neutral phenomenon rather than characterizing it as positive or negative. materials and methods data collection based on a qualitative design, observation and videoand audio-recording were used to collect data at seven administrative group meetings of one operational unit in a large finnish public hospital. this formed part of a larger research project exploring social interaction practices in hospital organizations (social interaction practices and well-being at hospital workplace, tsr112304). the unit was selected on the basis of a stated willingness to participate. all events occurred naturally and existed independently in the hospital workplace without the researchers’ intervention;30 this qualitative method of naturalistic observation obtains data as unobtrusively as possible.31 the data were collected between august 2012 and may 2013. the researcher who gathered the data attended the meetings but did not participate in the discussions. data were gathered from five management group meetings of the operational unit and from two employee cooperation meetings. the management group comprised 10 members, but only 6-8 attended each meeting. these meetings were chaired by the director in charge of the unit, who was also its chief physician. the other members included the department’s senior physician, head nurses and their deputies, four members of the nursing staff, and a secretary who recorded the minutes of the meeting. the agenda addressed administrative matters such as resourcing and facilitation of the unit’s work; its basic structure of the agenda was always the same and included finances, vacancies, and topical issues related to the unit. these meetings were held monthly, each lasting 45-70 minutes. data were recorded using a 360° panoramic camera; in total, 4 h 35 m of data were recorded. in finland, act-on cooperation in undertakings forms part of labor legislation. the law includes a negotiation obligation, which means that cooperation should be negotiated in undertakings involving 20 employees or more and where certain changes are planned.32 although such negotiations are often interpreted as terminations, targets do not always include staff reductions but commonly address collective development of the organization’s operations and employee involvement in decisions related to their work.32 both employer and employees (or their representatives) should be present at such negotiations.32 in the unit observed for the purposes of this study, cooperation negotiations were organized in relation to changes concerning services, work methods, and work hours, among other issues. the employee cooperation meetings from which data were collected were the only ones organized by the unit during the nine-month period of data collection. the 20 attendees at each meeting included employees (registered nurses, practical nurses, office secretaries, a departmental secretary, and employees who assisted in nursing work), managers (the chief physician, the head nurse, and the head [page 156] [qualitative research in medicine & healthcare 2018; 2:7114] article no nco mm er cia l u se on ly nurse’s deputies), employee representatives, and a labor union representative. the meetings were audio-recorded, as panorama video recording was not possible because of the meeting room facilities and the large number of participants. the first employee cooperation meeting lasted 1 hour and 3 minutes, and the second lasted 35 minutes. total recorded data from the management group and employee cooperation meetings amounted to 6 h 13 m. the study followed the national guidelines for research ethics: respecting participant autonomy, avoiding harm, and protecting privacy and data.33 in finland, an ethical review is not usually needed when the research participants are adults who volunteer to participate and when the study does not expose them to exceptionally strong stimuli or possible harm. on that basis, no irp approval was sought. analysis the analysis was performed in two phases. to answer the first research question, the aim was to determine how responsibility is constructed through social interaction in administrative group meetings. to answer the second research question, the aim was to identify which of lenk’s types (action, role and task, or universal moral responsibility) would emerge from these interactions.1 thematic content analysis was used in both phases of analysis.34,35 after identifying, coding, and categorizing any patterns in the data,35 the aim was to identify the types of responsibility1 these processes created. the analysis focused on patterns in the data that could be recognized and interpreted,34 based on what happened in the interactions between attendees at each meeting, concentrating on themes that could be identified at the explicit, semantic level (what was said) and those occurring at the latent, interpretive level (what happened in the dynamics of the interaction).34,36 the unit of analysis was thus either a meaning unit that consisted of expressions or statements that were part of the same main meaning36 or an episode of the interaction that comprised more than one participation.37 while the analysis focused primarily on verbal communication, interpretations also took account of nonverbal communication, as this forms part of the totality in which shared meanings are created.38 the recorded meetings were first transcribed, read, and watched or listened to in their entirety. the data were coded by making notes to become familiarized; the initial list of codes gathered ideas from the data that were of immediate interest within the study framework and objectives.34,35 the dynamics of interaction were highlighted during this phase, and episodes in which responsibility was taken, shared, denied, avoided, or otherwise negotiated were identified and selected for analysis. after the coding phase, the data were categorized on the basis of shared meaning. the aim was to interpret the dynamics of the interaction – in other words, to analyze what happened when responsibility-related themes arose in the meetings. the categories were labeled as sharing responsibility, taking responsibility, and removing responsibility. the categories were then reviewed and refined, and the essence of the interaction was identified.34 at this phase, the coded data extracts were read through and considered whether these were coherent in relation to the data set, to one another, and to the research objectives. this led to the creation of subcategories and renaming of the main categories to more accurately capture their meaning as creating co-responsibility, taking individual responsibility, and constructing non-responsibility. following the inductive analysis, the second phase focused on identifying the different types of responsibility emerging from social interaction in the meetings, based on lenk’s1 categories (action, role and task, and universal moral responsibility) and referring to the explicit level of interaction. action responsibility included matters related to actions, behaviors, or their consequences.1 role and task responsibility related to role fulfillment or tasks and duties.1 universal moral responsibility included the effects of the agent’s activity on the well-being of others.1these different forms of responsibility were identified in relation to the categories from the first phase of analysis, using qualitative content analysis to identify the interaction processes through which each was constructed. the trustworthiness of this analysis was strengthened by discussing methods and interpretations with colleagues in the research group. the results are presented thematically, based on the main categories; both research questions are addressed in parallel as they form a coherent ensemble. the data examples presented in this article were translated by the authors from finnish into english. the transcripts were anonymized to ensure that participants and departments could not be identified. in the examples, names of the units and treatments are replaced by xxx. results the meeting participants constructed responsibility by creating co-responsibility, taking individual responsibility, and constructing non-responsibility. table 1 presents the findings in relation to responsibility construction and the responsibility types that emerged from social interaction during administrative meetings. creating co-responsibility the process of creating co-responsibility entailed sharing of responsibility between two or more persons or was warranted by institutional factors such as organizational policies. attendees created co-responsibility through interaction by i) engaging someone else in the responsibility or ii) committing themselves to the responsibility. in this way, responsibility was not solely in the hands of the participant advancing the viewpoint or idea but was shared with someone or something else. [qualitative research in medicine & healthcare 2018; 2:7114] [page 157] article no nco mm er cia l u se on ly the process of co-responsibility creation occurred within the dynamics of interaction. at the content level, participants often explicitly stated that someone or something would participate in sharing the responsibility with them, and other participants responded by accepting this. construction of co-responsibility did not include rejection of shared responsibility, and attendees showed acceptance by acknowledging the matter addressed and moving on to the next topic, or by stating that the matter was acceptable to them. participants engaged another party in a responsibility by positioning someone or something else as co-responsible with them, stating that someone or something else supported the matter that they presented or that someone or something would join them in taking care of the matter. in expressing that someone or something else supported the presented matter, participants referred to an individual or entity that agreed and so shared the responsibility. participants often alluded to a higher level in the organizational hierarchy (occupied by a person or group) or to institutional features such as hospital policies or collective labor agreements that shared their viewpoint. in data example 1, the deputy engages both someone and something else in co-responsibility by referring to another manager and a collective labor agreement supporting the presented perspective. data example 1 deputy (d) 1: so, i asked [how] the head nurses of department 000 […] dealt with this issue. i mean, they face this same issue in their department; […] their employees need to work in various places,—so, she said they had long negotiations about this with employee representatives […] for […] months, and […] concluded that you could not include travel time in your work hours. — it would then be defined like this. or […] according to the [collective] labor agreement, it would unfortunately go like this. in referring to other head nurses and their information and to a collective labor agreement, d1 demonstrates that someone or something else shares responsibility. in this way, d1 creates co-responsibility. in the process of expressing that someone or something else would take care of the matter together with the participant presenting it, another party is taken to co-share the responsibility for an action or activities. by mentioning shared responsibility, the participants made the issues’ progress visible to one another. in data example 2, the chief physician positions the secretary as co-responsible for checking the schedules. data example 2 chief physician (cp): anyway, a cooperation meeting will be organized here in our office. it will now take place in april, but we will then check the exact date with anne. when the cp says “we will check the exact date with anne,” anne is positioned as co-responsible for ensuring the right schedules; in other words, the cp does not bear this responsibility alone. [page 158] [qualitative research in medicine & healthcare 2018; 2:7114] article table 1. responsibility construction processes and types of responsibility. responsibility positioning social interaction process message content type of responsibility construction creating positioning someone or engaging someone else someone/something else task and role co-responsibility something else as in responsibility supports the matter co-responsible with the participants someone/something will take action care of the matter together with the participant positioning oneself as committing oneself to taking care of the matter action co-responsible with responsibility together with someone else someone else taking individual responsibility bearer confirming responsibility taking care of something action responsibility that will happen bearing responsibility for action something that happened earlier constructing messenger distancing oneself from unwillingness to take task and role non-responsibility responsibility responsibility and shifting it to someone or something else incompetent/unsure refusing responsibility giving reasons for not taking task and role of one’s position responsibility no nco mm er cia l u se on ly committing oneself to the responsibility was another way of constructing co-responsibility. the participants showed that they could or would share the responsibility by expressing that they would take care of the matter together with the attendee who spoke of it or with someone else who was not present at the meeting. types of responsibility creating co-responsibility entailed dimensions linked to activities, tasks, and roles. stating that someone or something else supported the matter related to task and role responsibility, as this reasoning was based on the status of the person or group. this is demonstrated in data example 1, where d1’s reasoning is based on status. d1 refers to other head nurses (having the status of leader) and to a collective labor agreement (having the status of a formal rule or law). stating that someone would take care of the matter along with the participant was a form of action responsibility, as the process focused on activities. in data example 2, cp refers to another person (anne) who will be responsible for the action along with cp. in these responsibility types, information played a significant role as a dimension of action responsibility. in a hospital context, information can be seen to establish, verify, and justify an action, where expertise forms the basis for operations and their quality. mentioning that someone or something else supports the presented matter is a form of role and task responsibility. the reasoning was based on role duties or fulfillment of a certain role or task, as well as institutional role responsibilities, as the attendees referred to representative roles such as that of manager. committing oneself to responsibility is a form of action responsibility, as it focuses on future activities and taking care of them. attendee status and the topic under discussion seem to define participation in the interaction processes associated with constructing co-responsibility. someone with expertise on the discussed matter or credentials to influence others, such as a manager or a member of a certain project group, was engaged in the responsibility. an expert on the matter under discussion committed themselves to its related themes, and the discussion topic specified the creation of co-responsibility. when discussing challenging situations (e.g., some drawbacks at work), attendees indicated that their viewpoint was shared and supported by someone or something else (data example 1). taking individual responsibility in taking individual responsibility, participants themselves assumed responsibility for a certain action or item of information, and responsibility was created in the communicative processes of confirming. in their interaction, participants explicitly stated that they were in charge of something. individual responsibility was also negotiated with other attendees in situations where the others argued and showed support for the person who was trying to take individual responsibility. by positioning themselves as responsibility bearers, participants confirmed through their interaction that the responsibility was theirs by expressing that one would take care of something that would happen or that one would take responsibility for something that happened earlier. in data example 3, a nurse confirms that responsibility for their lapse of memory is their own. data example 3 nurse (n) 9: oh, guess what? i forgot to figure that thing out. well, i will ask and let you know next time how it is supposed to be done. by indicating to others that they would take care of the matter, the individual’s responsibility was also made visible to them. the procedure for writing the meeting minutes supported this kind of individual responsibility creation; although the secretary wrote the minutes throughout the meeting, it was highlighted that key issues needed to be carefully noted, and the responsibilities were often associated with those. data example 4 illustrates this kind of interaction. data example 4 d2: well, let’s write it down carefully now so that it will be taken into account. by expressing the importance of writing down a significant theme, d2 takes responsibility. taking notes also made responsibilities visible at unit or organizational level, and minutes were shared with other work groups and staff members. the responsibility was confirmed mainly by the head nurse and chief physician, who also had the formal power to proceed with the activities in their unit. taking responsibility for something that happened earlier was also covered by expressing that one would take responsibility for one’s actions. this occurred when participants recognized and explained their own errors – for instance, not doing something that they were supposed to do. in these cases, accountability for a mistake was not shifted to something or someone else but was presented as one’s own fault. this kind of responsibility-taking won support from other participants, who responded with acceptance. they showed support by justifying the error in terms of external factors, and the nature of the work (e.g., too much administrative work, complex hospital policies) was used to explain someone’s memory lapse. by showing acceptance, the others justified the individual’s mistake and diffused individual responsibility. types of responsibility action responsibility became visible in confirming that one took responsibility for one’s actions, and future and past dimensions of responsibility emerged. stating that one would take care of something was linked to the [qualitative research in medicine & healthcare 2018; 2:7114] [page 159] article no nco mm er cia l u se on ly future, where a participant said that they would progress a task or duty outside the meeting. this is the case in data example 3, where the participant says that they will take care of something outside the meeting and will inform others about it at the next meeting. the past dimension emerges in the process of taking responsibility for one’s actions, as the action or its consequences are explained. however, task and role responsibility were also seen to emerge from these processes if the actor positioned as responsibility bearer was considered. in many cases, the head nurse or chief physician accounted for their past actions or the consequences, and others justified it, so diffusing individual responsibility. constructing non-responsibility participants constructed non-responsibility by shifting responsibility from themselves (or from their own unit or group) to someone or something else. the process occurred in the dynamics of the interaction, which included a mutual negotiation of giving or offering responsibility but not taking it. responsibility was removed by i) distancing themselves and ii) refusing responsibility. these processes created the dimensions of willingness and the opportunity to influence work-related matters and take responsibility at work. participants distanced themselves from responsibility by positioning themselves as messengers delivering someone else’s message. this unwillingness to take responsibility emerged when someone stated that the shared information or viewpoint was not their own but came from someone or something else. often, the position of messenger was highlighted by reading a message, such as the minutes of another meeting. in this way, the participant distanced themselves from the responsibility, shifting it to the message sender or to an institutional body (such as another management group), whose information the participant was only reporting. in data example 5, a nurse distances herself from responsibility by bringing up a topic originally suggested by another nurse. at the end, however, she mentions that all of the other nurses also support the matter. data example 5 n10: well, i am saying this on behalf of matt mattson. this thing about these deputyships is that they are conducted in health centers. i will now read this in its entirety, so that it will be presented correctly as he has phrased it. so [starts to read]: “because of the expansion of the performance of the hospital, we face a new kind of situation. the deputyships are filled on a voluntary basis.” […] [reads the whole message explaining the flaws of the new situation in detail and then continues]. all in all, so that these deputyships can be covered without any difficulty, matt suggests that the travel time to other towns for these nursing deputy assignments should be included in work time, and that volunteers who are willing to travel to health centers would be asked [to take] these assignments in the first place. he thinks that it would be good to have 10 to 15 nurses ready to take these deputy positions to ensure that we can also cover our vacation periods. matt then adds: [reads] “for myself, i think the option of working in health centers too enriches my job, and i will also be happy to take these assignments in the future. i hope the issues i’ve raised will be considered” [stops reading]. as all of us xxx nurses broadly share these thoughts, it would be really good if travel time could be included in our work hours, as travelling extends the length of the working day by several hours. in that example, the nurse claims to be reporting something on behalf of someone else, so distancing themselves from responsibility. eventually, the responsibility acquires a collective dimension, as the nurse says that “all of us xxx nurses broadly share these thoughts.” rejecting/refusing to take responsibility occurred in an interaction in which responsibility was offered to someone who declined it, or where it was expected to be accepted but a reason was given for not doing so. participants did this by expressing hesitancy about their position. participants positioned themselves as incompetent by explaining that they had insufficient information to take responsibility – for instance, to make a decision. they reasoned that, because of their position in the organization, they lacked the necessary information, either because someone else was in charge of the task or because they did not receive the information from someone although they had requested it. in these interactions, participants refused responsibility by stating that they could not determine the right decision or how to perform the task or duty in question. they also rationalized their refusal by referring to insufficient opportunities to take responsibility or to their lack of credentials. in this way, the participants positioned themselves as unsure of their position. these processes also related to diffusing responsibility – for instance, the chief physician might first try to transfer the responsibility to a nurse, who would refuse and try to hand it back. in data example 6, the chief physician offers responsibility to the nurses by saying that they can decide for themselves how to handle a case involving new treatment practices. however, one nurse refuses the responsibility and tries to involve someone else in deciding or confirming what to do. data example 6 cp: so, they will need some patients for these training sessions. patients, xxx patients. because they have different kinds of equipment there, and they [nods toward n1] and you [nods toward n3] don’t know how to use them. n3: well, yeah. […] n3: what kinds of treatment, and how many of them, are needed? [page 160] [qualitative research in medicine & healthcare 2018; 2:7114] article no nco mm er cia l u se on ly cp: just whatever you have. i guess you just need to go through the appointment lists and pluck the xxx patients from there; this can be done over there, and then ask the staff who are there in these training sessions. n3: umm. cp: how about our nurses – is it possible for them to participate? n3: yes, it is. […] cp: yes, so patients are needed then, over there. n3: how many patients? pj: you know better yourselves. n3: it is […] n1: it will be like […] cp: so many patients that it won’t mean rushing around, but it should be possible to really concentrate on them [n3: i wish i knew…]. i think the trainer can tell you. n3: mmm. this data example illustrates responsibility rejection; the cp offers it, but the nurses do not take it. instead, they say they are unsure, and they try to get someone else to decide the right number of patients. in the end, the cp takes the responsibility by deciding that the trainer can tell them. in this way, the cp also diffuses responsibility by deciding that someone else can decide and provide the nurses with the right information. types of responsibility task and role responsibility emerged in refusing responsibility by distancing oneself from it. responsibility was shifted to someone or something else, referring to a role or task that explained the content of the message. in this way, responsibility was perceived to fall elsewhere and not to the individual reporting the matter. responsibility was often removed at institutional or organizational level, where a manager could shift it to higher management (“they decide”) or to the employees (“you know better how it should be done in practice”). equally, employees could transfer it to managers (“we are not sure how this should be done”). the nature of nursing work or managers’ work, organizational structures, the hospital culture, or a lack of certainty about future changes were used to position oneself as someone who could not or would not take responsibility, or was otherwise unsure about how to decide, act, or perform. responsibility was also diffused at a more abstract level, as it was not always specified or negotiated to whom the responsibility was shifted. to conclude, administrative work encompasses many elements of responsibility. responsibility was constructed by creating co-responsibility, taking individual responsibility, or constructing non-responsibility. while action responsibility and role and task responsibility emerged from these interactions, the data did not include universal moral responsibility. these findings are discussed in the next section. discussion our results suggest that collective responsibility is emphasized in hospital administrative groups. even individual responsibility construction was linked to collective responsibility, as it involved institutional memberships and referrals; in this way, responsibility construction became collective.1 this might be explained in terms of institutional role responsibilities, as responsibility often seemed representational, as in fulfilling the role of leader and its associated obligations, expectations, and responsibilities.1 collective responsibility was also created by diffusing responsibility, where others justified an individual’s actions or their consequences. this indicates responsibility management, where people attempt to regulate their feelings of guilt by rationalizing the action and its consequences, so putting attributions of responsibility into perspective. it is important to note that these justifications do not always deny accountability but offer reasons for reducing or removing blame and liability.39 this kind of responsibility diffusion can also be interpreted as a form of social support that helps employees to manage anxiety and stress at work.29 the findings also revealed instances of non-responsibility, constructed by distancing oneself and refusing to take responsibility. for example, positioning oneself as a messenger may be a strategy for saving oneself by declining responsibility for some controversial matter. montada39 noted that, by using this kind of strategy, one can protect oneself against blame, sanctions, and feelings of guilt and self-blame. however, our findings also suggest that responsibility may be rejected on grounds of a lack of ability or resources, which may also account for the findings regarding responsibility denial. for instance, nurses may refuse to take responsibility because they lack the necessary resources to deal with it, as their everyday work with patients is often based on someone else’s requests and decisions. in this way, institutional roles may also determine involvement in an administrative context. the present findings also illuminate the interesting role of temporality, as responsibility was created in both past and future dimensions. the results support birnbacher’s17 view that responsibility can relate to past activities or their consequences or to producing certain conditions of a specific matter. these processes can produce the shared reality of an organization’s past and future. interactions that reflect the past and anticipate the future can also contribute to the fixed nature of institutions that maintain their structure by creating accepted understandings of the work and the workplace. this also links to the relational level of the workplace; as well as providing the context in which social interactions occur, relationships also entail patterns, boundaries, and institutions that are created and evolve through dynamic interaction.29 as compared with roles, which are often perceived as relatively static, positions are ephemeral as collections of be [qualitative research in medicine & healthcare 2018; 2:7114] [page 161] article no nco mm er cia l u se on ly liefs that relate to group members’ rights and duties and to expectations to act and behave in a particular way.40-43 it follows that an individual’s role can encompass many positions, as this study’s findings also indicate. the data suggest that hesitancy about one’s own position emerges from the process of refusing responsibility. simultaneous membership of administrative and other kinds of group (e.g., healthcare teams) creates multiple roles and positions, and positions are also emergent and diverse within a single group. exploration of the social interactions in administrative groups identified both action and task and role responsibilities, but there was no evidence of universal moral responsibility. it may be that while action and task and role responsibilities are more readily identified at the explicit level of social interaction, universal moral responsibility may be located at a more latent level and is therefore less easily observed. as a matter of doing good to others,1 moral responsibility can be seen as a value that is interwoven with behavior that occurs beyond other realms of responsibility. in hospitals, moral responsibility may become explicit in other group contexts – for instance, where healthcare teams make treatment decisions that prioritize the patient and their situation. these findings suggest that, in hospital administrative groups, responsibility is constructed on many dimensions that stem from the institutional level, simultaneously creating and maintaining the institution. the institutional theory of organizational communication describes this mutual process by characterizing individuals in institutions as actors and carriers of the beliefs manifested in institutional practices, where institutions are produced and reproduced in human communication.10 social interaction in responsibility creation therefore involves both individual participation in administrative groups and institutional norms, rules, and practices beyond these groups. the meetings can be seen as specific rituals, forming part of the fixed practices that create the institution. as part of the institution, a meeting can be described as a framework that defines participants’ interaction. in a healthcare context, professional roles and their presentation can also affect communication behavior at the administrative level. in this way, the institution defines expectations and demands in relation to responsibility distribution and the involvement of administrative group members in responsibility processes. by examining how responsibility is constructed in naturally occurring interactions in hospital administrative groups, we now know more about responsibility creation in institutional settings as a relational phenomenon. the present findings indicate that in constructing responsibility, social interaction also establishes institutional features such as positioning in different roles and invokes procedures for handling that responsibility. consequently, processes and practices such as routines for reasoning and formulating responsibility shape ways of treating and responding to responsibility at work. the hospital as institution is constructed and maintained through observable behaviors of this kind. creating a shared understanding of accepted ways of engaging in or rejecting responsibility further sustains the fixed nature of institutions. limitations this study approached responsibility construction from the perspective of social interaction and provided a new understanding on this focal phenomenon at many levels of hospital organizations. despite the data’s suitable size for this study’s qualitative aims, more diverse data could have given a wider range of responsibility categories and types occurring in interaction. despite the natural setting, the researchers’ presence is always likely to influence data objectivity.31 this was taken into account in the research design. as the research period was quite extended and data were collected regularly, it could be assumed that participants became accustomed to the researcher’s presence, as indicated in earlier observational studies.44 when asked whether the observed meetings differed from their other meetings, participants indicated that the meetings were similar. as the data were collected as part of a larger research project, the credibility of the analysis was strengthened by discussing interpretations with members of the research group, who are familiar with the data. conclusions this study contributes to knowledge about responsibility construction in the social interaction processes that form and maintain institutions, organizations, and groups. one novel and interesting implication is that, as well as responsibility, non-responsibility is created in administrative meetings. these findings can assist the development of administrative groups and their social interaction processes and practices. by understanding these interactions, it becomes possible to improve them, so enhancing the quality of group work. it is important to recognize the various dimensions of interaction in which responsibility or non-responsibility is created, and to make these processes visible by talking about them and about their meaning in the workplace. in particular, these results can be utilized in healthcare organizations, which differ from many other settings in respect of tasks, administration, organizational culture, and the multiple hierarchies, cultures, and sub-cultures that shape daily organizational life.3 these results can also be used to improve well-being at work. given the challenges that may emerge in role and position negotiations, employees must be able to balance different responsibilities and demands.41 ambiguous positioning may cause stress and impair well-being at work,42 and social interaction is a key element in making sense of different roles and positions as identities are ne[page 162] [qualitative research in medicine & healthcare 2018; 2:7114] article no nco mm er cia l u se on ly gotiated, developed, and presented through processes of communication.43 employees’ capacity to manage their different positions should be acknowledged, as clarity in this regard can strengthen group performance at many levels by supporting individual performance and enhancing satisfaction within the group.41 in relation to organizational development processes, it is also essential to consider institutional aspects, especially in contexts such as hospitals. evaluating and developing the social interactions of individual groups may not be enough, and the institutional level should not be taken for granted as a stable and fixed construction. it is important to remember that institutions are both maintained and changed through social interaction,10 and that updating or developing practices and processes can also affect the institutional level. while administrative groups produce resources for organizations, their interaction processes can exert an influence throughout the organization. significantly, although nursing staff members are offered opportunities to participate in responsibility creation by joining the management group, the ways in which responsibility can be accepted or shared determine their actual potential in this regard. in other words, it is not just a simple matter of giving and taking responsibility if employees lack the capabilities or resources to deal with it. from an organizational and administrative perspective, it is important to find ways of supporting employees and their agency in responsibility creation and management. for managers, juggling responsibility sharing and being ultimately accountable can make administrative work challenging. by understanding that responsibility construction is a multifaceted process, managers can also support each other. the present findings provide interesting insights for future research. knowing how to support hospital employees in managing responsibility can enhance healthcare management, organization, and administration studies, as well as helping practitioners to enhance employees’ agency. further investigation of structures that promote or hamper involvement in responsibility creation is essential, along with research on the aspects of universal moral responsibility that did not emerge in this study. in healthcare organizations, which are based on the idea of helping and treating people, it would be especially useful to learn more about the 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[page 164] [qualitative research in medicine & healthcare 2018; 2:7114] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2017; 1:6152] [page 63] introduction hospice, first envisioned by dame cicely saunders, is a philosophy of care focused on helping dying people experience a good death, or a death free of physical and spiritual pain.1,2 saunder’s approach to caring for the dying included addressing what she called total pain – that is, pain constituted by physical as we all as spiritual, emotional, or psychological suffering.2 contemporary hospice organizations continue to draw on saunder’s inspiration and provide terminally ill patients and their families with whole person care, which addresses the five dimensions of quality of life (figure 1).3 this type and level of care is accomplished by an interdisciplinary team, and each member of the team is responsible for addressing at least one of the quality of life dimensions. the goal of maximizing quality of life over quantity of life is accomplished in part through pain and symptom management (palliation) known as palliative care. a hospice patient must, therefore, be primarily interested in a palliative plan of care and willing to discontinue curative treatments. in 2014, however, the centers for medicare & medicaid services announced the medicare care choices model — an experimental program that will allow medicare beneficiaries to receive hospice-like support services from certain hospice providers while concurrently receiving services provided by their curative care providers.4 the model will be phased in and evaluated over a two-year period beginning in 2016. aside from such experimental programs, forgoing curative treatment is a sign that the patient acknowledges her illness will likely end her life. the use of palliative care speaks to the philosophical commitment that undergirds hospice – to improve and maintain a dying person’s quality of life until their last breath. comfort is an essential characteristic of hospice care because adequate pain and symptom management alongside psychological and spiritual well-being enhances patients’ quality of life, and reresisting the hospice narrative in pursuit of quality of life jillian a. tullis,1 lori a. roscoe,2 patrick j. dillon3 1department of communication studies, university of san diego, san diego, ca; 2department of communication, university of south florida, tampa, fl; 3school of communication studies, kent state university at stark, north canton, oh, usa abstract the overall hospice philosophy is to provide care that enhances a dying person’s quality of life. most individual’s quality of life is improved when they embrace hospice eligibility and reimbursement requirements, such as stopping burdensome and ineffective curative treatment, addressing pain and other symptoms, and seeking avenues for closure. however, this institutionalized prescription for enhancing quality of life at the end of life does not work for all patients. this article considers what happens when patients’ personal definitions of quality of life at the end of life resist the prevailing narrative of appropriate hospice care. using a series of examples from more than 600 hours of participant observation, our findings reveal narratives of resistance that fall into three themes: i) patients and/or family members who deny the imminence of death despite an admission to hospice; ii) patients who request treatments usually defined as curative; and iii) patients who resist the organizational constraints imposed by the institutionalization of the hospice model of care. analysis of these themes illustrates the subjective nature of quality of life at the end of life and the pressures of standardization that may accompany the growth and maturity of the hospice industry in the united states. correspondence: jillian a. tullis, department of communication studies, university of san diego, 5998 alcalá park, san diego, ca 92110, usa. tel: +1.619.260.6897 – fax: +1.619.260.4205. email: jtullis@sandiego.edu acknowledgements: we would like to express our sincere thanks to the hospice patients and families who allowed us into their lives during this sacred time. and to the dedicated hospice staff for their time and commitment to the people they serve. key words: death; end of life; medical communication; palliative care. contributions: each author collected data independently for this study and each contributed to the drafting and editing of the manuscript. each author will be responsible for final approval of the final version of the essay should it be published. conflict of interest: the authors declare no potential conflict of interest. note: portions of this manuscript were presented at the national communication association conference in las vegas, nevada in november 2015. received for publication: 11 july 2016. revision received: 10 march 2017. accepted for publication: 14 march 2017. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright j.a. tullis et al., 2017 licensee pagepress, italy qualitative research in medicine & healthcare 2017; 1:63-72 doi:10.4081/qrmh.2017.6152 qualitative research in medicine & healthcare 2017; volume 1:63-72 no nco mm er cia l u se on ly search has consistently demonstrated its importance to dying patients and their families.2,5-10 while all hospices are driven by the same goal – a good death that is natural and pain free – the focus on quality of life is more complicated to achieve than managing or alleviating a patient’s physical or psychic pain. minimizing all sources of suffering is key, and so is maximizing sources of pleasure, joy and meaning in a dying person’s life. quality of life is subjective and multifaceted; therefore, it can be defined quite differently from person to person.11 the hospice philosophy espouses an individualized approach to care developed in conjunction with patients (and their loved ones) to address these variations, yet in practice there are limitations placed upon hospice organizations that can undermine individual patients’ quality of life goals and the founding principles of hospice. for example, some medical treatments considered curative, which might contribute positively to a patient’s quality of life, are prohibited because of reimbursement rules and costs. most hospices in the united states are reimbursed for care through a national healthcare program known as medicare. hospices receive a daily per diem for hospice services. the price is fixed and not influenced by the extent of care provided. chemotherapy is usually considered a curative treatment modality, but in some cases can be palliative; tumors may shrink and cause less discomfort, and some patients report a psychological boost from continuing chemotherapy.12 the bulk of hospice care is delivered during a typical eight hour business day, with very little care provided in the evenings, at nights, or on weekends, despite a patient’s or their family caregiver’s needs. health care practitioners’ training about what constitutes medically necessary care, symptom management, and criteria for admission and on-going certification in hospice can also sometimes work counter to patients’ conceptions about what contributes to their comfort and quality of life. for example, giving patients enough pain medication to fully control their pain may also leave them drowsy and unable to interact with their family members. as bochner, ellis, and tillman-healy explain, canonical narratives are those that represent the ‘right story’ which, on the whole, is taken for granted as the way things are supposed to work.13,14 in conjunction with institutional policies and procedures (at the political and organizational level) that regulate access and formally define legitimate behaviors within the hospice system, the canonical narrative associated with hospice care influences what is possible for patients and their loved ones at the end of life. the prevailing hospice narrative about a good death might vary slightly from state to state and from agency to agency, but generally conforms to the following values. a natural, pain-free death is the goal; therefore, any actions that would hasten or prolong the dying process are discouraged and prohibited. quality of life is preferable to quantity of life. patients should seek comfort care rather than treatments designed to cure disease or prolong life (keeping in mind that good pain and symptom management often do result in patients living longer).15,16 most patients wish to die at home, and most hospice care is pro[page 64] [qualitative research in medicine & healthcare 2017; 1:6152] article figure 1. five quality of life dimensions that guide hospice care. no nco mm er cia l u se on ly vided in residential settings, which include nursing homes and assisted living facilities.17 the unit of care is the patient and family (as designated by the patient), not the patient-physician dyad, and family caregivers’ concerns and needs must also be taken into account. the hospice philosophy and the practices that constitute hospice care combine to create a narrative that includes acceptance of death as a natural part of life that should not be prolonged nor accelerated, where pain and suffering are controlled, and where hospice staff hold the expertise to help patients accomplish a good death. a common refrain in hospice is that practitioners take their knowledge of palliative care and come alongside hospice patients and their families, and meet them where they are to work together on their journey towards a good death.18-20 many writers and scholars17-20 have argued that dying and death are experiences many people are sheltered from due to medical advances, industrialization, and cultural and social norms. patients and their loved ones are at a disadvantage when faced with a terminal illness, as a hospice admission may be the first time anyone has ever wanted to talk about what a good death may mean or how it might be accomplished. therefore, an organization such as hospice that openly accepts death as a natural part of life can offer several benefits. for patients and their loved ones, the foundations of hospice mean an interdisciplinary team will offer support in the form of their expert knowledge about the dying experience that addresses physical pain as well as existential suffering. more specifically, hospice staff will engage in conversations that allow them to assess the medical, social, psychological, and spiritual needs of patients and their families. for example, if there are conflicts among siblings about what type of care their mother wants or needs, hospice staff possess the skills to not only recognize these issues, but also address them. should a patient have limited social connections, miss attending church, or have limited mobility that makes bathing difficult, hospice will respond with visits from a volunteer, a chaplain, or home health aide, respectively. hospice should not only help educate patients and their family caregivers about the dying process, but also respond as patients decline and their needs and desires change. patients and families should find the types of questions that guide hospice care different from other types of healthcare because in order for a patient to live fully until she dies, and to address her needs during the dying process, communication about what makes life meaningful is necessary, as well as what is happening with the patient emotionally and physically. patients and families will not be abandoned in their time of need when curative medicine is no longer an option, but instead will be cared for until the end. hospice has evolved significantly since saunders founded st. christopher’s in london and its subsequent migration to the united states in the 1970s. once an allvolunteer social movement actively resisting the medicalization of dying and death, and paternalistic approaches to care at the end of life that dehumanized individuals, it is now a highly structured medical institution that has come to define the right way to die.21 these processes and structures influence the ways in which hospice staff and patients communicate and work together to accomplish a good death.22 while there is a clear narrative within hospice, it is less clear what happens when patients’ experiences and goals do not fall neatly into the existing dominant hospice narrative. in this manuscript we explore three themes to understand how patients and families enact resistance in hospice settings. we discuss the instances in which a dying patient’s ideas about quality of life ran counter to the hospice narrative about what constitutes a good death. we present and analyze patients’ opposition to plans of care and how they communicated their quality of life needs. and finally, we consider how the ways in which these messages are understood and acted upon by hospice staff members provides a unique examination of both patient and practitioner communication. the concept of narratives of resistance provides a useful theoretical framework to understand the significance of these interactions and their outcomes. narratives of resistance human beings are not condemned to live out particular stories, even powerful canonical narratives, without hope for change.13,14 part of the power of narrative is the ability to account for how one’s actions deviate from alternative narratives in ways that make them seem reasonable or justified.14 as bochner and colleagues note, social actors continually (re)create the social world through introducing new stories and altering existing narratives within particular cultural and structural systems.13 mishler calls patients’ stories that fall outside the boundaries of our expectations in healthcare contexts narratives of resistance.23 these counter narratives, or what stone-mediatore calls marginal experience narratives, are representations that allow alternate perspectives that may be missing or underrepresented to be communicated and acted-upon. 24 narratives of resistance are important to identify and attend to because they help us examine taken-for-granted assumptions, can change cultural scripts, and present different ways of experiencing and communicating about health.24 according to stone-mediatore, narratives from dominant perspectives tend to be endorsed and repeated by powerful institutions, with the result that the narrative character of these representations passes unnoticed as they come to be accepted as ‘common sense’ knowledge.24 stories of patients who refuse to follow their physicians’ recommended course of treatment in order to meet some other goal run counter to the cultural and social assumption that doctors know best. for example, a patient may tell her physician that she will not take the prescribed pain medication so that she can stay coherent enough to communicate with visitors. it may seem like common sense to [qualitative research in medicine & healthcare 2017; 1:6152] [page 65] article no nco mm er cia l u se on ly control pain, especially in hospice, and as such, the decision to focus on pain control is a priority or value held by the institution and its members that is rarely questioned. narratives of resistance provide alternative forms of knowledge important for countering dominant narratives and incorporating already marginalized individuals into society.13,14,24 according to mishler, physicians and other healthcare practitioners focus on the voice of medicine (which centers on talk about symptoms and treatment options) and not the voice of the lifeworld (where patients’ discourse and concerns concentrate on the everyday effects of illness).23 as a result, patients’ concerns about how their illness might affect their lives and overall wellbeing might be ignored, even by hospice organizations with an explicit mission to attend to patient-specific preferences and values. narratives of resistance, if they are attended to by practitioners, can help patients feel as if they have some control and a voice in the process of their care. further, such stories about resistance can reveal issues of power and hierarchy within the patient-physician relationship, or between the hospice philosophy and reimbursement structures and patient preferences. as dutta notes, attending to such narratives of resistance is a necessary first step toward transforming restrictive (or oppressive) institutional policies and practices.25 we next describe the approach used to identify and analyze such narratives of resistance in hospice, and then discuss the themes that emerged from our analysis. methods this investigation of narratives of resistance draws upon existing data from approximately 600 hours of participant observation and interviews with hospice patients and lay caregivers at three not-for-profit hospices in the southeastern united states. these earlier ethnographic projects all received institutional review board approval at the authors’ respective institutions and study sites. other findings from these data have been published elsewhere.22,26-29 in each of these studies, our methods included audiotaped and transcribed interviews, and detailed field notes of our observations. what we noticed in the course of pursuing these studies was that some patient narratives about their experiences with hospice care fell outside of the goals of those projects. in each of these other studies, although not common, some narratives of resistance were present and deserving of exploration in their own right. a re-examination of our field notes and interview transcriptions revealed instances in which conflict related to a patient’s hospice plan of care arose. these cases were further analyzed and three themes, threads which run through the data, were identified.30 the examples discussed here are based upon actual patient interactions, therefore, pseudonyms are used to protect the confidentiality of patients and their families. in some cases diagnoses and other personal details have been changed to further safeguard patients and the hospice staff who provided care. the exemplars presented sort into three themes: i) patients and/or family members who deny the imminence of death even though they have been admitted to hospice care; ii) patients who request treatments usually defined as curative which challenge the hospice philosophy of palliative care; and iii) patients who resist the organizational constraints imposed by the institutionalization and bureaucratization of hospice. these themes describe the ways in which patients resisted the dominant conceptions about what constitutes quality of life put forth by the prevailing hospice model of care. denying the imminence of death americans live in a death-denying culture and are socialized to believe that a prescription medication or procedure at a particular hospital or cancer center can all but render death optional. doctors routinely over-estimate life expectancy after serious illnesses are diagnosed,31 use euphemistic language to convey prognostic information,32 or avoid the subject of death altogether.33 patients admitted to hospice might still wish to deny they have a limited life expectancy. the first theme of resistance narratives highlights patients and family members who deny or resist the imminence of death, even though they have accepted admission to hospice care (which requires a limited life expectancy). for example, three hospice patients with cancer shared stories in their interviews that centered on their unmet expectations for physical improvement. although these patients understood that hospice is end-oflife care, they agreed to receive hospice care believing that they would soon be well enough to return to curative treatment. kevin, a 58-year-old patient with cancer, explained: when i started hospice, i was thinking it would be like a time-out from my treatments. i had lost a bunch of weight and wasn’t feeling great. i don’t think it’s the cancer though; i think it’s the treatment. i don’t think i’m dying from the cancer yet, but i couldn’t go on with the treatment and the stuff that came with hospice — things i wouldn’t have otherwise — sounded good. so, i said i’d do it, but there’s no doubt in my mind that i’ll be back to chemotherapy as soon as i can. mandy, a 72-year-old patient with cancer, described a similar experience. i’m happy with the hospice people and everything, but i thought i wouldn’t be doing this for so long. my neighbor’s sister had been in hospice and got better. i was hoping it would be the same for me, she explained. the belief that hospice care would serve as a break or as a way to prepare for additional treatment also extended to patients’ family members. for example, geraldine and carla — two women who served as the primary caregivers for their mothers — both recounted viewing hospice as a mechanism for their mothers to regain their strength before resuming treatment. as carla stated: yeah, hospice, the lady from hospice, i talked to them. she was saying stuff like it could be a couple of [page 66] [qualitative research in medicine & healthcare 2017; 1:6152] article no nco mm er cia l u se on ly weeks, a couple of months, a couple of years, nobody knows, you know that sort of thing. so i was not thinking weeks, that part, i guess i didn’t focus on, i didn’t hear, i am not sure what happened with that. i was just thinking that, you know, she was gonna spend some time recovering and then she’d be back with the doctor. that was my hope. it was my only focus. getting her better and back to being treated. it didn’t happen. she only lived for three more weeks. while carla expressed disappointment that her mother died soon after entering hospice care, geraldine noted that, at the time of our interview, her mother was doing better and was getting closer to going back to the doctor. when people make sense of terminal illness and hospice care, it is often intertwined with conceptions of hope.34 as patients and caregivers found themselves living in what ellis described as two simultaneous realities—one in which the end of life was near and one where recovery was still possible—it was clear that many attempted to maintain the more hopeful frame that they or their loved one would eventually overcome their illness.34 when asked why they were in hospice, bonnie responded for her husband frank (62-years-old) saying, the doctor just thought we could use more help, never acknowledging that terminal mesothelioma was the diagnosis that warranted frank’s admission to hospice. these stories demonstrate the complexities of hope in the context of terminal illness and hospice care, but they can also provide hospice staff charged with caring for patients with valuable information about families’ orientation to care and to dying. in a persistently death avoidant society like the united states, where patients [and their loved ones] experience illness as a breach, an interruption, or a rupture in their life story, and doctors comprehend death largely as a defeat, a hopeful future often becomes synonymous with returning to a previously healthy state.35 while this frame may serve a valuable sensemaking function and aid in coping, it may also make it more difficult for hospice staff to help patients and families address the realities of impending death. patients, for example, may delay getting their affairs in order, making funeral plans, or seeking closure in important relationships; hence, while it may appear entering hospice care means patients and their loved ones have started moving down a path of accepting that death is near, these narratives of resistance suggest this may not always be the case, calling into question the significance of acceptance to achieve a good death. these stories also raise questions about the necessity of accepting the inevitability of one’s death in order to enter hospice care. approximately one in five (i.e., more than 280,000) hospice patients are discharged alive each year; many of these patients return to curative treatment.36 these data suggest that patients’ and families’ hopes for recovery and/or continued treatment are not wholly misguided, even if they remain the less likely outcomes. previous studies suggest, however, that patients and their families may be unwilling to share such hopes if they fear that they will be denied hospice services;37 furthermore, in some cases, maintaining hope for recovery (even while acknowledging that the end of life may be near) is tied to important cultural and religious beliefs/values.38 it may, thus, be more productive for hospice providers to encourage patients and families to express such hopes and work through them rather than overtly (or tacitly) discourage such disclosures. requesting curative treatments another category of resistance narratives focuses on patients who continue to request curative treatments following an admission to hospice. some hospice organizations are able to offer these more intensive and expensive treatments; for instance, approximately half of the hospices in the u.s. permit admitted cancer patients to continue with chemotherapy while under hospice care.12 schonwetter and colleagues compared hospice patients who continued chemotherapy with a control group of hospice patients who discontinued chemotherapy upon admission to hospice.12 findings revealed that the patients in both groups were similar in reported symptom distress, but patients who continued receiving chemotherapy reported significantly more subjective benefit, although the groups showed no difference in survival rates. some patients reported that continuing chemotherapy helped them remain hopeful about their prognosis, and they received a psychological benefit from continuing to fight their disease. for these patients, the symbolic meaning of continuing to fight their disease contributed positively to their quality of life. in our observations, we have also met patients and families who are committed to physical therapy and maintaining exercise regimes, despite risk for falls or increased pain, in hopes of getting stronger and recovering. for some patients, unusual medical interventions or treatments contraindicated for patients with limited life expectancy are exactly what is desired and needed to promote quality of life. consider the request of bill, a 76-year-old hospice patient with stage iiib non-small cell lung cancer, who subsequently developed bradycardia (slow heart beat). after a thorough evaluation, his cardiologist (who treated cancer patients exclusively), recommended a pacemaker. the patient was apprised of the benefits and burdens of this intervention, including the information that the pacemaker could be discontinued at any time at bill’s request, and provided informed consent. within two days, the patient was discharged to his home, where the device relieved his shortness of breath and periodic fainting, and permitted him to walk unaided from his bed to his living room couch, which he reported was a great joy to him during his last month of life. once bill entered the active phase of dying, however, he requested deactivation of his pacemaker. [qualitative research in medicine & healthcare 2017; 1:6152] [page 67] article no nco mm er cia l u se on ly while the insertion of the pacemaker contributed to bill’s quality of life, discontinuing pacemakers and other implantable cardiac devices at the end of life remains controversial.39 some ethicists make distinctions between devices that replace an organ or body part (such as a transplanted kidney), which become an organic part of the patient; these cannot ethically be removed, even when a patient is dying.40 substitutive devices (such as implantable cardioverter-defibrillators or icds) also provide a lost function but do not become organic body parts and so can be discontinued at the patient’s or surrogate’s request.41 pacemakers fall somewhere in between organic body part and substitutive device. of a survey of over 5000 medical professionals, legal professionals and patients, most respondents thought device therapy should be withdrawn if the patient requested its withdrawal at the end of life. opinions of medical professionals and patients, however, tended to be dependent on the type of device, with turning off icds being perceived as more acceptable than turning off pacemakers, whereas legal professionals tended to perceive all devices as similar.42 what is most important is that conversations about deactivation begin when patients and physicians are discussing whether or not to implant a device.43 this controversy cannot be avoided among patients who enter hospice care with implantable devices, so the question becomes whether the patient’s enhanced quality of life, even for a short time, is worth the subsequent controversy or additional decision making about discontinuing pacemaker support. sonia, a 79-year-old hospice patient with widely metastatic breast cancer, described her primary joy in life as watching television. unfortunately, sonia had cataracts, which made this activity impossible. cataract surgery is generally a low risk, outpatient procedure with almost guaranteed results. sonia was only expected to live for a few weeks, so hospice staff questioned whether undergoing surgery was advisable, even if it would undoubtedly enhance her quality of life. sonia thought so and her surgery was successful, even though her hospice care providers strongly cautioned her against undergoing surgery given her complex medical status and prognosis. both bill’s and sonia’s stories raise philosophical issues and ethical dilemmas. yet both were highly satisfied with the interventions they chose, which not only improved their quality of life, but also enhanced their autonomy, both of which are important to patients who are dying and foundational to achieving a good death.5-10 although the previous two cases had positive outcomes for the patients, it is important to acknowledge that not all requested interventions or narratives of resistance lead to favorable outcomes. jane, a 58-year-old matriarch, was dying of breast cancer and eventually stopped eating. she showed no interest in food and was unable to feed herself, which is a natural aspect of the dying process. jane’s family insisted on tube feeding. this request met the family’s emotional need to feed their loved one, and perhaps in their minds ensured her quality of life, it also contradicted the hospice narrative that patients should not request or accept futile treatment. in this case, the hospice staff relented, at least temporarily, and the results were devastating. jane, unable to digest the nutrition, began vomiting feces. in the case of jane, it’s not clear if tube feeding is what she would have wanted if she could have spoken for herself. what is more clear is that moments of resistance that run counter to the hospice philosophy can challenge hospice staff to communicatively manage the dialectical tension between replacing aggressive treatment with palliative care while at the same time valuing patients’ and their loved ones’ preferences and subjective definitions of quality of life. jane’s story reveals the consequences of relying too heavily on one dimension of quality of life with a missed opportunity to consider the well-being and spiritual dimensions of care to address the basis of this family’s resistance. this example also demonstrates the deleterious effects of failing to engage in the type of dialogical communication necessary to best manage conflict and tension regarding a patient’s plan of care. refusing to accept organizational constraints the third theme we examine here are patients who refuse to accept organizational constraints as part of hospice care. two cases, both involving women with terminal cancer, illustrate this theme. mary, a 58-years-old, was dying of colon cancer but had also used a wheelchair for 30 years because of mobility issues caused by parkinson’s disease. as months passed, mary’s colon cancer worsened and she got weaker and more dependent upon help with activities of daily living. since she lived at home and had no familial support nearby, mary hired home health aides to supplement the care she was receiving from hospice during business hours. determined to die at home – one of hospice’s commitments to their patients – mary increased the home health aide support as her physical abilities declined. the home health aide provided by hospice became a beloved caregiver until one day when she was suddenly and unexpectedly removed from mary’s care team with no explanation. the hospice home health aide’s replacement was disrespectful and repeatedly made derogatory comments about mary’s body and bodily functions. the aide complained about how mary smelled while changing her after a bowel movement and grimaced at the sight of the wound caused by the cancer in her breast. mary was beside herself about the change, and felt demeaned by the new staff member, but she refused to speak up. she has outlived her initial prognosis of six months, and she feared that a formal complaint would only lead to reprisal in the form of worse care or being discharged from hospice, the latter of which would force her into a nursing home. mary felt tremendous anxiety about the possibility of being moved into a nursing home, but was humiliated by a member of her hospice team; the lack of [page 68] [qualitative research in medicine & healthcare 2017; 1:6152] article no nco mm er cia l u se on ly control she had about who would care for her all compromised her quality of life. mary’s insistence that she die at home, but more importantly her silence regarding her care, was her resistance. the second example of refusing organizational constraints involves, angela, a 35-year-old mother of five diagnosed with breast cancer, complicated by morbid obesity and a fractured disc in her back. angela and her children moved in with her sister and brother-in-law after her diagnosis. bed-ridden and dependent on her brother-in-law for the majority of her care, angela could only have visits from the volunteer, chaplain, or nursing staff when her brother-in-law or her sister approved. angela’s sister and brother-in-law were less than willing to let hospice dictate the schedule of care. while this was a source of frustration for the hospice team and for angela as well, it was one way for this family to resist the hospice narrative that includes a passive and accommodating patient and family. as a result of these conflicts, several members of the hospice team were pulled from service and prohibited from visiting. the hospice team leader did not attempt any problem solving – the family was told they would have to conform or lose care – and there was no conversation during team meetings about why angela’s family caregivers were reticent to freely accept hospice services on the organization’s terms. for almost two weeks, angela received no social or spiritual support before she died. both of these exemplars have one thing in common, hospice teams neglected to inquire about why their patients and families were resisting. they did not attempt to empower patients, and instead opted to assert organizational control, one that maintains hospice staff as the exclusive authority on the needs of dying individuals. as hospice agencies grow and the industry matures, it is inevitable that organizational rules and procedures will be put in place to standardize care. more is known about best practices as a result, and it is easier to train staff to provide care that is consistent with organizational standards. standardized care, however, is inconsistent with the stated hospice philosophy and promise to meet patients and their families where they are. as the examples provided here indicate, such organizational efforts may directly affect patients’ experiences, are lacking in compassion, can undermine patients’ autonomy, and can negatively influence their quality of life. results and discussion the end of life is a complicated time for terminally ill people and their families. our use of mishler’s23 concept of narratives of resistance helps to acknowledge issues of power and hierarchy in healthcare contexts, which are frequently ignored. recognizing and then responding to these narratives can create space to integrate the experiences of those who are on the margins into the larger narrative of hospice. since our participants are deceased and not able to tell their own stories, we attempt to bring their experiences into the fold. as the examples here illustrate, there are numerous ways in which people can enact resistance and assert themselves at the end of life that are both active and passive. the three themes presented here, denying the imminence of death, requesting curative treatments, and opposing organizational constraints, illustrate the types of resistance narratives we have observed in hospice. they are important forms of health communication about quality of life, autonomy, values, and goals at the end of life. what constitutes quality of life is a unique reflection of an individual’s values and preferences and these characteristics are essential for achieving a good death for hospice patients. these narratives of resistance challenge hospice providers to consider how to respond when patients and families do not fully embrace a standard hospice plan of care, and when patient and family preferences might be communicated in unconventional or subtle ways. medical care is important, but these narratives highlight the importance of the four other dimensions of quality of life and how their expression may vary from patient to patient.22 these moments of resistance should serve as clinical communication triggers that prompt hospice staff members to enter into conversation with patients about their care needs rather than interpreting this resistance as noncompliance. the hospice agencies caring for the patients who enacted the resistance narratives we analyzed continued to provide good care for their patients the majority of the time. while the care described in the third theme is questionable, the hospice team members involved did engage in post-death debriefings in an effort to improve care in the future. nevertheless, each patient or their surrogates either received push back from the hospice agencies, or felt as if they would be censured if they voiced their concerns. rather than view these moments of resistance as failures on the part of hospice staff to anticipate patients’ needs or meet quality of life goals, we want to frame them as clinical opportunities. these narratives of resistance may speak to a related issue about the evolution of hospice and subsequent structural and institutional changes. reimbursement structures, for example, have changed little since national law formalized the medicare hospice benefit in the 1980s.44 no matter the amount or type of care, hospices receive a per diem rate of about $150 usd. in 2016, a rules change modified reimbursements in the hopes of making long stays less profitable by decreasing the per diem rate after the first 60 days of enrollment.45 while these changes may encourage hospices to be more selective about who they enroll and when, they do not correspond to the changes in the type of diagnoses that bring patients to hospice, the unique types of care they need, or the internal processes, such as electronic documentation, which place more demands on team members’ time. while hospice leaders may see the ways in which these changes influence the [qualitative research in medicine & healthcare 2017; 1:6152] [page 69] article no nco mm er cia l u se on ly workforce, it is not clear if they are equally aware of the ways in which such institutional forces move care further away from the foundations of hospice, which were driven by maximizing an individual patient’s quality of life. there are others ways in which institutional practices in hospice, specifically communication practices, can work counter to the hospice philosophy.22 an emphasis on lists (e.g., medical eligibility for hospice) versus patients’ stories during team meetings places a greater emphasis on biomedical care than on other dimensions of quality of life.22 as whitney21 notes, the discourse in hospice and palliative care settings then begin to resemble the very biomedical systems hospices sought to resist rather than an organization that provides unique and holistic care. in turn, what constitutes a good death is narrowly defined and cannot realistically deliver on a promise to provide individualized care.21 if hospice staff members view their patients’ resistance solely as barriers to the delivery of care rather than efforts to exercise autonomy and opportunities to fine-tune care plans, they will lose standing in the communities they hope to serve. other organizations and individuals, such as end of life doulas, may succeed in fulfilling the needs of dying people and their families by engaging in explicit talk about the dying process and accommodating quality of life needs. there are several points during the course of an illness when patients may feel uncertainty. entering hospice is one of them, especially considering how little exposure many have to the dying process. patients and their families may find the onslaught of new healthcare providers, new medical equipment, new medications—not to mention a new philosophy of care, changed goals for treatment, and more certainty about their prognosis—difficult and uncomfortable. it is at this time they may feel least able to say no or to voice their preferences and concerns. what these narratives of resistance reveal is that unless members of the healthcare team have created the space from the very beginning for patients and their loved ones to establish their own boundaries or change their minds, it is not likely to occur later when patients are weaker, family members are tired, and both are more reliant upon hospice personnel than before. these cases highlight opportunities for hospice providers to put the hospice philosophy of care into action by exploring the needs of their patients, whether they accept hospice but resist the imminence of death, continue to want curative treatments, question the organizational rules and procedures, or demonstrate their autonomy in other novel ways. hospice philosophy advocates hope, not for a cure but for a death free of spiritual and physical pain. for some dying patients, hope may come in the form of invasive interventions and tedious medication regimens generally regarded by hospice professionals as unnecessary and inappropriate at the end of life. these cases may encourage us to rethink our less is more at the end of life bias in the contexts of hospice and palliative care. resistance should first give hospice practitioners pause and then call upon them to consider the ways in which certain interventions or practices (e.g., scheduling visits from staff) requested by patients and families may enhance quality of life and perceptions of autonomy and control. the modern hospice movement was founded in part to oppose aggressive treatment at the end of life, yet as hospice agencies grow they become subject to new rules and procedures, and pressures to standardize care and maximize efficiency. as a result, they may eventually come to resemble the medical institutions they initially resisted.46 these institutional structures will also influence the content and form of communication. we are not advocating a return to a grassroots, volunteer model. but in order to maintain the essence of the hospice philosophy, organizational policy and practice should consider resistance as a way to minimize marginalization and open up possibilities for living fully until a patient dies.25 despite an implicit promise in hospice that patients will receive unique individualized care, caseloads, documentation procedures, training, and reimbursement structures encourages staff to streamline care through standardization. we may feel uncomfortable highlighting power inequalities between hospice physicians, nurses, social workers, chaplains, home health aides, and their patients because they have been socialized to engage this healthcare context in the same way as any other. patients and families are also socialized to engage health practitioners in particular ways that reinforce the notion that clinicians are the experts. dying patients are dependent on the members of their team for care and treatment and have to find ways to ensure they will not be abandoned or decertified if their treatment preferences place them outside of standard hospice treatment plans. conclusions these cases illustrate three ways in which patients exercise control and attempt to realize their own subjective visions of quality of life within the hospice system. these narratives of resistance highlighted patients who accepted hospice care but denied the closeness of death, the ways in which uncommon interventions promoted the quality of life of patients who were aware they would die soon, and the importance of remembering how organizational rules and institutional practices sometimes have human costs. these are not the usual kinds of stories told in the literature about patient-physician (and other healthcare professionals) communication at the end of life. the canonical narratives in hospice focus on peaceful, passive dying. an analysis of these cases demonstrates how quality of life is more varied than initially envisioned or practiced, while illustrating ways that more effective communication about patients’ values can uncover the motivations driving patients’ needs and desires. these experiences help bring marginalized experiences into the fold. [page 70] [qualitative research in medicine & healthcare 2017; 1:6152] article no nco mm er cia l u se on ly although patients bring the everyday realities of their social lives (mishler’s23 voice of the lifeworld) into the presentation of their medical problems, these concerns can be difficult to consider in discussions about plans of care at the end of life. patients may appear stubborn or ungrateful if they resist pain medication or require a pacemaker, or may be ashamed if they prefer to watch television instead of composing their life history or seeking closure. we must remain mindful that patient is a constructed social category.23 patients are only partially patients. they are people who once lived outside of the confines of medical care. narratives of resistance remind us that there is always a person on the receiving end whose complexity and fullness may not be captured by usual characterizations and patterns of practice. references 1. national hospice and palliative care organization. what hospice means: learn what hospice care really means to patients and their families. alexandria, va, usa: national hospice and palliative care organization; 2014. available from: http://www.nhpco.org/press-room/press-releases/what-hospice-means 2. clark d. total pain', disciplinary power and the body in the work of cicely saunders, 1958–1967. soc sci med 1999;49:727-36. 3. byock ir, merriman mp. measuring quality of life for patients with terminal illness: the missoula–vitas® quality of life index. j palliat med 1998;12:231-44. 4. centers for medicare and medicaid services. medicare care choices model. baltimore, md, sua: centers for medicare and medicaid services; 2016. available from: https://innovation.cms.gov/initiatives/medicare-care-choices/ 5. emmanuel, ll, alpert, hr, baldwin, dc, emanuel, ej. what terminally ill patients care about: toward a validated construct of patients’ perspectives. j palliat med 2000;3:419-31. 6. johansson cm, axelsson b, danielson e. living with incurable cancer at the end of life—patients’ perceptions on quality of life. cancer nurs 2006;29:391-9. 7. singer pa, martin dk, kelner m. quality end-of-life care: patients’ perspectives. jama 1999;281:163-8. 8. steinhauser ke, christakis na, clipp ec, et al. preparing for the end of life: preferences of patients, families, physicians, and other care providers. j pain symptom manage 2001;22:727-37. 9. steinhauser ke, christakis na, clipp ec, et al. factors considered important at the end of life by patients, family, physicians, and other care providers. jama 2000;284:2476-82. 10. teno jm, casey va, welch lc, edgman-levitan s. patientfocused, family-centered end-of-life medical care: views of the guidelines and bereaved family members. j pain symptom manage 2001;22:738-51. 11. gill tm, feinstein ar. a critical appraisal of the quality of quality-of-life measurements. jama 1994; 272:619-26. 12. schonwetter rs, roscoe la, nwosu m, et al. quality-oflife and symptom control in hospice cancer patients receiving chemotherapy. j palliat med 2006;9:638-45. 13. bochner ap, ellis c, tillmann-healy l. relationships as stories. in: s. duck (ed.) handbook of personal relationships: theory, research, and interventions (2nd ed., pp. 307324). new york, ny: john wiley; 1997. 14. bruner j. acts of meaning. cambridge, ma, usa: harvard university press; 1990. 15. temel js, greer ja, muzikansky a, et al. early palliative care for patients with metastatic non–small-cell lung cancer. new engl j med 2010;363:733-42. 16. connor sr, pyenson b, fitch k, et al. comparing hospice and nonhospice patient survival among patients who die within a three-year window. j pain symptom manage 2007; 33:238-46. 17. stanford university palliative medicine. where do americans die? palo alto, ca, usa: stanford school of medicine; 2017. available from: https://palliative.stanford.edu/home-hospicehome-care-of-the-dying-patient/where-do-americans-die/ 18. ariès p. western attitudes toward death: from the middle ages to the present. baltimore, md, usa: johns hopkins university press; 1974. 19. kübler-ross e. on death and dying. new york, ny: macmillan; 1969. 20. nussbaum jf, giles h, worthington a. communication at the end of life. new york, ny, usa: peter lang publishing; 2015. 21. whitney a. discourse on or about dying: palliative care. in: nussbaum, j. f. giles, h. worthington, a. (eds). communication at the end of life. new york, ny: peter lang publishing; 2015. 22. tullis owen ja. communicating spirituality, dying and a "good death" at the end-of life: the role of hospice interdisciplinary team members. graduate theses and dissertations. university of south florida. available from: http://scholarcommons.usf.edu/etd/56 23. mishler eg. patient stories, narratives of resistance and the ethics of humane care: a la recherche du temps perdu. health (london) 2005;4:431-51. 24. stone-mediatore s. reading across borders: storytelling and knowledges of resistance. new york, ny, usa: palgrave macmillan; 2003. 25. dutta m. communicating health: a culture-centered approach. cambridge: polity; 2008. 26. dillon, pj, roscoe, la. african americans and hospice care: a narrative analysis. narrat inq bioeth 2015;5:151-65. 27. dillon, pj, roscoe, la, jenkins, jj. african americans and decisions about hospice care: implications for health message design. howard journal of communications 2012;23:175-93. 28. tullis, ja. participant observation at the end-of-life: reflecting on tears. health commun 2013;28:206-8. 29. tullis, ja. personhood and communication at the end of life. j med pers 2012;10:103-13. 30. morse jm. confusing categories and themes. qual health res 2008;18:727-28. 31. christakis na. death foretold: prophecy and prognosis in medical care. chicago, il: university of chicago press; 2001. 32. roscoe la, tullis ja, reich rr, mccaffrey jc. beyond good intentions and patient perceptions: competing definitions of effective communication in head and neck cancer care at the end of life. health commun 2013;28:183-92. 33. quill, te. initiating end-of-life discussions with seriously ill patients: addressing the “elephant in the room.” jama 2000;284:2502-7. 34. ellis c. beyond measure: the role of stories, conversations, [qualitative research in medicine & healthcare 2017; 1:6152] [page 71] article no nco mm er cia l u se on ly and personal narratives in quality of life research. j med pers 2008;6:104-12. 35. bochner ap. vulnerable medicine. j appl commun res 2009;37:159-66. 36. teno jm, plotzke m, gozalo p, mor v. a national study of live discharges from hospice. j palliative med 2014;17:1121-7. 37. dillon pj, basu a. african americans and hospice care: a culture-centered exploration of enrollment disparities. health commun 2016;11:1385-94. 38. dillon pj, roscoe la. african americans and hospice care: a narrative analysis. narrative inquiry bioethics 2015;5:151-65. 39. zellner ra, aulisio mp, lewis wr. should implantable cardioverter-defibrillators and permanent pacemakers in patients with terminal illness be deactivated? circ arrhythm electrophysiol 2009;2:340-4. 40. sulmasy dp. within you/without you: biotechnology, ontology, and ethics. j gen intern med 2008;23(suppl.1):69-72. 41. kay gn, bittner gt. deactivating implantable cardioverterdefibrillators and permanent pacemakers: an ethical distinction. circ arrhythm electrophysiol 2009;2:336-39. 42. kapa s, mueller ps, hayes dl, asirvatham sj. perspectives on withdrawing pacemaker and implantable cardioverterdefibrillator therapies at the end of life: results of a survey of medical and legal professionals and patients. mayo clin pro 2010;85:981-90. 43. morganweck cj. ethical considerations for discontinuing pacemakers and automatic implantable cardiac defibrillators at the end-of-life. curr opin anaesthesiol 201;26:171-5. 44. medicare program; fy 2017 hospice wage index and payment rate update and hospice centers for medicaid and medicare services department of health and human services. 5 aug 2016 available from: http://federalregister. gov/a/2016-18221 45. stevenson d, huskamp h. hospice payment reforms are a modest step forward, but more changes are needed. 2016. available from: http://healthaffairs.org/blog/2016/01/04/hospice-payment-reforms-are-a-modest-step-forward-but-morechanges-are-needed/ 46. ahrne g. agency and organization: towards an organizational theory of society. thousand oaks, ca: sage; 1990. [page 72] [qualitative research in medicine & healthcare 2017; 1:6152] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2021; 5:9690] [page 17] introduction every epidemic may involve vexing ethical issues. qualitative research, based on narrative, may guide the provider to afford these issues in a multidimensional context for the satisfaction of all people involved. in this article we present the case of a minority woman who contracted coronavirus while immune-depressed. her situation was hopeless since the beginning but her health care surrogate was reluctant to withdraw the life supporting system. his religious beliefs led him to consider such decision equivalent to murder. a thorough and attentive analysis of his and the patient’s creed, and the intervention of other family members allowed him to accept supportive care as the most compassionate form of management of his spouse. this case presents two novel elements with respect to the epidemics of the distant past, such as the asian influenza of the fifties: the infection of an immune depressed patient and the availability of cardiopulmonary support. at that time the discussion of advanced directives would have been moot. as well, paying attention to the patient’s culture is relatively new to medical care. in addition, through our narrative we have been able to dissect some of the personal concerns underlying acceptance of dnr (do not resuscitate) orders while all the authors participated in the management and the analysis of the case the narrative will be provided by the first author, to comply with the editorial requests of the journal. case report i was consulted for the management of a 42-years-old hispanic female with a history of acute myeloid leukemia (aml) admitted to our institution in summer of 2020. aml is an often incurable disease of the blood. three month earlier the patient had undergone an allogeneic bone marrow transplant (bmt) that appeared as covid-19 pandemic causing medical and public health ethical dilemmas: a case report and review of literature jarelys hernandez,1 barbara lubrano di ciccone,2,3 sarah thirlwell,4 margaret booth-jones,2,3 sadaf aslam,1 john greene1 1department of internal medicine, division of infectious diseases and international medicine; 2department of internal medicine, division of hospice and palliative medicine, university of south florida, morsani college of medicine, tampa; 3department of supportive care medicine, division of behavioral medicine; 4department of supportive care medicine, division of palliative medicine, h. lee moffitt cancer center and research institute, tampa, florida, usa abstract the covid-19 pandemic presented myriad of unprecedented and daunting ethical dilemmas to healthcare workers, patients, their families, and the public health. here we present a case of a 42-years-old hispanic female with underlying hematological malignancy that developed severe sars-cov-2 infection amidst the pandemic. this case illustrates some remarkable ethical dilemmas during pandemic times, including the lack of advanced directive planning, the repercussions of restricting family visits, and what ethics in crisis and moral injury entails. identifying the ethical challenges emerging from the pandemic will assist physicians and other providers in making proper decisions and maintaining the best standard of care. correspondence: john greene, university of south florida, morsani college of medicine, 12902 usf magnolia drive, 33612 tampa, fl, usa e-mail: john.greene@moffitt.org key words: covid-19; sars-cov-2; ethics; end of life; pandemic. conflict of interest: the authors declare no conflict of interest. availability of data and materials: all data underlying the findings are fully available. ethics approval and consent to participate: no ethical committee approval was required for this case report by the department, because this article does not contain any studies with human participants or animals. informed consent was obtained from the patient included in this study. consent for publication: the patient gave her written consent to use her personal data for the publication of this case report and any accompanying images. received for publication: 1 october 2020. accepted for publication: 24 november 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2021 licensee pagepress, italy qualitative research in medicine & healthcare 2021; 5:9690 doi:10.4081/qrmh.2021.9690 qualitative research in medicine & healthcare 2021; volume 5:9690 no nco mm er cia l u se on ly the only potential cure. though the leukemia had not relapsed, the patient had become more vulnerable to viral infections. to prevent the rejection and to facilitate the engraftment of the new bone marrow the patient needed to take a number of medications that suppressed her immune system. on admission the patient was febrile, confused and short of breath. she was found to be positive by polymerase chain reaction (pcr) testing to have severe acute respiratory syndrome coronavirus 2 (sars-cov-2) caused by the novel coronavirus disease of 2019 (covid-19). the covid-19 infection produced groundglass pneumonia involving both lungs. soon the patient developed acute respiratory distress syndrome (ards), a condition that prevents adequate oxygenation of the blood, and distributive shock, meaning that her blood pressure was too low to maintain adequate blood flow to her vital organs, such as the brain, the heart and the kidneys. to survive, she required mechanical ventilation and administration of drugs to increase her blood pressure. she also needed intravenous fluids and a feeding tube. on admission the patient had anemia and profound leukopenia which means a critical drop in the count of white cells with the function of fighting infection. this finding was due to the drug used to prevent the transplant rejection. her hospital stay was complicated by the development of bilateral accumulation of air around her lungs (pneumothorax) that needed decompression with pigtail catheter placement to facilitate her respiratory function already compromised by her pneumonia. her state of confusion kept worsening and by hospital day 4 she became unable to speak. extensive workup of her neurological status failed to reveal any abnormality in the brain or the cerebrospinal fluid. presumably her symptoms were due to the infection. ct of the abdomen revealed colitis and anti-toxin pcr stool testing was positive for clostridium difficile an infection common in immune-suppressed individuals. additionally, she was found to have reactivation herpes simplex virus-2 (hsv-2) infection around her rectum and genital area. at the time of hospitalization, visitors were not permitted due to the covid-19 pandemic and communication with her family occurred via telephone or video conference. the patient received the treatment available at the time for covid-19 that included tocilizumab and remdesivir on hospital day 4, dexamethasone on day 5, and convalescent plasma transfusion on day 12 without clinical benefit. her respiratory failure had worsened and she accumulated air around the heart (pneumopericardium) that impeded adequate filling of the heart. only a surgical intervention would have allowed the removal of the air, but surgery was considered contraindicated by the patient’s general condition. at the meantime the patient was seen struggling with the ventilator with teary eyes. clearly the life-supporting system was causing a lot of distress and discomfort. to me and to the other health professionals involved it was clear that every hope to improve the patient’s condition had waned, the life supporting system was inflicting unnecessary pain on the patient. the time had come to detach the patient from the ventilator and establish palliative sedation.1 this form of treatment allows a patient in respiratory failure to pass peacefully without the so called “air hunger” one of the most disturbing symptoms of near death. there was an impediment to palliative sedation. the patient had always refused to issue advanced directives for end of life care in at least five occasions and at the moment she was not competent to decide. her health care surrogate by default was her spouse. he was contacted by phone by me and members of the intensive care team. he spoke a good english, albeit with an accent, and seemed to understand our consensus that any additional attempt to support his wife’s life would have been not just futile, but also cruel. yet he did not feel like to consent to the discontinuance of the ventilator and to palliative sedation. two major themes emerged from our discussion with him “ my wife is a christian and i am a christian,” he stated “and we believe it is wrong to hasten a person’s death. every sunday our congregation prays for carmen’s health. it would not make any sense to ask for a miracle and to let her die at the same time.” “we went through so much during the past eighteen months,” he added, “carmen spent more time in the hospital than at home. when the doctor told us that her leukemia might be incurable we made a commitment to prove her wrong. we even went through a bone marrow transplant. she survived leukemia! should she die of the flu when most people go through it untouched?” he broke out in tears. somehow he felt cheated by the system. was it possible that the same doctors able to cure aml should be defeated by a disease that did not seem worse than common flu? we realized there was no much use to continue this discussion, but that it might have been wise to let the social worker explore the family situation. we learned that the patient and her husband attended a non denominational christian church whose pastor was a strong pro-life proponent. carmen’s parents had migrated to the us from central america. though they had been born catholic they found more convenient to join this church, where carmen met her husband, an immigrant from peru. this was a second marriage for carmen. apparently her first husband got killed in a car accident, though there has been some talk that he had been a victim of the drug cartel. she had been left with two children in her teens that her second husband had been happy to adopt. the present husband had had problems with alcohol and had joined the church to overcome his addiction through prayer and spiritual practices. by undertaking the responsibility of supporting carmen and her children he found a strong enough motivation to become productive and stay. two years ago he and carmen had acquired the franchise of a convenience store. he had believed that [page 18] [qualitative research in medicine & healthcare 2021; 5:9690] article no nco mm er cia l u se on ly carmen was a personal gift from god and could not accept the idea that god could take her away from him so soon. last but not least he was concerned about the children (20-year-old son and 17-year-old daughter). how could they survive without being able to say the last goodbye to their mother? would have they blamed him for their mother death? the ethics committee was asked to review the case and considered the clinicians’ ethical concerns guided by the four box method to review the medical indications, patient’s preferences, quality of life wishes, and contextual issues.2 the probability of recovery was deemed to be highly improbable by all the clinicians involved in her care. further aggressive or heroic measures were considered to be futile with the risk of harm outweighing any benefits. unfortunately, there was a lack of living will, or other advance directives, to provide information on patient’s preferences and assist in the end of life discussions. it was discussed that she was only alive due to aggressive life support measures and was suffering with no quality of life. the members of the medical ethics team concurred with our reluctance to release a declaration of medical futility, that would have allowed us to discontinue the respiratory support without the spouse’s consent. this approach might have engendered a painful confrontation with the family. right or wrong, the perception that every effort had not been done to save carmen’s life might have disallowed husband, parents and children to come to term with her death. we ought not to load the family with guilt and resentment. finally, a decision was made to continue current intensive care measures without escalation of care in order to give her husband and children an opportunity to visit and provide support at the bedside. administrative approval was requested and obtained subsequently to permit her children, spouse and parents to be at bedside in the context of limited visitation policy due to covid-19 pandemic. this exception to the rule proved beneficial. the family had the opportunity to say goodbye to carmen. they also saw her crucified to the bed by the ventilator, the needles and the tubes in the futile attempt to keep her breathing. “what for this ongoing torture? carmen is gone forever and she won’t come back to us,” uttered her father drowned by tears. prior to the visit the father had been one of the staunchest supporters of indefinite continuation of life support. the daughter walked out of the intensive care crying and sobbing: “i don’t want to see my mom like this” which might be interpreted as “what have you done to my mother!” i believe this was the turning point. we were not talking anymore about a person whose survival was trusted to our ethical whims. we were talking about the beloved mother, spouse, and daughter who was suffering for no good reasons at the hand of her caregivers as directed by the family, that was ultimately responsible of her enduring pain. in my experience, people who love a patient may recognize better than any health care professional when the condition has become irreversible if given an opportunity to visit the patient. the covid pandemic has hindered many end of life decisions because the family members did not have the opportunity to visit in person the dying beloved. as important the visit gave us the opportunity to hold a face to face meeting instead of communicating at a distance. the family could appreciate the non-verbal message of the caregivers, and to realize they were united beyond any doubt in deeming the situation of carmen irreversible, and they were moved by compassion and by the ethical imperative of doing no harm in recommending palliative sedation. i found the comments of the critical care specialist particularly effective as he said: “please remember that you don’t cause carmen’s death by discontinuing the ventilator. covid-19 is the incurable disease that causes her death. true, most people survive the covid infection, but the situation of carmen is special, because the cure of her leukemia also lowered her ability to fight infections. most people survive a bee sting without any problem, but one person in ten thousand dies of a bee sting because of allergy. with respect to covid carmen is that one person in ten thousand.” with these few direct and simple words he absolved the family of any responsibility in the death of carmen and reassured them that she had received all available care. in a particularly touching moment the children hugged the distraught husband and among tears they comforted him “dad, we will be here for you with the same love mother had for you. you won’t be alone.” after the meeting the family agreed without further objection to dnr (do not resuscitate) and extubating orders and carmen and carmen expired peacefully 12 hours later. discussion this case gives us the opportunity to discuss the lack of advanced care planning, ethical dilemmas related to covid-19, and ethics in crises and moral injury. but before affording these specific issues we would like to highlight what we learned throughout our narrative. the husband and the rest of the family were adamant at the beginning in refusing the dnr order. their attitude changed given the opportunity to visit the patient and to embrace with their heart the fact that life support represented only unnecessarily prolonged torture of their beloved spouse, mother, and daughter. of course the anticipation of the husband’s objection by the critical care specialist and the outburst of the filial love by carmen’s children that adopted their stepfather as their natural father supported the spouse in making this difficult decision. classical ethical or sociological research would have just stated that black and latinx patients are less likely to [qualitative research in medicine & healthcare 2021; 5:9690] [page 19] medicine at the end of the world no nco mm er cia l u se on ly issue advanced care directions than the arian ones, and that religious scruples and mistrust of the system underlie the reluctance to accept a dnr order. while these aspects might have played a role in our case the strongest determinant was undoubtedly the fear of the husband to lose with his wife the strongest support in his fight with addiction as well as the first affection he could have really trusted. and perhaps there was a certain degree of anger toward the divinity that was taking her away so untimely. in describing the reactions of the family members to the struggle of carmen with the ventilator i highlighted how distant discussions are not substitution to the direct experience of dying, and that a face to face meeting had confirmed through non verbal signs the good intentions of the caregivers. last but not least the description of the case emphasized the need to observe each person primarily as a person rather than as member of a certain ethnic or cultural group. this lesson is particularly relevant to a society that is becoming more and more diverse. the ever-existent lack of advanced directives planning it is well documented that minority populations have a lower rate of formal advance directives, either in the form of a living will or an advance care plan (acp). one factor is the identification of a more optimistic religious belief system and subsequent hopefulness that there will be a divine intervention for their loved ones. there is evidence in the literature that minority populations express a preference for more life prolonging interventions than the arian population. latinx are less likely to sign a dnr or allow transition to comfort measures than nonlatinx.3 shen et al. found that when discussing acp, latinx preferred family involvement, acknowledgement of the religious beliefs, and a culturally competent approach with understanding of their values.4 in our case, due to the visitor restrictions, communication was limited to telephone and most frequently only involved the husband, though her father and children were known to be actively involved in our patient’s care. ethical dilemmas while caring for covid-19 patients with surgical needs and at the end of life surgical procedures on covid-19 patients carry high mortality,5 and providers must educate and empower patients or their substitute decision-makers to make appropriate informed decisions regarding their care, including surgical interventions and other procedures.5 compassion and transparency are urged, particularly at the end of life,6,7 in order to avoid distrust between the patient-physician relations.8 by the same token, avoiding futile interventions and alleviating suffering is an ethical imperative.9 doctors are under no obligation to offer treatment they consider futile.5 moreover, withholding or withdrawing of life sustaining interventions is medically appropriate course of action when interventions are deemed futile.7 also, when surgical interventions yield similar results as non-operative treatment, the path of decreased resource utilization should be embraced.8 the restriction of visitors by the family represents also an ethical issue as our case clearly indicated. as our institution activated its emergency response plan during the covid-19 pandemic, our resources and number of cases permitted us to maintain emergency management level 1 in which conditions were serious but there was limited impact on clinical operations. however, in recognition of the growing risk of community spread and to address concerns such as providing personal protective equipment (ppe) to visitors could result in diversion of resources,9,10 conditions required departure from patient-and-family-centered care practices. due to the pandemic, administrative decisions to restrict the presence of non-essential persons were made, halting family visitation and direct participation in patient care whereas clinical teams and support staff retained their commitment to update family members regarding their loved ones’ status and treatment plans. the negative consequences related to visitor restrictions are extensive. first, the clinician’s personal thoughts and emotions that arise during care allow them to provide ongoing ethical care for patients and families.11 visitor restrictions also impair communication and the bereavement process of the family. as death occurs, the physical, mental and social consequences of physical distancing may impact the potential for complicated grief.11 over the last decade, research has shown that post-icu syndrome in family members (pics-f) is a cause of major concern. the major risk factors for pics-f are poor communication with the icu team, being in a decision-making role, education level, and having a loved one who died or was close to death. indeed, many studies have shown that communication with caregivers is one of the most highly valued aspects of care that impacts family members’ experience during and after the patient’s stay, including the aftermath of the patient’s death. communication perceived as inconsistent, unsatisfactory or uncomforting is associated with higher risk of post-icu burden.12 there is an increase in the rate of post-traumatic stress disorder (ptsd) in family members who did not get to say goodbye to their loved ones, further adding to complicated grieving.3 additionally, these restrictions interfere with the rights of the patient to have family present with them for emotional support and participate in care planning during hospitalization. visitors play a role in ensuring public scrutiny of standards of care and visitors may act as patient advocates particularly when incapacitated.10 in this case, considering the inability for the family members at the bedside, clinicians engaged the family via telephone or video conferencing to participate in care decisions. however, these efforts did not match the direct experience of being present. the challenges that exist dur[page 20] [qualitative research in medicine & healthcare 2021; 5:9690] article no nco mm er cia l u se on ly ing in-person communication could be further accentuated via audio or video conferencing. specifically, in care of patients with advanced cancer, it is known that discordance exists between actual prognosis and prognostic awareness.13 ethics in crisis and moral injury in ideal conditions, when there is no restriction of resources and providers, medical care should be based on four ethical principles: autonomy, beneficence, non maleficence, and justice. according to autonomy the patient or his/her surrogate is the final arbiter in all medical decisions. beneficence means that any medical intervention should be beneficial to the patient and non maleficence that the risk of treatment complications should be lower than the probability of benefits. justice implies that there should be no discrimination based on race, sex, age, religion, or sexual preference in assigning a specific treatment. patient care delivery during a pandemic may require a re-defined crisis standard of care. when the demand for resources or providers overwhelms the availability it may become necessary to establish criteria to ration care. these criteria may require reserving life-saving treatment to the individuals who most may benefit from it and to those who are more beneficial to the society such as health care providers and first responders. thus the principles of justice and beneficence may be at odds with that of autonomy and utilitarian ethics may take precedence over individual ethics.5,7,12 to honor the principle of beneficence, providers should try to relieve suffering to the best of their ability despite the intrinsic challenges of a crisis.5 most importantly though, clinicians should resist the tendency to anticipate level 4 crisis operations when still in level 2-3 contingency operations in order to prevent inappropriate denial of care.7 level 4 clinic operation mandates rationing of life-saving care. during crisis levels, intensive care unit (icu) selection criteria are modified with patients more frequently considered mainly for palliative comfort care with the shortage of icu beds and equipment.8,12 ethical questions about the need for prioritization of treatment, ppe availability, testing, and resuscitation decisions arise.14 classically, prediction of number of years to live (the use of quality-adjusted life years) is posited as the priority selection criteria.6,12,14 the risk of “sacrificing the most vulnerable patients” can result in moral injury.12 similarly, the criteria to allocate scarce lifesaving resources like ventilators and dialysis machines may make elderly adults, people from minority communities, or people with disabilities more vulnerable.14 there is a distress in public health ethics; as we focus on saving as many lives as possible, we are inadvertently perpetuating disparities as good health is not equally distributed in the society.8 while the greater good may be prioritized during a pandemic, patient autonomy should be respected to the extent possible and clinicians should engage in advance care planning including preemptive “what if” conversations.15 furthermore, clarification of preferences for cardiopulmonary resuscitation and other life-prolonging therapies are essential so that patient preferences can be incorporated fully into decision-making regarding allocation of scarce resources.16 psychological effects on providers and the general population should be a concern. with patients dying mainly due to respiratory distress, and others losing human connectivity, there is rapid change and financial burden with little time to adjust.9,14 in addition, reduced physical activity due to risk of infection compromises the patient’s health and immunity.17 those who are quarantined may experience depression, fear, guilt and anger, and those who are infected may experience anxiety, depression, guilt, stigma and anger as well.17 fortunately we did not face a level 4 crisis management, but the discussion is pertinent to our case. in case of rationing our patient might have been excluded from life supporting treatment based on the diagnosis of aml that is associated with a decreased life expectancy and her condition of immune-suppression that made her particularly vulnerable to covid-19 conclusions this case highlights the complexity of ethical concerns surrounding the care of sars-cov-2 infected patients. in the case herein, health care team ensured that the care decisions were focused on the overall clinical status of the patient and were based on the principles of non-maleficence; not driven by patient covid-19 status or fears of it. despite inherent limitations related to the pandemic, communication and transparency were maintained. without a doubt, the pandemic presented a number of unprecedented challenging ethical issues. a formal crisis standard of care is needed14 including guidelines to allocate scarce resources in order to minimize or eliminate clinicians feelings that they are violating their moral beliefs.8 however, when there is minimal impact on resources, it is important to maintain usual operations in the care of patients with covid-19 and engage more thoughtfully in advance care planning. identifying the ethical challenges emerging from the pandemic will assist physicians and other providers in making proper decisions and maintaining the best standard of care.14 importantly, mental health support strategies are warranted for infected patients and their relatives, uninfected quarantined individuals, and practicing healthcare workers. our case demonstrates that qualitative research based on narrative may help us identify and appreciate the human elements of end of care decisions and may help shift the focus to the patient and the family from the particular ethnic and cultural group to which the patient may belong. [qualitative research in medicine & healthcare 2021; 5:9690] [page 21] medicine at the end of the world no nco mm er cia l u se on ly references 1. maltoni m, scarpi e, rosati m, et al. palliative sedation in end-of-life care and survival: a systematic review. j clin oncol 2012;30:1378-83. 2. jonsen ar, siegler m, winslade wj. clinical ethics: a practical approach to ethical decisions in clinical medicine. 8th edition ed. new york, ny: mcgraw-hills; 2015. 3. gesi c, carmassi c, cerveri g, et al. complicated grief: what to expect after the coronavirus pandemic. front psychiatry 2020;11:489. 4. shen mj, gonzalez c, leach b, et al. an examination of latino advanced cancer patients’ and their informal caregivers’ preferences for communication about advance care planning: a qualitative study. palliat support care 2020;18:277-284. 5. harkin dw. ethics for surgeons during the covid-19 pandemic, review article. ann med surg (lond) 2020;55:316-9. 6. chew c, ko d. medical ethics in the era of covid-19: now and the future. respirology 2020;25:1033-34. 7. kirkpatrick jn, hull sc, fedson s, mullen b, goodlin sj. scarce-resource allocation and patient triage during the covid-19 pandemic: jacc review topic of the week. j am coll cardiol 2020;76:85-92. 8. dunham am, rieder tn, humbyrd cj. a bioethical perspective for navigating moral dilemmas amidst the covid-19 pandemic. j am acad orthop surg 2020;28:471-6. 9. rosa we, davidson pm. coronavirus disease 2019 (covid19): strengthening our resolve to achieve universal palliative care. int nurs rev 2020;67:160-3. 10. coghlan n, archard d, sipanoun p, et al. covid-19: legal implications for critical care. anaesthesia 2020;75: 1517-28. 11. wallace cl, wladkowski sp, gibson a, white p. grief during the covid-19 pandemic: considerations for palliative care providers. j pain symptom manage 2020;60:e70-6. 12. robert r, kentish-barnes n, boyer a, et al. ethical dilemmas due to the covid-19 pandemic. ann intensive care 2020;10:84. 13. mone s, kerr h. prognostic awareness in advanced cancer: an integrative literature review. bmj support palliat care 2020; bmjspcare-2020-002287. online ahead of print. 14. chamsi-pasha h, chamsi-pasha m, albar ma. ethical dilemmas in the era of covid-19. avicenna j med 2020;10:102-5. 15. offodile ac, ii, aloia t. oncology clinical transformation in response to the covid-19 pandemic. jama health forum with jama surg 2018;53:605-6. 16. curtis jr, kross ek, stapleton rd. the importance of addressing advance care planning and decisions about donot-resuscitate orders during novel coronavirus 2019 (covid-19). jama 2020;323:1771-2. 17. kim sw, su kp. using psychoneuroimmunity against covid-19. brain behav immun 2020;87:4-5. [page 22] [qualitative research in medicine & healthcare 2021; 5:9690] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2018; 2:7646] [page 65] introduction ask your doctor about…is a phrase immediately recognizable as synonymous with a direct-to-consumer (dtc) advertisement, signifying to media consumers that a better life is within reach if a prescription can be obtained. although the pharmaceutical industry continues to claim that its broadcast advertisements serve as a form of health education for consumers, research has shown that these commercials seek to persuade consumers above providing informational value.1 with the prescription drug market now offering what seems like limitless options to consumers, and competing drugs entering the game, it has become more important than ever that pharmaceutical giants spend money on advertising their products. it also becomes important, however, to investigate the ways in which drugs are being commodified in an effort to further understand a patient’s journey when deciding to ask their health care provider for a drug by name. the u.s. department of health and human services estimates that expenditures on prescription drugs will continue to increase at a faster rate than national health spending. in 2016, 16.7% of u.s. health care spending went toward prescription drugs, equating to $457 billion.2 on the whole, the advertising industry is decreasing its ad expenditures, yet big pharma has increased its budget to obtain more customers. pharmaceutical companies spent $5.2 billion on advertising alone in 2015, a substantial 19% increase from ad spending in 2014.3 broadcast ads have seen budgets increase more than 10% since 2011, causing an increase in the amount of ads to which viewers are exposed.3 advertising culture, combined with pharmaceutical the introduction of the medicinal partner in direct-to-consumer advertising: viagra’s contribution to pharmaceutical fetishism and patient-as-consumer discourse in healthcare janelle applequist zimmerman school of advertising & mass communications, university of south florida, tampa, fl, usa abstract pfizer, manufacturer of the erectile dysfunction prescription treatment viagra, has been a staple in the pharmaceutical advertising arena since broadcast versions of such ads became legally permissible in the united states in 1997. given that the patent for viagra is soon set to expire, it is important that research take a look back in an attempt to contextualize the brand’s place in shaping medicinal marketing culture. of particular interest is the period beginning in 2014, when viagra’s most unconventional campaign yet began using a tactic that was the first of its kind for the pharmaceutical industry. by removing the actual consumer of the medication from these ads (males), viagra has paved the way for pharmaceutical advertising to target the medicinal partner. this manuscript reviews the first use of the medicinal partner in the pharmaceutical advertising sector, conducting a textual analysis of viagra’s use of this mediated relationship. the medicinal partner is the pharmaceutical industry’s attempt to target a patient’s social circle in an effort to promote a discourse that suggests a medicinal remedy for a problem. this analysis describes how social meaning and relationships underlie the market transaction of obtaining a prescription, as has been previously established through the processes of medicalization and pharmaceutical fetishism. these advertisements create belief in the larger sense, meaning pfizer is infiltrating upon the patient’s process of choice and consumption of medicinal remedies. viagra is simultaneously encouraging male consumers to celebrate the brand while using female ambassadors to influence the decision to request medicinal intervention. correspondence: janelle applequist, zimmerman school of advertising & mass communications, university of south florida, 4202 e. fowler ave. cis 1040, tampa, fl 33620, usa. tel.: 724.816.8840. e-mail: applequist@usf.edu key words: direct-to-consumer advertising; medicinal partner; pharmaceutical advertising; textual analysis; viagra. conflict of interest: the author declares no potential conflict of interest. funding: this work was supported, in part, by the university of south florida research & innovation internal awards program under grant no. 0115756. the content is solely the responsibility of the author and does not necessarily represent the official views of the university of south florida. received for publication: 19 june 2018. revision received: 2 august 2018. accepted for publication: 3 august 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright j. applequist, 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:65-72 doi:10.4081/qrmh.2018.7646 qualitative research in medicine & healthcare 2018; volume 2:65-72 no nco mm er cia l u se on ly marketing, has created the ubiquitousness of dtc ads on television, but the evolution of this genre has created another category of consumer – the medicinal partner. this study introduces the concept of the medicinal partner’s use in pharmaceutical advertising. the medicinal partner is the pharmaceutical industry’s most recent attempt to increase sales, focusing on a patient’s social circle to promote discourse that suggests a medicinal remedy for a problem. to date, viagra has been the first pharmaceutical drug marketed using this tactic. the medicinal partner can then be defined as an individual in close social proximity to the consumer being targeted. this individual provides a role in a consumer’s life that has influence and meaning for decision-making. to this end, viagra serves as a reinvention of the standard pharmaceutical advertising formula, one that now adds a medicinal partner to the limited perceptions of health existent in the texts the industry promotes. viagra and its use of the medicinal partner merits analysis because it is the first pharmaceutical brand known to employ such a tactic in the dtc advertising realm. while the social other (e.g. romantic partners, friends, family members, influential peer groups, etc.) comprises a category often used in advertising for other product categories, the use of this group in the pharmaceutical sector presents an important area for analysis, as prescription drugs carry significantly more risk than other items being sold by advertisers. medicalization, pharmaceuticalization, and pharmaceutical fetishism while sociological critiques regarding the influence of media systems have been documented,4 there is more research to be done concerning the more specific domain of health and medicinal remedies. in 1994, deborah lupton published a seminal piece in health communication arguing for more critical health communication research, drawing attention to the relationship between power and control in forming ideologically-accepted notions of health problems and solutions in society. a main tenant of this argument included the necessity of patients having more active and equal roles in dyadic encounters with their physicians, eliminating the hierarchical structure of medicinal encounters.5 while necessary and commendable in its form, lupton’s argument focused on the interpersonal forms of communication, emphasizing the discourse used in medical settings, often to show the ways in which the social concerns of patients related to their health status are repeatedly marginalized and ignored by practitioners.6 still, further consideration should be given for an emphasis on mediated forms of sociological influence (i.e. advertisements) to show how such forms of communication influence sociological constructions of what it means to be healthy or ill, and even at times, to be happy or sad. health promotion efforts inevitably influence the ways in which various publics know of and understand various health ailments and treatment options. the mass media serve as agents of modernization, exposing individuals to health information, ways of living, and linear models of proposed action seen throughout various health campaigns that are aimed at behavior change.7 it is important that the fields of communication and mass communications investigate media-based efforts to influence health care, as the mass media are themselves tools of modernization built on capitalist ideology, which inherently introduce new risks to audiences.8 for example, the addition of pharmaceuticals to the health care marketplace offers solutions for individuals in that their health ailments may be lessened or more easily managed, however, this introduction inevitably creates a space whereby patients have the potential to suffer side effects associated with pharmaceuticals, possibly having a potentially negative impact. scholarship must acknowledge the ways in which knowledge production intersects with power, ideology, and hegemony within the realm of health advertising.8,9 advertising is a media system that influences sociological meaning and collective understanding of various issues.10 advertisements tap into not necessarily what people need, but what they dream about – channeling emotions, experiences, and images that reflect our deepest desires in a way that, for a moment, makes us feel as if we really can have it all. advertising for products related to health, then, serves as a fundamental commodity-image system where particular visions of what would provide sources of satisfaction become measuring sticks for our success as psychological, social, and physical beings.10,11 relevant to the discussion of advertising’s influence on sociological conceptions of health, medicalization is the process whereby something is made or turned into a medical matter.12 pharmaceuticalization, then, is the process whereby prescription drugs gain and maintain a significant presence throughout society.13 research has relied upon the term to indicate society’s over-reliance on prescription drugs. pharmaceuticalization also refers to the blurring of the boundaries between what is medical treatment versus enhancement, transforming human problems into medicinally-appropriate issues.14 therefore, medicalization creates what we in society understand as an illness or ailment, and pharmaceuticalization offers a prescription drug as the best option for treatment. the final step in the process is defined as pharmaceutical fetishism. pharmaceutical fetishism is a theoretical lens describing the celebratory process of a medicinal remedy as the ultimate option for better health, often at the expense of ignoring other treatment options or lifestyle changes, aligned with romanticized portrayals of the better life one will have as a result of receiving a prescription drug. the process of pharmaceutical fetishism can be described as: the commodification of brand-name pharmaceutical drugs, which, via advertising and promotional cultures, ignore large-scale production and for-profit motives of big pharma while simultaneously reiterating a brand discourse [page 66] [qualitative research in medicine & healthcare 2018; 2:7646] article no nco mm er cia l u se on ly that offers individuals additionally constructed meanings that promote medicine as a cultural authority in health care and prescription drugs as having the capacity to solve individual problems beyond those for which a medicine is scientifically intended.10 pharmaceutical fetishism most often occurs via advertising, with prescription drug commercials featuring patient scenarios with positive emotional appeals, often emphasizing better romantic relationships, more cohesive and happy family units, more fulfilling friendships, and increased wealth in addition to having better health.1 a closer look at the introduction of viagra to the pharmaceutical marketplace helps to deconstruct the process of pharmaceutical fetishism and the broader processes of social structure, thereby allowing for a more detailed looked at the major themes present in viagra’s most recent advertisements. materials and methods this research utilizes textual analysis to review viagra’s most recent stream of advertisements. this method, alongside the aforementioned historical journey of the brand to provide further context, provides a holistic analysis of the drug’s advertisements over time, leading up to the deconstruction of its most recent campaign to decode its contextual meanings. reliant upon gitlin’s interpretation of textual analysis, this study emphasizes how format, setting, character type, and solution are presented in ways that help in identifying embedded hegemonic processes focused on masculinity, femininity, and consumption.15 older ads associated with viagra and its advertising history were collected from available online resources (e.g. youtube, ispottv, etc.), with a total of 15 ads downloaded and analyzed for themes indicative of the brand’s creative shift over time. the most recent viagra campaign constructing the bulk of this analysis was collected via snapstream software, a television recording program that allows for the search of specific content recorded via transcriptions available. this portion of data collection was conducted for a 12-week period, equating to 90 days of programming across the four major broadcast networks (abc, cbs, nbc, and fox) during primetime viewing hours. in total, 8 different ad versions for viagra were featured during this recording period, accounting for a total of 72 times that a viagra ad aired across the four networks during the 12week collection period. following stern’s framework for conducting a textual analysis, this study systematically analyzed the ads by identifying textual elements, investigating the construction of provisional meaning embedded in texts, and subsequently deconstructed sociological meaning.16 an analysis of major themes present in the older ads is also presented in chronological order to describe viagra’s shift in image over time, whereas the analysis of the medicinal partner being used in more recent campaigns is presented via a more detailed deconstruction. finally, a textual analysis of the newest stream of viagra ads shows the ways in which the drug’s marketing strategy has shifted to include a new (and much more profitable) demographic. by relying upon a grounded theory approach in identifying major themes present in each ad, this research utilized a constant-comparative method in analysis to determine primary themes being conveyed by these texts. the manufacturer now focuses on targeting a consumer other than the individual taking the medication. the focus on the medicinal partner merits analysis, as the pharmaceutical industry’s advertising tactic may be blurring the boundaries of bodily authority, moving toward a model that could permit another (e.g. the sexual partner) to have increased influence over the decision one makes about their own body. a textual analysis of these latest ads shows how themes centered on a faux source of female-empowerment is repositioning the brand. results and discussion viagra’s advertising evolution erectile dysfunction (ed) can affect men under the age of 40, but occurs at higher rates for aging populations, with rates increasing in correlation with one’s age (e.g. 40% of men in their 40s, 50% of men in their 50s, etc.).17 the aging population serves as the demographic most susceptible to developing ed. couple this with the fact that more than half of all broadcast television viewers are 54 and older, and it is clear that pfizer has had a recipe for a lucrative combination since its creation.18 the story of viagra is itself a tale of pharmaceuticalization, as a 1992 conference officially renamed impotence, a psychogenic problem, to the slang term of ed, a biogenic ailment.19 it was not until viagra’s marketing launch that erectile dysfunction became referred to as ed, promoting a type of cultural slang to signify the topic of impotence in a way that made it seem more approachable to the public.20 first approved by the food and drug administration (fda) in the united states in march 1998, viagra was marketed primarily to older men for ed associated with prostate cancer, diabetes, and other medical conditions. beginning its first marketing campaign with senator bob dole as a spokesman was fitting, as pfizer initially wanted to rename impotence to ed in social circles, focusing first on the most common demographic associated with the term, aging men.20 it soon became apparent, however, that an aging population coupled with larger sociological concerns of sexual performance led for a much broader audience. viagra became known not only as the remedy for ed, the medicalized term, but as a product that could help those not even experiencing ed. the pill became associated with something that could give men that extra edge in the bedroom.20 the recreational use of viagra permitted pfizer to begin marketing the drug as something capable of addressing male insecurities for [qualitative research in medicine & healthcare 2018; 2:7646] [page 67] article no nco mm er cia l u se on ly recreational purposes without having to directly connect men with impotence – the implication here being that viagra wasn’t treating a problem, but rather, it was enhancing a man’s ability to endure, perform, and be powerful. viagra wasn’t there to fix a broken man, but rather, acted as a tool to help men be better versions of themselves. pfizer’s first television advertisement for viagra in 1998 got the attention of older men, the initial target audience. it featured a stoic, confident bob dole, talking to the camera as he says: courage – something shared by countless americans. those who’ve risked their lives. those who battle serious illness. when i was diagnosed with prostate cancer, i was primarily concerned with ridding myself of the cancer, but secondly, i was concerned about possible post-operative side effects, like erectile dysfunction, ed, often called impotence. though he never mentions viagra by name, the ad makes the association for viewers that impotence is now being referred to as ed, a more legitimate-sounding medical condition therefore requiring some type of medical intervention. as pfizer’s audience for viagra became broader, their advertising techniques began to reflect this change, at times leading the drug manufacturer to be reprimanded by the fda. in 2004, the wild thing television ad aired, featuring a husband and wife window shopping along a street. the narrator asks: remember that guy who used to be called ‘wild thing’? the guy who wanted to spend the entire honeymoon indoors? remember the one who couldn’t resist a little mischief? yeah, that guy. he’s back. as the narrator is discussing the man’s comeback, the husband stops his wife to look at a black lingerie ensemble featured on a mannequin in a shopping window. she blushes, and he gives an ornery smile, as two triangular blue viagra tablets appear behind his head to simulate devil’s horns. the ad names the drug, yet never reveals the condition the medication treats or its possible side effects. this landed pfizer in hot water, with the fda sending a warning letter requiring that the ad be pulled. not only did the fda find that the ad failed to uphold the requirements of a product claim ad, but that it, along with other campaigns, claim that viagra will provide a return to a previous level of sexual desire and activity. the fda is not aware of substantial evidence or substantial clinical experience demonstrating this benefit for patients who take viagra.21 this is telling because it shows that pfizer has been warned before about making false promises to individuals through its advertising. from 2010 to 2012, pfizer refocused its advertisements using a lens of hyper-masculinity. a different approach from the colorful, bubbly ads that came before them, these versions featured dark, muted colors of older, albeit very attractive, men in isolated settings. each ad featured one man, outdoors in some capacity, with him focusing on overcoming a challenge in a hyper-masculine fashion. using horses to remove a trailer stuck in the mud, using one’s muscles while commercial fishing, and starting a bonfire using only what’s available on the shore of a beach are scenarios presented. this is the age of…is the slogan, followed by phrases that vary for each ad, including knowing how to get things done, knowing how to make things happen, and knowing what you’re made of. the ads go on to reiterate that twenty million men have already taken viagra, reinforcing the bandwagon approach necessary to be a real man when faced with a medical ailment. prior to pfizer’s most recent campaign for viagra, all ads at some point featured the sexual partner, who was always female, and none of these characters ever had a speaking role. instead, the women were included in ways that positioned them as being in awe of the masculinity, vibrancy, and romance the men were exhibiting thanks to viagra. a textual analysis of pfizer’s use of advertising as a vehicle for targeting the medicinal partner beginning in 2014, pfizer changed the predictable formula of its ads for the ed medication, shifting the focus from the male to the female, featuring mature, attractive women that talk directly to the camera (with their male counterparts nowhere to be seen or heard). pfizer’s latest advertisements each feature a monologue delivered by one woman in each version. she is alone, in an intimate setting, talking directly to the camera. for a product that is only consumable by men, it feels odd the first time you watch any of these ads, as no men are featured in these spots. first airing in 2014, the campaign uses a solo female character as the focal point for each ad. this textual analysis of viagra advertisements found two primary themes: i) the male partner as dominant and hypersexualized, and ii) the female partner as evolved from submissiveness toward an increased sexual appetite still dependent upon that of the male partner. in both cases, the role of the medicinal partner is magnified, yet the newest viagra campaigns featuring only women enhance this role in a way that eliminates the man from the conversation altogether. interestingly, these texts are presented in a way that revises the consideration of a medical diagnosis into a conversation that largely emphasizes sex, whereby the consumer of the ad is so inundated by the talk of relationships, sex, and romance that, at times, it becomes easy to forget the fact that a health condition is the basis for the ad. this adds to existent concerns regarding the culture of the pharmaceutical drug industry, where brand names are emphasized in ways that often trump education on medical ailments. the pharmaceutical fetishism, then, becomes the ways in which viagra and its brand identity become the first solution for ed, in a way that celebrates the drug as a cultural authority and relationship solution. the women featured in pfizer’s newest ad campaign fit the bill for advertising’s ideal version of femininity – they are attractive, deferential, unaggressive, emotional, [page 68] [qualitative research in medicine & healthcare 2018; 2:7646] article no nco mm er cia l u se on ly nurturing, and concerned with their relationships.22 in all versions, the woman is speaking directly to the camera while lying on her bed, as if she is having an intimate conversation with a man who may be struggling with his impotence (figure 1). each woman is wearing a sleeveless blue dress, indicative of viagra’s tag line as the little blue pill, and the delivery of her message is done in a way that mimics more of a gentle conversation that is the push a man may need to discuss the medication (not the condition) with his doctor. their physical presentation is impeccable, with each woman being a portrayal of what has been reaffirmed as the perfect woman via the male gaze in consumer culture. each woman is tall, thin, beautiful, and confident. they are clearly successful, as they are shown in environments reserved for the elite. upper class homes with ocean views are portrayed, with bedrooms decorated with little except for the focal point that is the bed. in one ad version (figure 2), the character enters her bedroom holding her purse, clearly just arriving back home after an evening out, as she seductively states: going out for date night with your man is nice, but i think women would agree – snuggling up after (as she lays down) is kind of nice, too. but here’s the thing (she looks down). about half of men over 40 have some degree of erectile dysfunction. well (looking back at camera), viagra helps guys with ed get, and keep, an erection. as the ad continues with a narrator describing the legally required risk information, the woman is shown sitting in front of her vanity and getting ready for bed. she pulls her hair down and removes her earrings. as her silhouette is shown walking behind curtains in her home, she makes direct eye contact with the camera and gives a sexy grin. the ad ends with her laying across the bed, placing her hands underneath her chin, and smiling while saying ask your doctor about viagra. the character in this ad is of mixed-race, presumably including caucasian and african american roots. when this viagra campaign does use a woman of minority status in its ads, it does so in a way that is seemingly promoting racial (and sexual) equality, yet obviously construed via western reinterpretations of what it means to be african american or asian. being a minority character in these viagra ads means that the character is not connected with their cultural identity, as they are fully assimilated in and non-distinguishable from white culture. beyond the product being sold in these ads, pfizer is also reiterating a model of white consumption, where minorities are caricatured in ways that exotify their being as made for sexual subservience to men.23 furthermore, the campaign delivers messages insinuating these women are eager to engage in sex with their partners, yet does so in a way that presents them as innocent and pure. the physical characteristics of the minority characters combined with their outward dispositions further fulfil the exotic stereotype seen in advertising so many times before.23 these ads are constructed in a way that targets both men and women (if we are assuming that heteronormative, heterosexual sexual relationships are the only ones that exist, which is certainly not true, but seems to be a key component of pfizer’s marketing scheme). these ads rely on a female to push a product only directly consumable by men, but does so in a way that alludes to the sexual abilities a man can gain, yet this is still to the woman’s benefit. therefore, depending on which gender is consuming the ad, it is read and understood as being made just for you. if you are a man, your sex life will improve and you get to see an attractive woman selling you the idea. if a woman, you get to partake in the insidiousness of fixing your partner, seeing how your femininity and sex appeal can, like the main character, be the persuasive argument needed to get your partner to ask their doctor about viagra. by encouraging men to ask their doctors about viagra, pfizer is simultaneously encouraging male consumers to celebrate the brand and first and foremost consider the [qualitative research in medicine & healthcare 2018; 2:7646] [page 69] article figure 1. a broadcast advertisement for viagra, featuring a female lead character, aired 2016-present. figure 2. a second broadcast advertisement for viagra, aired 2016-present. no nco mm er cia l u se on ly positive influence the small blue pill could have on their sexuality. doing so requires that the serious side effects possible while taking this medication be considered an afterthought, whereby physical complications (including sudden vision or hearing loss and permanent damage to the penis) are deemed less important than the promise that is always seen in consumer culture – side effects become mere sacrifices made in the name of having a happier life. but it is by using a female ambassador for the brand that pfizer is, for the first time, using the relational counterpart to serve a dual purpose – position a woman as having the ability to literally change her man for her own gain while providing a false autonomy of liberated sexuality. this sexuality, though, is presented through a false lens that favors heteronormative assumptions of what it means to be male or female. the sociological construct of hegemonic masculinity argues that men’s multiple, performed masculinities act along a continuum that exist to reinforce gender boundaries.24 this campaign creates a scenario where a man is seen through the eyes of his female partner – the implication being that the men being talked about are strong, attractive, and righteous, yet; the ads simultaneously present a rarer form of hegemonic masculinity that positions men as being attentive to the emotional and physical needs of the women they care about.25 the irony here is that the man is never physically present in the ads, but pfizer conveys this information without having him in the scene. the man is positioned as the redeemer, or the one in the relationship that can fix the problem at hand. the perfect man is constructed via these ads, and is one that is customizable by design because he is never present on the screen. he is the man a male viewer sees himself as becoming, and the man a female viewer dreams about having. the female characters are presented via the male gaze, positioning each through a frame of what consumer culture tells us regarding how the ideal woman should look, speak, and act. historically, this is nothing new, as commercial programming has long told women to strive for a prescribed version of perfection, including the need for a perfect body, flawless appearance, and successful career.26 what is new is pfizer’s narrative of a female improving herself by influencing her partner’s sexuality in a way that crosses boundaries not available when selling other product categories. the false autonomy present here positions the woman as having the power and prowess to convince men to get a prescription from their doctor. different than other products that could be advertised and purchased between two romantic partners, this category invites a third party into the bedroom – the physician that must write the prescription. this creates a relationship flow between partner 1, partner 2, and the physician, which symbolizes the very goal of advertising. advertising does not just sell products, but if successful, creates an interactive flow between marketing institutions and the cultural world [where] meaning is produced through a culturally determined and socially mediated process which is shared and negotiated between producers and consumers.27 therefore, pfizer has done more than tap into a new demographic in using women in its latest advertising campaigns. it has brought women into the conversation via veiled portrayals that rely upon already-prescribed cultural aspects of sexuality and gender. the women in the ads are shown as entirely fulfilled as long as they can have (penetrative) sex with their partner, stripping away any ability to consider feelings, experiences, or context of relationships. instead, women are presented as beings easy to master by the opposite sex – keep her pleased in the bedroom, and she will have nothing to complain about. using a limited version of what constitutes sexuality (penetrative intercourse between a male and female), the ads clearly position the women via the male gaze, meaning they are portrayed in a hypersexualized manner consistent with consumer culture, presenting versions of women as men want to see them. men watch women and women watch men watching women.28 this analysis provides an example for understanding how social meaning and relationships underlie the market transaction of obtaining a prescription drug. these particular advertisements may be creating belief in the larger sense, meaning pfizer is influencing the medicinal partner to become a focal point in a patient’s process of choice regarding medicinal remedies, while also making a strong statement about heterosexual relationships and individual romantic identity.29 the irony here, of course, is that receiving a prescription for viagra will not be the cure-all for a relationship. viagra cannot fix a broken relationship or create the perfect sexual encounter, yet its ads show us that it can. conclusions this study provided the first identification and deconstruction of a medicinal partner’s role in pharmaceutical advertising, meaning that it is likely the pharmaceutical industry will use this tactic again in the future. this merits future analysis, as the medicinal partner will play an increasingly important role in terms of media consumption and patients asking their doctors about name brand prescription drugs. above even medicine, as agentic beings we hold authority over our own bodies, ultimately having the power to decide which treatment options we will consider and adhere to. however, the success of viagra, financially and culturally, is evidence of pfizer’s larger power over health discourse. the limitations of this study include its analysis of broadcast advertisements, not considering the content of viagra advertisements featured via print (e.g. magazine advertisements) or online. additionally, this study is based on advertisements in the united states, which raises the question of whether such promotions are being used in non-u.s. markets for other health care categories. this [page 70] [qualitative research in medicine & healthcare 2018; 2:7646] article no nco mm er cia l u se on ly particular area presents an opportunity for future analysis, especially in comparison to new zealand, the only other industrialized nation in the world that permits such advertising of the pharmaceutical sector. the pharmaceutical fetishism inherent in the most recent stream of viagra ads is not only the implication that one will have sex. it is the suggestion that one will have better sex that gets the consumer’s attention. viagra acts as a form of life enhancement so very indicative of the pharmaceutical industry – the medication will not change who you are, but it will make you a better version of yourself, meaning a better life is well within reach. consumption is at the heart of this ad campaign, as it is positioned to reflect a woman’s desire to obtain sex with her partner, and plays on the inadequacy a man may feel for not being able to engage in intimate relations with another. the pharmaceutical industry itself prides itself on consumption. in the literal sense, the more pills american are prescribed, the more money is made. in other ways, the theme of consumption aids in perpetuating the alreadyexistent discourse of medicinal authority in the united states – prescriptions are the first option we go to when faced with a medical ailment or condition, assuming a type of cultural significance in that the act of taking a pill becomes positioned as a form of proactivity by the patient. perhaps most important from this analysis is the role of the medicinal partner introduced to the process of pharmaceutical fetishism. while advertising has previously utilized the romantic partner as a persuasive technique, this marks the first time the advertisement solely relies upon that individual. the individual that would actually consume this medication is nowhere to be seen. in ads for other ed medications, for example (e.g. cialis), the medicinal partner is a feature of the patient’s story and journey. in the case of viagra, a new format has been introduced that effectively removes the patient altogether, yet does so in a way that seems harmless. however, upon further inspection, this new persuasive technique is concerning, as this shift signifies a potential re-organization of the patient’s authority in asking their doctor about a medication. more than just a form of suggestive sale made by one’s romantic partner, this presents more questions than answers in terms of how this can impact the discourse of health care that is already over-commercialized in favor of profit in the united states. additionally, from the alternative viewpoint, these ads are equally problematic in regard to the poorly-executed portrayals of postfeminist female partners featured. at face value, these women are presented as empowered, having the ability to not only fix their partner’s ed, but they also are given the space to freely discuss their sexuality. upon further inspection, however, this is a form of faux-empowerment, as it focuses on sexuality in a way that serves to please the male partner, further embedding ideas of what is means to be a normal female sexual partner, perpetuating an ideology that assumes a sexual deficiency is something that must be fixed via performative gender practices.30 the genre of pharmaceutical advertisements have strongly influenced our health care, changing the ways in which we discuss our treatment options with providers, and no doubt serves a capitalist agenda. this form of commercial culture has intersected some of our most vulnerable, private moments – our conversations with our doctor, changing the course of these conversations in a way that is centered on a product to be bought and sold. while the need for pharmaceuticals is paramount, the cultural shift from patient to consumer raises concerns regarding the quality of our health care system. the focus of pharmaceutical advertising should not be on revenue in terms of success measurement – we already know the market effect of this product category. it is arguably too lucrative, too indoctrinated into our media system, to ever go away. the more pressing matter is the consideration of the cultural impact of these ads. an advertisement tells a story, and pfizer has created a whole new book for us to begin reading with its latest campaign. references 1. applequist j, gerard ball j. an updated analysis of directto-consumer television advertisements for prescription drugs. ann fam med 2018;16:211-6. 2. department of health and human services. observations on trends in prescription drug spending, aspe form omb no. 0990-0379. available from: https://aspe.hhs.gov/pdf-report/observations-trends-prescription-drug-spending. accessed 2018 may 14. 3. kantar media. u.s. measured ad expenditures declined 3.9% in q3 2015 to $36 billion. available from: http://www.kantarmedia.com/us/newsroom/pressreleases/us-measured-ad-expenditures-declined-3-9-q32015-36-billion. accessed 2018 may 2. 4. adorno t, horkheimer m. dialectic of enlightenment. new york, ny: continuum; 1989. 5. lupton d. toward the development of a critical health communication praxis. health commun 1994;6:55-67. 6. sharf bf, street rl jr. the patient as central construct: shifting the emphasis. health commun 1997;1:1-11. 7. hallin dc, briggs cl. transcending the medical/media opposition in research on news coverage of health and medicine. media cult soc 2015;37:85-100. 8. jyotti dutta m, de souza r. the past, present, and future of health development campaigns: reflexivity and the criticalcultural approach. health commun 2008;23:326-39. 9. kline nm. popular media and health: images, effects and institutions. in: thompson t, dorsey ki, miller r, eds. handbook of health communication. mahwah, nj: lawrence erlbaum; 2003. pp 557-81. 10. applequist j. broadcast pharmaceutical advertising in the united states: prime time pill pushers. lanham, md: lexington; 2016. 11. jhally s. image-based culture: advertising 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[qualitative research in medicine & healthcare 2018; 2:7646] [page 71] article no nco mm er cia l u se on ly 12. conrad p. the medicalization of society: on the transformation of human conditions into treatable disorders. baltimore, md: johns hopkins university press; 2007. 13. clarke ae, shim jk, mamo l, et al. technoscientific transformation of health, illness, and us biomedicine. am sociol rev 2003;68:161-94. 14. williams sj, seale c, boden s, et al. waking up to sleepiness: modafinil, the media and the pharmaceuticalisation of every day/night life. sociol health illn 2009;30:839-55. 15. gitlin t. prime time ideology: the hegemonic process in television entertainment. soc probl 1979;26:251-266. 16. stern bb. textual analysis in advertising research: construction and deconstruction of meanings. j advert 1996;25:61-73. 17. feldman ha, goldstein i, hatzichristou dg, et al. impotence and its medical and psychosocial correlates: results of the massachusetts male aging study. j urol 1994;151:54-61. 18. thompson d. half of broadcast tv viewers are 54 and older – yikes. the atlantic. 2014 available from: https://www.theatlantic.com/busin ess/archive/2014/03/half-of-broadcasttv-viewers-are-54-and-older-yikes/284256/. accessed 2018 may 30. 19. conrad p, leiter v. from lydia pinkham to queen levitra: direct-to-consumer advertising and medicalization. sociol health illn 2009;30:825-38. 20. newman r. “let’s just say it works for me”: rafael palmeiro, major league baseball, and the marketing of viagra. nine: a j baseball hist cult 2006;14:1-14. 21. hensley s, vranica s. fda tells pfizer to pull viagra ads about ‘wild thing’. wall street journal. 2004 16. available from: https://www.wsj.com/articles/sb11005566598127459. accessed 2018 april 29. 22. wood j. gendered lives: communication, gender, and culture. 3rd ed. belmont, ca: wadsworth publishing; 1999. 23. balaji m, worawongs t. the new suzie wong: normative assumptions of white male and asian female relationships. commun cult critique 2010;3:224-41. 24. butler j. performative acts and gender constitution: an essay in phenomenology and feminist theory. theatre j 1988;40:519-31. 25. henson l, parameswaran re. getting real with “tell it like it is” talk therapy: hegemonic masculinity and the dr. phil show. commun cult critique 2008;1:287-310. 26. faludi s. backlash: the undeclared war against america’s women. new york, ny: doubleday; 1991. 27. tharp m, scott lm. the role of marketing processes in creating cultural meaning. j macromarketing 1990;48:47-60. 28. berger j. ways of seeing. london: penguin; 1972. 29. schudson m. advertising as capitalist realism. in: turow j, mcallister mp, eds. the advertising and consumer culture reader. new york, ny: routledge; 2009. pp 237-255. 30. bedor e. it’s not you, it’s your (old) vagina: osphena’s articulation of sexual dysfunction. sex cult 2016;20:38-55. [page 72] [qualitative research in medicine & healthcare 2018; 2:7646] article no nco mm er cia l u se on ly layout 1 introduction medicine in south africa (sa), as in other parts of the world, is becoming an increasingly inclusive and diverse profession, with growing numbers of women doctors (bates et al., 2016; mckinstry et al., 2006). greater diversity in medicine has led to improved relations with diverse patient populations and a deeper understanding of their needs and backgrounds (sullivan 2004), as well as encouraged varied and novel ways of thinking, enhanced cultural proficiency, and improved patient care and outcomes (klifto et al., 2020). nevertheless, surgical disciplines have continued to be dominated by men operating in the margins: women’s lived experience of training and working in orthopaedic surgery in south africa mari thiart,1 megan o’connor,2 jana müller,3 nuhaa holland,4 jason bantjes,4,5 1division of orthopaedic surgery, department of surgical sciences, faculty of medicine and health sciences, tygerberg, stellenbosch university; 2department of orthopaedic surgery, inkosi albert luthuli central hospital, school of clinical medicine, university of kwazulu-natal; 3ukwanda centre for rural health, department of global health, faculty of medicine and health sciences, stellenbosch university; 4institute for life course health research, department of global health, stellenbosch university; 5alcohol, tobacco and other drug research unit, south african medical research council, cape town, south africa abstract medicine in south africa (sa), as in other parts of the world, is becoming an increasingly gender diverse profession, yet orthopaedic surgery continues to be dominated by men, with women constituting approximately 5% of the profession in sa. the aim of this descriptive qualitative study was to explore women’s experiences of training and working as orthopaedic surgeons in sa and identify structures, practices, attitudes, and ideologies that may promote or impede the inclusion of women. data were collected via focus group discussions with women orthopaedic surgeons (n=16). grounded in phenomenology, data were analysed using thematic analysis following a data-driven inductive approach to making sense of participants’ experiences. five main themes emerged: i) dynamic working environments and the work of transformation; ii) negotiating competing roles of mother and surgeon; iii) belonging, exclusion and internalised sexism; iv) gaslighting and silencing; and v) acts of resistance – agency and pushing back. the findings highlight the dynamic process in which both men and women contribute to co-creating, re-producing, and challenging practices that make medicine more inclusive. correspondence: mari thiart, division of orthopaedic surgery, department of surgical sciences, faculty of medicine and health sciences, tygerberg, stellenbosch university, south africa. e-mail: marithiart@sun.ac.za key words: diversity; medical training; south africa; women; orthopaedic surgery. contributions: mt, moc, jb conceptualised the study. nh and jm conducted data analysis. all authors were involved in data interpretation and preparation of the final manuscript. conflict of interest: the authors confirm that there are no conflicts to declare. funding: the work reported herein was made possible through funding by the fund for innovation and research into learning and teaching (finlo) grant through stellenbosch university (awarded to mt). the content hereof is the sole responsibility of the authors and does not necessarily represent the official views of the finlo grant. the work was also made possible with funding from the south african medical research council (samrc) through its division of research capacity development under the mcsp (awarded to jb). the content hereof is the sole responsibility of the authors and does not necessarily represent the official views of the samrc. ethics approval: ethical clearance for the study was obtained from the health sciences research ethics committee at stellenbosch university (n21/06/054). informed consent: informed consent was obtained prior to data collection. availability of data: availability of data and datasets used and/or analysed during the current study are available from the corresponding author on reasonable request. received: 4 october 2022. accepted: 8 march 2023. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2023 licensee pagepress, italy qualitative research in medicine & healthcare 2023; 7:10902 doi:10.4081/qrmh.2023.10902 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. [page 12] [qualitative research in medicine & healthcare 2023; 7:10902] qualitative research in medicine & healthcare 2023; volume 7:10902 no nco mm er cia l u se on ly (wildschut, 2010). in 1960, only 10% of the sa medical profession were women (digby et al., 2012), but by 2019, women constituted 40.6% of medical doctors, yielding a men-to-women ratio of 1:0.7 (tiwari et al., 2021). between 1999 and 2007, enrollment of women in sa medical schools increased from 49.7% to 56.2%. however, during this period, men still made up 80% of specialists, with women constituting only 5% of surgeons, 4% of cardiothoracic surgeons and 3% of orthopaedic surgeons (wildschut, 2010). in sa, as in canada, the united kingdom and the us, women still tend to specialise in disciplines such as obstetrics and gynaecology, paediatrics, family medicine, and dermatology—a phenomenon that has been called “internal segregation” (wildschut, 2010). globally, orthopaedic surgery has been particularly reticent resistant to gender transformation and continues to report the greatest sex disparity of all sub-specialities (rohde et al., 2016; van heest & agel, 2012). in the us, for example, the women-to-men ratio in orthopaedics changed marginally from 1:7 to 1:6 between 2007 and 2016 (klifto et al., 2020). in 2020, sa had only 51 registered women orthopaedic surgeons, amounting to 5% of the profession (hpcsa, 2022). studies in canada, the us, and the united kingdom have identified several reasons why women choose not to specialise in orthopaedic surgery, including personal preference, the nature and demands of the work, perceptions about the work, tradition, negative experiences of the work environment during training, patients’ attitudes towards women surgeons, long working hours, and difficulties retaining balance between work and family commitments (green et al., 2020). women surgeons in rwanda report similar challenges and attribute their decision to enter the speciality to role models, positive patient encounters, and exposure to surgery (yi et al., 2018). women in surgical disciplines more broadly (i.e., beyond just orthopaedics) experience subtle forms of interpersonal discrimination even when laws are in place to prohibit gender discrimination (myers et al., 2018). studies have documented women surgeons’ negative experiences in the workplace, including interpersonal microaggressions, environmental invalidations, being treated like a second-class citizen, assumptions about traditional gender roles, sexual objectification, assumptions of inferiority, being forced to “leave gender at the door,” and experiencing sexist language (sprow et al., 2021). a survey of women’s perceptions of gender-based discrimination during surgical training and practice found that 87% of women experienced gender-based discrimination in medical school, 88% in residency, and 91% in practice (bruce et al., 2015). a qualitative study of 46 women surgeons and trainees identified four types of bias faced by women surgeons: i) workplace factors such as access to parental leave and role models; ii) epistemic injustices (unfair assessments of women surgeons’ credibility by patients and colleagues); iii) stereotyped expectations that they will carry out more of surgery’s “care work” such as meeting the emotional needs of patients, and iv) objectification (hutchison, 2020). furthermore, women surgeons remain grossly underrepresented in leadership positions in academic surgical departments (jena et al., 2015; zhuge et al., 2011), creating the impression that, for women surgeons, a “glass-ceiling” exists which is perpetuated due to prejudices about traditional gender roles, unconscious assumptions, sexism in medicine, and lack of effective women mentors (cochran et al., 2013; colletti et al., 2000; zhuge et al., 2011). occupying a historically marginalized identity in the workplace, such as being a woman in a field dominated by men, especially in a field dominated by men, has been associated with discrimination (crawley, 2006; pager & shepherd, 2008; smith, 2002), compromising mental health, and decreasing work satisfaction (jansson & gunnarsson, 2018). a survey of orthopaedic surgery residents across the united states and canada found higher levels of depression and worse mental health outcomes among women residents (gosselin et al., 2019). furthermore, women surgeons in the us are more likely to experience burnout compared to their male colleagues, which has been attributed to work-home conflicts and workplace discrimination (dyrbye et al., 2011). indeed, women surgeons’ experiences of marginalisation and discrimination in the workplace are a source of stress that consume energy, which decreases the emotional capacity available for additional roles and negatively impacts their psychological well-being (olsen et al., 2022). women surgeons’ psychological health is affected by their perception of other people’s endorsement of stereotypes in the workplace (salles et al., 2016), and saudi arabian scholars have described the deleterious emotional impact on women when their surgical competence is unfairly questioned (alwazzan & rees, 2016). experiencing marginalisation contributes to trainee surgeons’ attrition, as well as feelings of depression, depersonalization, and emotional exhaustion, which, in turn, compromises patient care and depletes the medical workforce (torres et al., 2019). while studies in sa have explored the experiences of black doctors’ training as medical specialists (thackwell et al., 2016, 2017), no studies have described experiences of women orthopaedic surgeons in sa. understanding the experiences of women orthopaedic surgeons in sa may provide insight into why this corner of medicine continues to be dominated by men and what can be done to promote ongoing transformation and support the well-being of all doctors. furthermore, understanding the experiences of women orthopaedic surgeons could have important implications for protecting and promoting the mental health of women orthopaedic surgeons who occupy a minority position in a historically male dominated work environment. this interpretive qualitative study aims to explore women’s experiences of training and working as or [qualitative research in medicine & healthcare 2023; 7:10902] [page 13] article no nco mm er cia l u se on ly thopaedic surgeons in sa and identify structures, practices, attitudes, and ideologies that may promote or impede the inclusion of women in orthopaedic surgery. materials and methods the study was led by two women orthopaedic surgeons (mt and moc) who wanted to document their experiences and to give voice to other women’s experiences in the profession. data collection purposive and snowball sampling were used to recruit women orthopaedic surgeons working in the public and private sector, as well as women undergoing training to be specialists in orthopaedics. emails inviting women to participate in the study were sent to all members of the south african orthopaedic association, heads of departments at the eight sa universities training orthopaedic surgeons, and to members of the south african female orthopaedic surgeons society. the invitation described the aims of the study and asked women willing to participate in focus group discussions to contact the principal investigator (mt). data were collected in december 2021, during three focus groups conducted online via zoom. a total of 16 women orthopaedic surgeons participated in the focus groups. each group had between four and six participants and lasted 60 to 90-minutes. the focus groups were facilitated by a psychologist (jb) using a semi-structured interview guide which included questions about motives for choosing this speciality, experience of training and working in this field, and challenges and highlights of being a woman orthopaedic surgeon. mt and moc attended all focus groups as participant-researchers, asking questions to clarify what other participants were saying and sharing their own experiences. all focus groups were audio recorded and transcribed. data analysis data were analysed inductively using thematic analysis (braun & clarke, 2012). two researchers (jm and nh), who are not orthopaedic surgeons and had not participated in the focus groups, worked independently to identify the initial codes using atlas.ti and followed the steps outlined by braun and clarke (2012). initial themes were then shared and discussed with the whole research team to gain consensus on a final code book for subsequent in-depth analysis. jm and nh used the code book to conduct an independent, in-depth analysis of the data using atlas.ti. the final list of themes and quotes were then discussed with the research team to gain consensus that participants’ words had been correctly interpreted and to select the most appropriate quotes to illustrate each theme. this process of data analysis triangulation was adopted to enhance the trustworthiness of the findings (saunders et al., 2018). member checking (also known as participant or respondent validation), was also used to improve the trustworthiness of findings by sending a final draft of the manuscript to participants for them to correct any aspects of the findings that did not represent their experience. member checking is a technique used in qualitative research for consulting research participants about the credibility of findings (birt et al., 2016). ethical considerations ethical clearance for the study was obtained from the health sciences research ethics committee at stellenbosch university (n21/06/054). the online focus groups were password-protected; participants could log in with an alias and keep the video setting off to safeguard their privacy. informed consent was obtained prior to data collection. de-identified data were securely stored on a password-protected cloud-based server. all identifying information has been removed from the quotes to ensure anonymity. findings participants consisted of registrars (n=6) and consultants (n=10), from six of the eight universities offering postgraduate orthopaedic training. registrars are middleranking hospital doctors undergoing training as specialists (i.e., the equivalent of a resident). consultants are senior doctors who are qualified as specialists (i.e., the equivalent of an attending physician). among the consultants, seven worked in the public sector, and three worked in private practice. participants were between 25 and 59 years old. five superordinate themes were identified: i) dynamic working environments and the work of transformation, ii) negotiating competing roles of mother and surgeon, iii) belonging, exclusion and internalised sexism, iv) gaslighting and silencing, and v) acts of resistance – agency and pushing back. dynamic working environments and the work of transformation participants described a dynamic and transforming work environment, which was markedly different from the healthcare system prior to 1994, when medicine in sa was still male dominated. they spoke with ambivalence about the use of quota systems and affirmative action to improve gender representation, highlighting how these practices contributed to them questioning whether they had earned their place in the profession. while they celebrated gender diversification in the workplace, they also talked about the emotional work of being active participants in the transformation process and the impact of being part of a minority group. [page 14] [qualitative research in medicine & healthcare 2023; 7:10902] article no nco mm er cia l u se on ly participants gave concrete examples of gender transformation in the workplace and the strategies used to achieve this. p2, for example, contrasted her current environment to the discrimination experienced as a woman doctor prior to 1994: ...[f]emale medical officers still got salaries two thirds of what the equivalent male doctors got… [and] once you married, you lost your housing subsidy…. we also didn’t have paid maternity.… a lot has changed for the better. participants explained how quota systems and affirmative action were being used to recruit more women into orthopaedic surgery and promote the career advancement of hitherto underrepresented groups. while they recognised the need to increase workplace opportunities for women, they also described how affirmative action undermined women by prompting them to question whether they had been selected on merit. p8 explained: … [t]he appointment of registrars has become so much more politicalised…. you kind of have people saying, “oh, but you know that you’ll get the post...because they’re short of woman in the department.” and, i think, for our registrars, there’s probably a very strong feeling of, “am i here because i deserve to be here? or am i here because i’m not a white boy?” similarly, p4 described how her self-confidence was undermined by colleagues saying that she had only been selected for a training program because of affirmative action, going on to explain that she only believed that she had earned her place in the training program once she was affirmed by a man: there were quite a good amount of comments made at many times, like, “oh, yes, there was only two girls before you. they had to employ another girl. so, you played the girl card, obviously going to get the job.” and i remember believing that for a very long time. only recently, i was speaking to one of the consultants who was actually in my interviews…and [he said] they were so happy when i interviewed well, when i scored the best.… it would have been wonderful to know that seven years back, and not for seven years think that you really just got the job because you’re a girl. p4’s experiences not only highlight how a quota system exacerbated feelings of self-doubt, but also illustrates men’s enduring role as gatekeepers to the profession and the power they hold to affirm women’s competence. participants spoke with an acute awareness that they were disrupting an established gender order. they expressed pride in disturbing the status quo, but also said this role was exhausting. they said actively participating in the transformation process imposes additional—often invisible—labor and responsibilities on them, which are not explicitly acknowledged or shared by colleagues who are men. p11 explained: i always feel like i have to first prove myself that i am competent, and that i’m this amazing person, and that i know everything before i can even do something as simple as cutting an incision. i have to first be qualified as an orthopaedic specialist.... i take it personally when that happens to me…. this constant needing to prove myself gets exhausting. similarly, p15 described the impact, emotional labor, and personal cost of being a minority: you deal with the macroaggression. you go home. you debrief. you reflect. you distract yourself. you do something else. that time could have been used for doing something academic. so, every day you’re taking away because each time you’re angry for 10 minutes is taking away 10 minutes of the time you could be using to be productive…. you’re always on the back foot. participants said that as part of a minority group, they felt additional self-imposed pressure to perform exceptionally well so as not to confirm any perceptions that women cannot do the work of an orthopaedic surgeon. p6 explained the origin of this internal pressure, saying: i think the problem is when you are a minority of any kind, in a department, if you are only two of you, and one of you is really great, and one of you is average, they’re going to remember that average one. whereas if there’s 10 men and one is average, you know, it is still only one…. but because you’re compared to your minority group, that then becomes like a generalisation. participants used metaphors of war and combat to describe the emotional impact and trauma of participating in the work of transformation. p6 said, “they survived, but i mean, just like in a war, with like bits missing, you know, maybe not sort of like physical wounds, but definitely sort of emotional wounds.” while participants acknowledged that progress towards gender diversity had been made, they also said the pace of change was slow and expressed pessimism about the possibility of radical change in the foreseeable future. p15 articulated this saying, “i’m now sitting here thinking, ‘it doesn’t get better.’ i thought it would get better.” and p8 concluded, “i don’t see it changing anytime soon.” [qualitative research in medicine & healthcare 2023; 7:10902] [page 15] article no nco mm er cia l u se on ly negotiating competing roles of mother and surgeon participants spoke about the challenge of trying to balance the competing roles of surgeon and mother and the sacrifices this entailed. they spoke about the difficult decisions they had made to delay motherhood and described how the working environment and the work of orthopaedic surgeons made it difficult to be pregnant, especially during training. they identified structural barriers, such as the nature of the work and the physical consequences of being pregnant, which made childbearing difficult, but they also highlighted attitudes and prejudices expressed by men and women colleagues, which exacerbated these structural barriers and made it more difficult to be a mother. participants spoke with sadness and frustration about their decisions to sacrifice or delay motherhood so that they could realize the orthopaedic surgeon’s role, implying that they experienced these two roles as mutually exclusive. p15 said, “i’ve had how many ladies in front of me now, about four or five. only one has been brave enough to have a child during reg [training], time. it saddens me.” and p6 said, “i really feel as much as i love my job, i feel like orthopaedics has robbed me of my fertility. and i resent it for that.…” participants said that the work environment—especially during training—made it almost impossible to be pregnant because work entails frequent and unavoidable exposure to radiation and physical exertion which compromises maternal health. p16 described the challenges she experienced being pregnant during training, saying: … [t]hen you get to about six or seven months [pregnant], and you’re like really tired. your back is sore now. i can’t actually push this traction table so well. it’s really heavy and, also, i guess i didn’t realise how much weaker i would feel physically. p13 reiterated the physical demands of pregnancy and the challenges of being a working mother, “it’s really damn difficult being pregnant and working. it’s even harder having a child or a toddler and trying to study, so it’s really not that easy.” several participants described reluctance to take maternity leave, being cognizant of the additional workload this would impose on colleagues and the disruption to their own training. they described hostile and unempathetic reactions of colleagues when pregnancy prevented them from being on call. p15 said, “i still think there’s an undercurrent of, if you employ a woman, it’s a risk, because she may want to have a baby, you know, and our program is not really structured around that.” and p8 said: [my colleagues said,] “how can she want to stop doing calls at 37 weeks? now we must pick up her calls!” when i can’t see my feet, and my back’s killing me, and i’m having pre-term contraction. all i wanted was to stop doing calls a month before i popped a human out of my body [but] that was not acceptable. p15 acknowledged that it was similarly difficult for men to take paternity leave and said that men not taking paternity leave made it even more difficult for women to assert the right to take time off to during and after pregnancy: “if a man is too scared to take paternity leave, where does that leave a woman?” (p15). participants described how male colleagues made inappropriate comments which made it clear that women were expected not to fall pregnant. p6 explained, “every time he [the head of department] would call me in to discuss something else…unrelated, his parting words to me would always be, “whatever you do, just don’t fall pregnant.’” participants expressed sadness and concern about the health and fertility consequences of their decision to delay motherhood until after training. p15 said: i’m much older, and, you know, to now finish and then try to have a child, it’s just not fair physiologically. it’s not fair to ask me to put it off because, you know, for them, for males they can have a child at 90. it doesn’t matter. and p6 described the career sacrifices necessitated by pregnancy and motherhood, saying: i just feel like my professorship or whatever is going to be at least five to seven years delayed [compared to] whoever qualified with me, because i’m still trying to create this family…. i’m behind the men, my peers, because they’re writing articles and like pumping out things because…wife is at home looking after the babies…. i now have to juggle both, and from an academic trajectory, i think we’re on the back foot. this sense of “being on the back foot” (p6) and “making sacrifices” (p15) to be a mother negatively impacted participants’ job satisfaction and left them feeling robbed of the experience and joy of motherhood. it was explicit in the words of participants that they could not reconcile the role of mother and orthopaedic surgeon and that structural and attitudinal changes in the workplace would be needed to enable reconciliation of the two roles. belonging, exclusion and internalised sexism while participants spoke of finding their place in orthopaedic surgery and said they experienced a sense of belonging in this field of medicine, they also described ongoing systemic barriers which blocked full participation in the profession and left them feeling alienated from colleagues. the experience of simultaneously finding their place in the profession and being excluded from full par[page 16] [qualitative research in medicine & healthcare 2023; 7:10902] article no nco mm er cia l u se on ly ticipation, engendered a sense of thwarted belonging. aside from encountering sexist attitudes from other men doctors, nurses, and patients, they also described how other women expressed sexism and identified ways in which they themselves had internalised and reproduced sexism. participants explained how they “belonged” in orthopaedic surgery and described the joy of discovering a place in medicine that piqued their interests and matched their aptitudes, finding the speciality a “perfect fit” (p1) for them, and “being at home” (p2) doing the work of an orthopaedic surgeon. p1 said, “i started, and i found orthopaedics a wonderful mix between the engineering, and the building, and the three-dimensional thinking and puzzle solving that i love, mixed with the humanity of medicine.” p2 explained, “in my fourth year, we had the experience of being on call in the orthopaedic section of the [name redacted] hospital. and i just totally fell in love and just felt this is my place.” although participants said they found their work environment demanding and challenging, no one said they regretted choosing this speciality. p14 explained: when we got exposed to what orthopaedics was actually about…it was simply amazing. it’s clean. it’s cleaner than surgery. and you get to be in theater all the time, and it’s just a whole lot of fun. so, i don’t think i have any regrets. however, participants also described sexist attitudes and institutional practices that contributed to feeling excluded and marginalised. p10 described the alienating impact of confronting gender stereotypes, saying, “we had to assist for cases in private, and i could hear on the phone, how the guy said, ‘don’t send me a girl to assist. they can’t do it.’” they described the culture of orthopaedic surgery as an “old boys’ club” that affirmed heteronormative, traditional masculine modes of expression. for example, p9 described feeling marginalised and alienated from men colleagues because she did not share their interest in traditionally “male” sports: the boys would go off and ride their bicycles, or they all seem to go and ride motorbikes.... and i would go, and i’d pick up my tennis racket, and i’d go and hit a few tennis balls or whatever it was.… you always feel separate or alone…. it’s just the way it is. likewise, a participant reported that a male colleague commented, “you are not one of us” (p15), which reinforced the perception of being out of place in the orthopaedic environment. p15 explained: … [i]n an interview he [senior male colleague] let slip that i wasn’t a [white male]... [he said] “we can’t really deal with you yet.” i would just like to be an orthopaedic surgeon. i didn’t know i was offending anybody by trying to be that. and so, it becomes difficult, you know when people say that to you, and it hurts…. all but one participant gave examples of encountering gender expectations and explicit sexist attitudes from other doctors, nursing staff, and patients. for example, p15 described the emotional impact of regularly not being recognised as an orthopaedic surgeon because it is typically assumed that the surgeon would be a man: i walk into a strange theater. everybody turns. i need to introduce myself. “hi, this is who i am, i am here to do this [surgical procedure].” it is exhausting, as you’ve been doing it [explaining who you are] every day…. you do it when you’re on call. and at 3 a.m. in the morning you get somebody who’s going to say something left ways [derogatory], and you burst out at them because you’ve been carrying this the whole day. then you get reported, “oh, she’s being emotional!” but no one understands that was the fifteenth person of that day to undermine you. participants also articulated a perception that men surgeons are assumed at face value to be competent, but women are required to demonstrate competence before they are recognised as surgeons. p3 explained: …[a]nd the sisters [nurses] always think i’m either the rep or the radiographer and never think you’re the surgeon. and you have to also prove yourself to them, that you’re a capable surgeon before they start trusting you with things. similarly, another participant said: ….[p]atients assume you’re not the doctor—you’re the nurse. or [they assume] your big burly [man] intern is the orthopaedic surgeon. and you know, [they assume] you’ve got to be the assistant…. and you’re explaining the operation in detail [to the patient]...and then the patient turns to him [the intern] and asks a question that he can’t answer. (p5) these stories highlighted the frequency with which participants were “not seen” and/or “misrecognised.” they experienced this misrecognition as a recurrent unambiguous reminder that women are out of place doing the work of an orthopaedic surgeon and do not belong in this field of medicine. participants said that some of the most blatant sexism they had experienced came from other women—not only women nurses, but also other women specialists. p6 explained: [qualitative research in medicine & healthcare 2023; 7:10902] [page 17] article no nco mm er cia l u se on ly … [m]yself and another female were both asked in the interview process, whether or not we plan to fall pregnant, during reg [training] time, which is actually illegal. you’re not allowed to ask that, but we were both asked, and that question came from a senior female in the department. another participant said: as much as i’ve had a lot of trouble with men in my departments, my worst case was with a female head of department. i don’t know why that happens, and i can’t explain it really…. maybe it’s because you have your guard down when you’re with the female head of department, and so it hurts more. (p11) similarly, r13 said: the hospital that i haven’t felt comfortable at is actually because of the senior woman who makes all the other women feel inadequate…. unfortunately, all the registrars or medical officers that have been female have had the same problem with this particular woman, and it’s quite traumatizing. i honestly actually have ptsd [post-traumatic stress disorder] right now from her behaviour so now, when i have to go to the hospital, i, literally, like get anxious and nervous. some participants acknowledged that they too hold women trainees to a higher standard than their male counterparts, with an expectation that women should “do better than men” (p6). they acknowledged that this double standard contributed to increasing the pressure on other women and made the work environment less hospitable for them. these experiences seem to point to internalised sexism and a complex dynamic in which women contribute to co-creating and reproducing a work environment with different rules for men and women. p1 said: i really do try and be an advocate for the women, but at the same time, i think, as a woman in the department, i do hold them [women] to a higher level…. it’s about holding them to a higher standard. because i want to be proud of that minority. i really want to be proud of those girls. i want them to achieve. i want them to be beyond question. participants also articulated a perception that senior women colleagues were harsh on junior women because they were unconsciously re-enacting their own experience of being treated badly. p8 said: i almost feel like there’s this divide, and as a female consultant or senior, you can either be an absolute bitch or you can be a mentor, and i’ve encountered both…. they think “i’ve had it really hard in getting to where i am, and i’m going to make you work just as hard, because i didn’t have it easy.” gaslighting and silencing participants said they experienced gaslighting—i.e., being psychologically manipulated into doubting their own perception of reality and/or memory of events— when they tried to talk about sexist practices, which made it very difficult for them to raise concerns about subtle gender discrimination in the workplace without being positioned as “crazy” (p6) or “emotional” (p15), “imagining” (p6) this transgression or being “too sensitive” (p6). these experiences acted as a prohibition to talking about sexism and left them feeling silenced, unheard, and afraid to raise their concerns. p6 described a scenario where she tried to draw attention to a male colleague’s sexist remark: “…the fact that they did not actually acknowledge it—to go, “sorry you’re right’…. [instead, they] don’t seem to want to admit it.” participants explained that they were sometimes called “combative” (p16) for drawing attention to gendered practices. while they acknowledged that they were assertive and passionate about raising these issues, they did not experience themselves as combative. this incongruence between their experience of themselves and their colleagues’ experience of them was perturbing and contributed to participants questioning their perception of themselves, including their sanity and judgement. p16 explained: you know that sometimes these comments can be bounced off because you’re resilient, but if people say things to you—like “you’re combative,” and you don’t experience yourself like that—then those kind of micro-traumas will wear anybody down. and you wouldn’t be human if they didn’t have an impact on your mood or your level of job satisfaction. it’s not nice to be in a situation where people are telling you things that you don’t experience of yourself. participants said that they felt silenced from gaslighting incidents and were afraid to be too assertive for fear of the consequences. p13 explained, “no one is standing up and saying anything. ‘you want us to lay the complaint? you want us to email prof [the head of department]? you want us to contact them?’ but we’re too scared.” and p14 said: i’ve seen it around me…. you are trying to obviously change the status quo, while the people who are very happy in the status quo are going to do almost everything to make sure that the things don’t change. i saw it happen in our…department where this very vocal passionate, intelligent—they might [page 18] [qualitative research in medicine & healthcare 2023; 7:10902] article no nco mm er cia l u se on ly have named her a combative female in that department—was kind of pushed out because she wanted things done differently. implicit in the words of participants was a double bind; if they spoke directly about their experiences of sexism, they would run the risk of being gaslit and/or positioned as combative and/or squeezed out of the department, but if they remained silent, they would feel that they were complicit in perpetuating sexism and, hence, impeding gender transformation in orthopaedic surgery. this “double bind” created internal tension and frustration which impeded participants’ job satisfaction. acts of resistance – agency and pushing back participants described strategies they use to resist and disrupt the status quo. they explained how they affirmed their sense of agency and pushed back against being marginalised through acts of resistance and rebellion which included positioning themselves as stubborn, consulting lawyers to assert their legal rights, taking a stand about sanitary bins in bathrooms, claiming space, wearing boldly colored dresses, insisting on maternity leave, and expressing milk at work when they were breastfeeding. above all, participants described becoming comfortable with not fitting in and expressed pride at being different. participants explained how they resisted marginalisation by asserting themselves and playing the role of rebel. p1 described her tenacity and rebellion, identifying herself as stubborn—a label she reclaimed and wore with pride—saying: i really do believe we are a stubborn lot of women who have really gone out and said, “you know i’m going to do what i love. i’m going to do it well, and… stuff everyone’s opinion about me doing that.” and p4 said: that didn’t sit well with me, to be told that i can’t do something. so, i think that maybe fuelled my rebellious side to the point that i decided, well, i can do it now, and i will do it great! participants gave examples of the lengths they went to challenge the status quo, including consulting labor lawyers and insisting on sanitary bins being placed in the bathrooms. p13 said, “i went to, i even contacted like labor lawyers to see what the law says, and labor laws for doctors in general….” another participant explained: there was a big uproar when i had to add a bin for sanitary pads to our one toilet that we had in our hospital. oh my god, it was like the world is going to end. so, they were like, “why do we have to have a bin, sanitary pads in our toilet?” and i was like, “yes because there are now women in our department and get over it.” (p8) participants reported pushing back against the notion that there is no room for femininity in orthopaedics by wearing dresses and dressing in bold colors, especially at conferences where they expressed feeling particularly marginalised. p6 said: i make a point of when i go to congress, when all those men are there at the annual meeting, i make sure that i’m wearing something bright, because they’re all in grey and navy and black…just to be sort of like, “just remember, we are here and we are not going anywhere.” i do it on purpose as an act of rebellion. similarly, another participant described her defiant response when she was asked if she planned to fall pregnant: …[w]hen i got there, i was asked [if i was planning to fall pregnant]. so that’s just a little bit ridiculous. so, i asked them if they plan to get into any major accidents or get any major surgery or get cancer, then they should just, please, let me know. (p10) and p12 explained how after having a baby, she used expressing milk as an opportunity to make a point about women doctors’ needs: i had to express breast milk during the day…. i just told the guys like, between cases, “now, i need twenty minutes to go express. i’ll write the theatre notes, while i’m expressing in the office. i need that office, please. thank you.” i had to give my one male colleague a lift between the two hospitals, so he had to wait outside the car while i set up, and i put a blanket over myself, and i expressed next to him in the car on the way to the other hospital, and he had to deal with it. he didn’t have the guts to say anything about it. participants also asserted that they felt comfortable with “not fitting in” and challenging established practices. throughout the interviews, there were implicit assumptions about the value of diversity and the benefits of questioning traditions. p9 explained how she had become comfortable with challenging conventions and celebrated the benefits of diversity. it’s only as i’ve gotten older that i realised that you shouldn’t fit in. that’s the beauty of it. you contribute because you’re different. you see things differently, you approach patients differently, you handle conflict differently, you handle manage [qualitative research in medicine & healthcare 2023; 7:10902] [page 19] article no nco mm er cia l u se on ly ment of groups of people differently, you crisis manage differently, you think differently in theatre, and that’s because you are a woman. and i wish i had known that earlier, because it really tormented me, this dire need to fit in, to be able to be one of the boys, but you’re not going to be one of the boys…. you shouldn’t be one of the boys. that’s the beauty of having different races, and different genders, and different identities in a group, is that you can approach it in a different way. discussion participants in this explorative qualitative study describe working in a system that is undergoing visible transformation as more space is made for women in a field of medicine traditionally dominated by men. they describe participating in the transformation process and the emotional and often invisible labor this entails. they describe the satisfaction they experience doing the work of an orthopaedic surgeon while also encountering systemic structural and attitudinal barriers to their full participation in the profession. their experiences of simultaneously finding a perfect fit in this specialty while feeling blocked from fully participating precipitated a sense of thwarted belonging. the experiences draw attention to the painful sacrifices they make to straddle the role of mother and surgeon while resisting and challenging the status quo. previous studies have described surgery as a “boys club” with fiercely protected boundaries that restrict access (gargiulo et al., 2006), which is consistent with how the women in our study experience orthopaedic surgery in sa. indeed, it is this tightly controlled membership that in part makes the profession exclusive and distinctive. the women in our study are aware that they have crossed the boundary and work hard to affirm their place in this “club,” yet they still sometimes feel that their belonging is thwarted. previous studies have demonstrated that a lack of belonging contributes to trainee surgeons’ attrition, depression, depersonalization, and emotional exhaustion (torres et al., 2019). it is thus unsurprising that the women in our study describe the emotional effort and tediousness of being excluded as they confront sexism, deal with microaggressions, and are misidentified. a scoping review of microaggressions experienced by women in surgery identified several common experiences, including encountering assumptions that women have inferior surgical skills, attitudes about traditional gender roles, and sexist language (sprow et al., 2021), all of which are common to the experiences of the women orthopaedic surgeons who participated in our study. it is remarkable that the women in our study spoke so explicitly about the inability to reconcile the role of mother and surgeon and the struggles they felt to assert basic rights to maternity leave, even though sa has a liberal constitution which affirms and protects women’s rights. the role of the mother is closely tied up with social constructions of what it means to be a woman, and pregnancy is a natural expression of womanhood. in this sense, a work environment that does not make space for motherhood sends an unambiguous message to women that they cannot bring all of themselves to work. implicit in the words of participants was a perception that to assume the role of surgeon, they were encouraged—if not expected—by both men and women colleagues to deny motherhood and thus split off parts of themselves that are deeply entangled with womanhood. again, these tensions are not new (morantz-sanchez, 1985) or unique to sa (yi et al., 2018). a recent us study found that 84% of female residents did not start a family in their training and that these women experienced bias concerning pregnancy from both senior colleagues and their peers (mulcahey et al., 2019). similarly, studies have documented women surgeons’ perceptions that they are expected “to leave gender at the door” when they come to work (sprow et al., 2021), as is implicit in the words of our participants. it is noteworthy that the women in our study report experiencing sexism and gender discrimination from other women—including nurses and senior medical specialists—as has been reported in previous studies of women surgeons’ experiences in the us (bruce et al., 2015). however, our participants also explicitly acknowledge that they too sometimes express and enact sexist attitudes by holding other women to a higher standard than men. there is extensive literature describing “mean girls,” “queen bees,” women’s competitiveness with other women, and internalised misogyny in the workplace (harris & kramer, 2019), particularly in the corporate world (tosone, 2009). still, this dynamic has not been widely explored in medicine. scholars have described how senior women in business environments block and undermine more junior women to prevent them from climbing the hierarchy (johnson & mathur-helm, 2011), a practice which is not uncommon in traditionally men-dominated work environments (abramson, 1975; davidson & cooper, 1992; gini, 2013). other studies have also described how senior women working in male-dominated environments are more critical of women subordinates and require more of women subordinates compare to men colleagues (derks et al., 2011; moalusi & jones, 2019). it is theorized that this occurs because women working in environments dominated by men want recognition of their own abilities to have “made it” and wish to remain unique in their environment, maintaining their “queen bee” status (davidson & cooper, 1992; mattis, 1993). it has also been suggested that women in these environments tend to assume hyper-masculine leadership characteristics, rejecting their femininity and becoming more brash and aggressive as they assimilate into the dominant culture (merrick, 2002; yi et al., 2018). another interpretation is that the senior women working in these environments are re-enacting the sexist attitudes they have been subject to be[page 20] [qualitative research in medicine & healthcare 2023; 7:10902] article no nco mm er cia l u se on ly cause they have unwittingly and unconsciously internalised sexism, in the same way that racism and stigma are internalized (david, schroeder & fernandez, 2019; fernández et al., 2022). the presence of gaslighting among our participants is further evidence of the power imbalance that exists in the historically patriarchal medical profession and is congruent with the findings of other studies describing gaslighting and bullying within the medical profession (fraser, 2021). gaslighting is less tangible and more difficult to expose than bullying, but can similarly have a pervasive psychological impact on healthcare workers (fraser, 2021). typically, in medicine, gaslighting occurs in doctor-patient interactions when patients experience invalidation, dismissal, and consequently inadequate care at the hands of doctors (sebring, 2021; thompson et al., 2022). however, it also occurs between doctors, particularly when there is a power imbalance, as for example, occurs in training programs. crucially, our participants describe how their experience of gaslighting makes them anxious about raising their concerns and acts to silence and restrict them. finally, the women in this study describe clearly the active and conscious role they play in exercising agency and resisting sexism in orthopaedic surgery. they acknowledge that they are active participants in a dynamic process where they are not powerless to influence the status quo. while they acknowledge that this resistance is sometimes emotionally gruelling, they nonetheless express pride at the role they are playing in transforming the profession and speak of their increasing comfort at being different and not having to “fit in.” it is a limitation that the study did not explore intersecting identities, including how gender intersects with race, ethnicity, sexual orientation, and disability. the study focused narrowly on women’s collective experiences, and the sample was too small to adequately explore intersectionality. it would be very helpful, particularly in countries like sa that have a history of discrimination based on gender, sexual orientation, and disability, for future studies to focus on the dynamics of intersecting identities, although doing so would probably require an expansion into other surgical disciplines, given the small number of orthopedic surgeons with these social identities. conclusions the findings of this study draw attention to the ongoing process of transformation that is happening in orthopaedic surgery as more sa women claim their place in a profession historically dominated by men, highlighting both the progress that has been made and the work that still needs to be done. most importantly, the findings remind us of the dynamic process in which both men and women contribute to co-creating, re-producing, and challenging practices which make the profession more inclusive and diverse. the findings of this study highlight some of the structural and attitudinal barriers that may impede ongoing gender transformation in the profession, but also provide key insights into the psychological and emotional impact of occupying a minority position in medicine. references abramson, j. 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(2004). missing persons: minorities in the health professions, a report of the sullivan commission on diversity in the healthcare workforce. https://doi.org/10.13016/ cwij-acxl thackwell, n., chiliza, b., & swartz, l. (2017). race ethnicity and education mentorship experiences during registrar training: reflections of black african specialists in the western cape. race ethnicity and education, 21(6), 791–807. https://doi.org/10.1080/13613324.2017.1294572 thackwell, n., swartz, l., dlamini, s., phahladira, l., muloiwa, r., & chiliza, b. (2016). race trouble: experiences of black medical specialist trainees in south africa. bmc internationa health and human rights, 16(31), 1–6. https://doi.org/ 10.1186/s12914-016-0108-9 thompson, c. m., babu, s., & makos, s. (2022). women’s experiences of health-related communicative disenfranchisement. health communication, 25, 1-12. https://doi.org/ 10.1080/10410236.2022.2137772 tiwari, r., mash, r., karangwa, i., & chikte, u. (2021). a human resources for health analysis of registered family medicine specialists in south africa: 2002–19. family practice, 38(2), 88–94. https://doi.org/10.1093/fampra/cmaa084 torres, m. b., salles, a., & cochran, a. (2019). recognizing and reacting to microaggressions in medicine and surgery. journal of the american medical association surgery, 154(9), 868– 872. https://doi.org/10.1001/jamasurg.2019. 1648 tosone, c. (2009). sotto voce: internalized misogyny and the politics of gender in corporate america. psychoanalytic social work, 16(1), 1-11. https://doi.org/10.1080/15228870 902837715 van heest, a. e., & agel, j. (2012). the uneven distribution of women in orthopaedic surgery resident training programs in the united states. journal of bone & joint surgery, 94(e9), 1–8. https://doi.org/10.2106/jbjs.j.01583 wildschut, a. (2010). exploring internal segregation in the south african medical profession. journal of workplace learning, 22(1–2), 53–66. https://doi.org/10.1108/13665621011012852/ full/xml yi, s., lin, y., kansayisa, g., & costas-chavarri, a. (2018). a qualitative study on perceptions of surgical careers in rwanda: a gender-based approach. plos one, 13(5), e0197290. https://doi.org/10.1371/journal.pone. 0197290 zhuge, y., kaufman, j., simeone, d. m., chen, h., & velazquez, o. c. (2011). is there still a glass ceiling for women in academic surgery? annals of surgery, 253(4), 637–643. https://doi.org/10.1097/sla.0b013e3182111120 [qualitative research in medicine & healthcare 2023; 7:10902] [page 23] article no nco mm er cia l u se on ly layout 1 introduction the covid-19 epidemic presents multiple and unexpected challenges to western society,1 not just to the medical system. it caused a severe economic downturn that included joblessness. the lockdown of entire cities and countries overtaxed the emotional reserve of the population and restricted the possibility of social exchanges and emotional support. from a medical standpoint the most urgent needs included proper isolation procedures, increased availability of intensive care, development of medications and vaccines. equally important was the health maintenance of health professionals who are the frontline soldiers in the war against coronavirus. because of exposure they are at higher risk of infection than the general population. because of their work demands they are at increased risk of emotional burn out.2 several studies have already explored these issues with traditional research methodology. as necessary as these studies are, they cannot substitute for the unique observations derived from lived experience of those personally affected as practitioners and patients. as a physician who has worked with covid patients, and has been close to death from a covid infection i bear witness to the lessons i learned from this experience with my colleagues. i learned that a medical crisis unveils unsuspected resources of human solidarity and professional energy. an effective leader needs to harness and exploit these resources. to do so he/she should behave as a role model rather than as a commander. as a patient on the brink of death i learned that a serious disease represents a unique opportunity to explore the scope of one’s humanity. in particular i learned that healing is always possible even when cure is out of reach and that healing should be the ultimate goal of medical care. case report a few words of introduction. i work in an internal medicine ward in the cuneo general hospital, and i love my job. i never conceived of become anything but a doctor and to do anything else but to follow my dad’s footsteps. as a child i could hardly wait to grow up and come home to share with my spouse and my children the stories from the hospital. “vincenza went home today on her own two feet, smiling surrounded by smiling parents and smiling sisters. the last lumbar tap was negative. i really believe she may be cured. this morning, before her family arrived she asked me in private if she could french kiss her boyfriend without risk to him!” or “ you know, we think of death as a definitive loss, but today i learned that death may be a memorable event, like a birth or a wedding. today an old farmer died surrounded by his spouse and seven children: all of them received communion. the old man could hardly talk but i heard him whispering covid-19: a learning moment for patients and health professionals stefano leccardi cuneo general hospital, boves (cn), italy abstract a hospital physician from northern italy describes his own experience as caregiver of covid-19 patients and as a patient himself who required treatment in urgent care. from this experience he learned that an untapped reserve of human solidarity exists in a team of caregivers in the midst of a crisis where they find an unsuspected shared energy. he never would have believed to be able to work long hours patiently and without sleep until he was challenged by the demands of the covid crisis. as such, he discovers that to be effective the team leader should lead by example rather than by commandments! his experience as a patient allowed him to face his own mortality, to learn that healing rather than cure is the ultimate goal of caregiving. correspondence: stefano leccardi, cuneo general hospital, via dei benedettini 27, i12012 boves (cn), italy tel.: +393472531158 e-mail: stefanoleccardi@gmail.com key words: covid-19; healing; urgent care; solidarity; nonverbal communication; patienthood. conflict of interest: the author declares no conflict of interest. ethics approval: not applicable. received for publication: 19 october 2020. accepted for publication: 4 december 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2021 licensee pagepress, italy qualitative research in medicine & healthcare 2021; 5:9688 doi:10.4081/qrmh.2021.9688 [page 10] [qualitative research in medicine & healthcare 2021; 5:9688] qualitative research in medicine & healthcare 2021; volume 5:9688 no nco mm er cia l u se on ly “that is the way i want you to remember my death, as the moment when faith brought together our family, when you could witness that i entered eternity.” how much wisdom could faith bring to a person who could barely read and write.” when i heard these stories from my dad i felt attracted to medicine, by the privilege to access other people’s intimacy, to share their joy and grief. i felt endowed with the mission to continue the mission of my father, who had been chief of internal medicine for forty years in a major hospital almost until his death. as most physicians of my generation i did pursue a subspecialty. for almost ten years i had worked as a pulmonary consultant in critical care. i felt comfortable in manning the breathing machines, but in my heart of heart i did long for direct contact with the patients. indeed i think that the machines burned me out. i got tired of looking at numbers and screens and dials. dad seemed to enlighten with his smile each hospital room he visited. i wanted to feel like that sun myself. when the position of attending became available i felt that my professional dream had been realized. the practice of internal medicine enlarges the scope of your medical knowledge. it gives you a feeling for the seriousness of different diseases, for the impact they may have on the patients and their family. it fosters cooperation with the hospital staff and promotes the spirit of a team. most of all it allows you to recognize the influence of patient individuality on medical outcome. i learned that the disease is a theoretical construct necessary to inform our care, but the only reality is the patient in front of you. your ability to deal with personal problems may be as important as the prescription of the correct investigation or medication.3,4 the setting of my practice is very relevant to my history. cuneo is the capital of a province in the northern italian region of piemonte. it is surrounded by mountains and presents difficult access when compared with other towns of the same importance. to reach cuneo by railway from alessandria a little more than 100 kilometers away you need to change train once and it may take as long as four hours. by car you have to negotiate the traffic and the traffic lights of multiple villages as no highway reaches cuneo. one may think that the personality of the citizens has been molded by the geographic isolation. hard working people, of few words, they are extremely fair in business transactions and express mutual solidarity with actions rather than with words. i barely exchanged more than good morning and good evening with the lady that collected the dirty cloths of the patients, yet she was crying at my dad’s funeral. i learned from some acquaintances that she was very grateful to me for being invited every year to the christmas party at my house, even if she never showed up out of shyness. the people of cuneo may appear suspicious of anybody perceived as a foreigner as an intruder threatening their routine. in most cases i believe we are dealing with timidity, with the fear not to understand the expectations of new people and not to live up to those expectations. for the same reason the inhabitants of cuneo and its province feel isolated from the rest of the country, and this feeling of isolation inspires a false sense of security from the threats of the outside world. few years ago, an old friend, amedeo capetti m.d., proudly announced to me that a patient affected by sars, a lethal infection from asia, had left his ward alive and well. i shared his pride. i had trained years before in respiratory disease at the same sacco hospital in milan. at the mean time i looked at sars as an exotic disease i would have never had an occasion to treat in cuneo. little did i know then that in a few years my very hospital would have been inundated by coronavirus patients. and i am proud to say that this experience reinforced my faith in human creativity and solidarity as no other experience in my twenty-five years of medical practice. since its beginning the coronavirus infection was rampant in lombardy, the region adjacent to piemonte. every night the television was broadcasting the parade of death carts, transporting the dead to the bergamo cemetery. it was a devastating spectacle that evoked the image of plague epidemics from centuries ago. something we were all but certain we would have never witnessed in our times. for me it was also personal. in that very cemetery we had laid to rest few months before my younger brother, a psychiatrist who had succumbed to a year long very painful battle with melanoma. any burial renewed my pain. yet a general feeling prevailed that our community may have been preserved from covid-19. on a sunday we heard that two chinese citizens had been admitted to our hospital with symptoms consistent with covid. everybody was relieved as we learned that the diagnostic test was negative. maybe there was indeed a magic barrier protecting our province from nocuous external influences. after all the two patients were not even resident of our province. yet deep down everybody knew that the battle with coronavirus was unavoidable and had been only delayed. one day a new wall of sheetrock rose suddenly and unexpectedly between the internal medicine and the geriatric wards. it was the first tangible reminder that the enemy was closing on us. our ward was designed to receive the overflow of covid patients and all contacts with areas hosting patients vulnerable to the infection had to be rescinded. thanks to my training in respiratory diseases i was assigned to the team that would have cared for covid patients. i faced a revolving door: i had to decide right away whether to accept my new role or to decline it. long and unpredictable working hours would have kept me away from my spouse and my daughter, that i loved more than anybody else in this world. worse, i might have carried the infection to them from the hospital. they might have gotten sick. god forbid they might even have died. at the [qualitative research in medicine & healthcare 2021; 5:9688] [page 11] medicine at the end of the world no nco mm er cia l u se on ly meantime i was overwhelmed by the compulsion to pay back the society for a very rich and enjoyable life. i had so many reasons to be grateful! my wife and i had shared an awesome adventure. i thought of the adoption of our child from columbia, who came as a joyful and unexpected surprise after many years of vain hope. i thought of my work where i had so many opportunities to witness the healing of the souls if not of the body. i thought of the friends that had supported with enthusiasm my journey through life. there have been difficulties, there have even been tragedies in my life, but thanks to my family and friends i have been able to live each one of them as learning moments, as occasions to embrace with awe and gratitude the mystery of life. all people i had loved, even those who had died, gathered around me and smiled: “to refuse this service is just impossible!” and with a smile i faced this new commitment. the covid journey began with the beginning of march. the very first challenge was to establish certain diagnostic criteria. the patient was febrile, lethargic, fatigued. were we dealing with a common viral infection or with covid? let’s see: his son used to work in milan, and he might have contracted covid from him…. but the laboratory test was negative. how much might we have trusted the laboratory? our ward became able to face covid thanks to major restructuration. the main concern was the oxygen administration that without proper adjustment might have soon overwhelmed our capacity. the renovation allowed us to administer continuous positive airway pressure (cpap) at the same time to all patients in the ward. a professional of emergency medicine came to refresh our knowledge of cpap and of the high flow nasal cannula (hfnc) system. plenty of meetings with the infectious disease specialists took place in order to ascertain what might have been the most effective approach to covid while the evidence for an effective treatment was all but nonexistent. while these arrangements took place the mood in the ward was strange. a number of people, especially nurses started crying unexpectedly and without obvious reason, while other team members endeavored to console them. the alternation of tears and laughter was uncontrolled and inexplicable. maybe this is the mood of soldiers waiting for an incoming battle. the military metaphor was supported by the small mustache of the chief of infectious disease that reminded me of a colonel in charge of a regiment, by the fact that i served in the military in that very town, and by the restructuration that made all of us feel like soldiers in a trench or as pilots ready for an urgent and dangerous mission. finally, the first real covid patients arrived. the first ones were visitors from other places (torino, savigliano). maybe that the invisible barrier isolating cuneo from the rest of the world was still working. vain hope! the citizens of cuneo got sick as well! the majority were older individuals who died in a few days. but even young people were affected by the virus. i remember a forty-year old man who required artificial ventilation and happily survived. and even a nurse of our hospital in her twenties contracted the disease in those initial days. the hospital looked more and more as a field hospital in the course of a battle. there were no regular working schedules. our duty was to continue towork day and night with as few pauses as possible. in the very first night we had three admissions and two deaths. no time to rest. bury the dead and care for more wounded! as soldiers we were asked to wear a protective uniform that made our movement all but more difficult. an anti-infectious gown made the heat almost unbearable. waterproof eyeglasses became immediately clouded because of the protective mask. clouded glasses and presbyopia hindered the performance of any procedure, such as drawing arterial blood gases. in lieu of the glasses we welcomed that visor that made us look like gardeners mowing the grass believe it or not, but the progression of the epidemics was also associated with heartening and rewarding experiences. our nurse manager was a middle age mother of three teenagers married to a high school teacher. the whole family was very fond of mountaineering, a hobby favored by the geography of our area. let’s call her lucia. she was very proud of how she had been able to balance her family and professional life. her office walls were literally wallpapered by pictures of her family on the top of mountains. “lucia; why you are not out mountain climbing with your family in this wonderful sunday” i asked surprised to find her at work on a holiday. her face was made ten year younger by a smile that expressed a newly found peace: “doctor, my family and i discovered that now our mountains, our adventures are here in the hospital. all our hiking plans have been tabled until the end of the pandemic. and i don’t want for you to feel sorry about us. peter (her husband) and i called a family meeting two nights ago. “children i said your father and i talked it over last night. we are endowed with professions of services to the sick, to the adolescents and their crises. this tragedy is a renewed call for our services. my patients need my time, his students need dad’s effort so that they will survive as unscarred as possible this epidemic and won’t be left behind in their learning. we ask you to be patient with us if we will spend long hours working. it is time to show to god our gratitude for our riches.” the children asked what they could do to help. one volunteered in a food line and the others to take care of the immigrants that live in the tent camp at the outskirts of the city and will be the most vulnerable to the economic consequences of the pandemic. lucia spent 18 hours in the ward every day: from 7 to 1 in the morning. she received no extra pay for her dedication to solve timely all the challenges that accrued during the day and that became more and more serious each [page 12] [qualitative research in medicine & healthcare 2021; 5:9688] article no nco mm er cia l u se on ly day. she kept working as she tested positive for covid and fortunately she survived the infection without major illness. she even joked when her husband was admitted to the hospital: “i felt particularly privileged! i am the only wife who can visit her sick spouse!” at that time parental visits had been strictly prohibited. she behaved as an ideal commander in chief should behave. she led her team by role modeling, not by commandments. lucia did not ask her staff for any extra work but everybody committed to longer hours. a young man just graduated from nursing school stated: “i have never been so proud of my profession! indeed, until the epidemics i had the impression to work with disenchanted people trying to conclude with the least effort their turn in the hospital to go back to their lives. now i discovered that our life is here and i would not choose a different profession for anything in the world.” the example set by lucia trickled down to the whole hospital personnel, including the physicians. when the mother of one of our colleagues died of unrelated causes and she needed to spend a few days home, we almost competed with each other to take over her duties. she thanked us crying: “the death of mother in the middle of the epidemic allowed me to discover an unsuspected reserve of human solidarity, that may sprout only from a love that remained concealed until the covid infection permitted its explosion!” indeed my colleague stated the most important and lasting lesson i learned from the pandemic. it was a twopronged lesson. first, i did learn that during an emergency one manager can count on a reserve of human solidarity in wait to be exploited. second, i learned that an emergency allows a person to manifest the best of him/herself, that is an unsuspected capacity of love. as a religious person i could not help feeling that my coworkers had transfigured in front of my eyes as jesus had done in front peter john and james. i learned to look at the whole person inside the momentaneous appearance, and i hope this vision will accompany me for the rest of my life. the phone calls with the patients’ relatives were at the meantime heartbreaking and highly rewarding. they called us heroes and saints and expected from us miracles, as if it were dependent from us to be able to cure their dying parents or grandparents. but how can one explain that there is no hope, that the loved one will die? the situation kept becoming more and more chaotic. at the peak of the infection our 600 bed hospital hosted 140 covid patients. part of the emergency room and of the recovery room became auxiliary intensive care units. even with these arrangements the intensive care beds became insufficient and we became compelled to decide whom we might have helped to survive and whom we might have let die. the department of health mandated that ventilators in short supply be not assigned to individuals 75 and over. it was a reasonable provision because life expectancy declines with age and so the ventilation of younger patients would have been more cost effective, i.e. would have saved more years of life. also the disease became more aggressive in the aged who were less salvageable even with artificial ventilation. yet this decision was repulsive to our consciousness of caregivers. since medical school we were taught that justice is a basic principle of medical ethics and accordingly it would have been unethical to limit a patients’ treatment based on age. also we know from experience how difficult it is to estimate a person life expectancy and for a fact some ninety year old have a more prolonged life expectancy than a forty year old. last but not least it was difficult to deliver to a sick person the message: “we would have the means to save your life but we can’t use them as you are too old to survive.” fortunately, some patients make the decision simpler. an 80 year-old family physician in respiratory failure told us “when i started to practice medicine the respirators were not available and i promised myself that i would have not allowed anybody to keep me alive with a machine! colleague, please give me some morphine to relieve my shortness of breath and allow me to go in peace!” others made it all but impossible, like the 76 year-old engineer who pleaded with us to keep him alive until the birth of his first grandchild! he and his family cursed us when we refused life-saving mechanic ventilation and threatened us with a lawsuit that so far has not materialized. it is difficult to find a lesson, if any, in being compelled to take actions contrary to our ethical principles. it would be unforgivable to dispute the principles themselves. it is realistic instead to honestly recognize that during an emergency the application of the principles is disputable. we know that similar decisions are taken every day in a field hospital during a battle or a major earthquake. we chose a profession that does not allow us to skirt similar decisions. in retrospective it may sound like a minor inconvenience, yet i do remember as a major source of frustration all the safety procedures that took so much of our times. it felt like we spent the best part of our days washing our hands, washing them again every time the gloves broke, in delivering mutual advice on how to wear correctly the gown or following the cumbersome disinfection procedures at the exit from each room. surgeons have to do it every time they enter the operating room, that is three or four times a day for three or four days a week. we were compelled to do it at least twenty times a day and every day. it was counterintuitive to think that adherence to guidelines might have been more important than to readjust an endotracheal tube in a patient in respiratory distress. we had to remind us over and over that delay of action might have represented the best course of action. march 15th, 2020. a new chapter in my history of coronavirus. while i was receiving the report of a colleague who had been on call that night, suddenly i started perspiring and felt lightheaded. i could not stand up. i had [qualitative research in medicine & healthcare 2021; 5:9688] [page 13] medicine at the end of the world no nco mm er cia l u se on ly all symptoms of a vasovagal pre-syncope and a nurse got scared. everything resolved in a couple of minutes. i imputed my malaise to anxiety. my temperature was just 98.9f and i felt reassured. after my shift i took a shower at home and started shivering. something was definitely wrong. in the afternoon my temperature was 101.9 f. my spouse and i agreed i should isolate myself in the loft of our house where there was a bed and a private bath. for a few days i had low grade fever that abated with paracetamol, and general malaise. it was time anyway to take a coronavirus test so, i joined a line of other health professionals waiting to be tested. one more remembrance of the military service when everybody waited in line for being vaccinated. among them i did recognize one of my dearest friends with my same symptoms, a service chief in complete suit and tie (i could not help thinking of dante recognizing caesar fully armed in the antechamber of hell), and a nurse of our ward. when my test turned out negative a number of well-meaning friends sent me their felicitations. but by then i felt sure i was infected, as fever and fatigue did not abate anymore. when the fever reached and stayed at 103f despite all interventions i called the colonel like chief of infectious diseases and he ordered that i be admitted to the hospital. i grabbed the bag packed by my spouse and away i went leaving two women in tear as if i were a mountain soldier leaving for the russian campaign of world war ii. i was admitted to an isolation room. a chest radiograph was negative for pneumonia, and the test was still negative, but i could not share my friends’ joyful relief. i knew i had something very serious. the negative test was not at all a reason for celebrating. it might have prevented the beginning of therapy with tocilizumab and hydroxychloroquine, drugs that at the time appeared promising. eventually the ct of the chest showed bilateral pneumonia. i needed to be treated. after the first administration of tocilizumab the fever waned away! fantastic. i knew i would have recovered. my enthusiasm was short lived however as many different ominous signs and symptoms had appeared despite the temporary abatement of the fever. i felt unable to eat, an experience all but unknown to me. indeed, i had been overweight for most of my adult life. and the taste of every grub turned to be salty and bitter. take the case of coffee. i always liked my coffee unsweetened, but now i would have not been able to drink it without plenty of sugar. the second administration of tocilizumab did not alter my anorexia and fatigue. indeed as a physician i should have known better and i learned to treasure this new lesson. the course of each disease is to some extent unpredictable because we never know how individual organisms react to the well known pathogen causing the disease. and that is particularly true when we deal with a new pathogen, as it was my case. the disappearance of fever may indicate the beginning of healing, but it may also indicate the loss of bodily defenses and the approaching of death. on the 24th of march the fever came back with a vengeance, but, even more worrisome, i felt short of breath. the oxygen saturation had dropped to 87%! as a specialist in respiratory disease i knew very well what that meant: cpap if i wanted to stay alive. i started wearing immediately mask and nasal cannulas. the following morning a good friend, a man of few words and strong sentiments, came to see me and made a grimace. he drew my arterial blood gases and after reading the results told me: “steve: we have to transfer you to urgent medicine” that meant a journey in the ambulance to the other side of the river stura, where urgent medicine was located. waiting for the ambulance i started cpap treatment. i knew the urgent medicine department very well, as i had worked there for ten years and i knew i would have been among friends. i felt a lot of comfort in being surrounded by my previous colleagues. i was only able to see the portion of their face left uncovered by mask and hood. but i recognized their voices, their demeanor, as a dog recognizes the master from his smell. a special surprise occurred when a very authoritative colleague, that in the past had treated me with some condescendence now showed the care of an affectionate brother. with a painless procedure he inserted an intraarterial cannula that prevented the pain of repeated punctures. the feeling of solidarity i had experienced in the previous ward was reproduced in urgent care. i could not help feeling a member of a well-functioning family animated by love toward a common good. i wish to add the description of a particular experience, that some people may find irrelevant but for me represented the discovery of beauty. as a middle aged straight man i acknowledge the physical attractiveness of women. in the ward i found all female nurses and volunteers working equally attractive. i could see only their eyes, but i did not need to see anything else to appreciate their beauty. the eyes communicate everything, speak, smile, express sadness and anger. through the eyes i could appreciate the inner beauty of each human being. once more, thanks to the mask, i experienced the transfiguration of jesus. i doubt i would have tolerated the cpap torture without the support of my new sisters and brothers. the headset was noisy but more tolerable than i had predicted, if one is not claustrophobic. the pronation, instead, was barely tolerable. i was lying down on my belly six hours each day and the helmet compelled me to stretch my neck in hyper-lordosis, a neck normally as stiff as a glass tube due to cervical arthrosis. but i was comforted because my arterial blood gases were improving consistently thanks to cpap. each time the new reading of the blood gases showed improvement the members of the team celebrated with me as if i had just passed a difficult exam. [page 14] [qualitative research in medicine & healthcare 2021; 5:9688] article no nco mm er cia l u se on ly after three days the headset was substituted with a more comfortable full face mask and i was allowed to lie on my side, rather than on my belly. i had not slept for four days, kept awake by the ongoing noise and lights in the corridor. nor did i eat. the benign scolding of my friends because i only tasted few teaspoons of pudding and yogurt did not help. i had no way to try solid food. my stomach felt locked up. as my respiratory condition was improving, my appetite was coming back and i felt more energetic. the threat of imminent death was fading. i was experiencing was is called the “lazarus syndrome” that is the recovery from death5-6 so named from jesus’ friend lazarus that jesus had resurrected from the dead. i realized that i needed urgently to find out who i really was. i might have been nothing more than a casual aggregate of cells and molecules destined to become undone upon my death. alternatively, my life might have had a unique and standing meaning, something able to survive my corporal death. i had no choice but to chose the second hypothesis, based on the way i had lived so far. i had lived my personal history, my professional activity, my relationships as a relay i had to convey to another runner waiting for me at the end of my life. the experiences i had treasured may survive my brain and may heart as long as they were transmitted by unconditional love. i came to the realization that love can only be unconditional to be love, and as such it must be indestructible. though i did not know whether i was able of unconditional love, that ancient greeks called agape, i knew that my lifelong aspiration, underlying all decisions and all actions was to be loved and to love unconditionally. in this process i was helped by many current friends and also by an erstwhile friend i had not seen in many years. i am talking about dante alighieri and his commedia! in particular i repeated more and more the address of dante to his old teacher brunetto latini. he thanked brunetto for having taught to him in every moment of his tutoring: “come l’uom s’eterna” (how the human person may learn to live in eternity). dante kept whispering in my ear: “look, we are more than biology; we are endowed with an eternal soul” when the spectacle of so many untimely deaths had drained any hope from me. at this pivotal moment i did realize that even if cure is out of reach, healing is always possible. learning to heal is the highest achievement of a health professional. i considered a major victory to be weaned from cpap. now i was able again to sleep on my own. the insomnia persisted and i begged my colleagues for an early discharge, to no avail. i am glad now that my friends and my own spouse refused to oblige my impatience and to compromise my outcome. this was also a useful experience to share with my patients when they insist to be discharged prematurely. finally, i was weaned from oxygen, and started eating. my first full meal included sausage and polenta and i felt as if i were eating at the prestigious and expensive restaurant gualtiero marchesi in milan. and on april 2nd the ambulance carried me home, twenty lbs. lighter than on admission. my teenage daughter did not use many words to welcome me: “i am happy you are home”, but her eyes meant much more than this, they expressed that unconditional love i was yearning for. and thanks to my disease i learned to read eyes! like marcel proust has described in many occasions the eyes reveal the wholeness of the person that keeps becoming richer from life experience and that survives to the ongoing mutations of our external form. i dare to say that the eyes are the gate to eternity. discussion and conclusions my personal and professional lives are as intertwined as the two helical chains of the dna. or at least i love to believe this is the case. it would be futile to try to separate the influences this major crisis had over the different dimensions of my living experience. i know i will keep imprinted in me as long as i live, or at least as long as i am in control of my consciousness, two messages, that have widened my scope of human potential. there is a major reserve of solidarity within most people, and this resource is largely untapped until a major crisis compels us to work together. to exploit this resource a leader must learn to be a role model for his/her followers. i mentioned as an example lucia, the nurse manager of our ward who spent long uncompensated hours at work. stress, sleep and food deprivation did not seem to influence her dedication, and perhaps more important they highlighted her pride to be able to serve. with her example she elicited a kind of joyful competition to serve among staff and physicians. it is important to highlight that the support of her family was paramount to lucia’s endurance. together with her spouse and her children she has been able to make of the care of the sick a family project that for longer than a year took the place of their mountain excursions. one may object that the majority of workers could not count on such a supportive family. still most of them appeared inspired by the example of the leader to make of the emergency a family affair. i would not be surprised to learn that this crisis had brought more family lives together than it had disrupted. this lesson is particularly relevant to our times when the figure of the officer who leads his soldiers in a battle and faces first the enemy fire is all but waned. today a leader must be a master of technology. as such he/she may not be prepared to face a crisis of the size of the covid epidemics. technology would be of no use unless there are individuals willing to risk their well being and their very life in order of delivering life-saving technology. the discovery of a vaccine or an antivirus will save lives only as long as there are lives left to be saved! like many of my colleagues i discovered in myself an unexpected reserve of energy that allowed me to work long hours and to help without hesitation a colleague in [qualitative research in medicine & healthcare 2021; 5:9688] [page 15] medicine at the end of the world no nco mm er cia l u se on ly need. never would i have fathomed to be able to overcome any form of burn out ten years ago when i left my position in urgent medicine because of a hint of burn out. but then i had the leisure to choose what kind of professional activity was more congruous with my personality and with my family life. as i mentioned i was fed up with respiratory technology and with the deaths associated with urgent care. i was longing for the personal interaction with each patient that my beloved father had enjoyed. i was longing to exchange smiles and conversation with patients and staff. i was also longing for enlarge my scope of medicine that in urgent care had been largely limited to the management of machines and numbers. the covid emergency had all but removed this leisure from my scope. my ability to keep seriously ill people alive was required and endowed me with a mission that could not be delayed nor tempered with. paradoxically, the lack of choice enabled me to be a physician to my best. the second message concerns healing and is relevant to all people, not just the health professionals. mike clees, a british comedian, declared: “life is a sexually transmitted terminal disease.” this statement rung very true to me as i was facing imminent death. as a physician i have been trained to consider the cure of the disease my primary role. of course i strived to provide compassionate care to the suffering and the dying; i did cry with the children and the spouses of some of the dead and i went to many funerals. but never before did i feel it was my duty to make sense of death. indeed, i felt that going there might have been an unwarranted intrusion into the patients’ intimacy. at the beginning of the pandemic, when the dead were being discharged unnamed into common tombs, the idea to invest my time in finding the meaning of death appeared nothing less than bizarre. my limited resources should all have been devoted to managing patient and fighting death. it took my own flirtation with death to realize that if death was the ultimate enemy of our humanity we are all doomed as death in unavoidable. the only way to defeat death is to come to term with it, that is to find a sense to our life, and this process is what we call healing.7 in this perspective, while cure is occasionally achievable healing is always achievable and as such it should be the most realistic object of all medical interventions. health professionals are in a privileged position to foster healing as many of the dying patients ask their caregiver to accompany them to the threshold of death. having faced death myself i could act as the “wounded healer”4 described by jung, that is a credible healer,8 one who knows what he is talking about. jung himself represented jesus as a wounded healer, as he asked from his followers nothing more of what he himself had undergone. i already declared myself as a christian of roman catholic persuasion, but i would find it repulsive to exploit a patient’s anguish to impose my faith on somebody else. instead i found this approach very effective: i hold my patient’s hand and say, “think of death in this way. if you have a single day to visit rome, you have two choices: you may get out of the train station and try to pack as many monuments as possible. in the evening you will find yourself extremely tired and probably will have forgotten most of your visit. or you could go on the top of a hill (gianicolo, trinità dei monti) from where you can embrace in a look the whole city and decide which monuments you really care to see. then your visit will be meaningful and your impression lasting. think of proximity of death as that hill that allows you to embrace all of your life and select the moments that have been more meaningful for you and your loved one. from there you can make a distillate of your life. an extract of bulgarian roses where each drop contains the essence of thousand petals withered century ago.” of course, every person can and should be a healer, but a health professional who has faced death himself is endowed with a unique credibility, because of his scientific knowledge and of his personal experience. i cannot overrate the discovery of healing both in my personal and professional life. through healing there are not personal defeats, as any experience perceived as a defeat my be turned into a victory. and the scope of my practice has changed: i will be able to accompany each one of my incurable patients to the threshold of death and thanks to the protective gears that concealed most of the face and the body of the caregivers, i perfectioned my ability to read eyes. that was also a new experience. in a certain way i felt like the apostles witnessing the transfiguration of jesus on mount tabor. i learned to discover the inner beauty of every souls irrespective of whether the host of that soul is young, old, toll, short, black or white. and i discovered the unconditional love of my daughter as i went back home! references 1. fauci as, lane hc, redfield rr. covid-19 navigating the uncharted. n engl j med. 2020;382:1268-9. 2. firew t, sano ed, lee jw, et al. protecting the front line: a cross-sectional survey analysis of the occupational factors contributing to healthcare workers' infection and psychological distress during the covid-19 pandemic in the usa. bmj open. 2020;10:e042752. 3. frank al. on becoming a doctor. am j med. 2019; 132:1361. 4. broyard, anatole. intoxicated by my illness: and other writings on life and death. fawcett columbine, 1992. 5. brant-zawadzki m. the lazarus syndrome: the ethics of evidence-based versus experience-based medicine. radiology 2012;263:629-32. 6. hall fm. the lazarus syndrome and the ethics of evidencebased versus experience-based medicine. radiology 2012;265:976; author reply 977. 7. byock ir. the nature of suffering and the nature of opportunity at the end of life. clin geriatr med 1996;12:237-52. 8. gonzales m, melton l. the wounded healer. j adv pract oncol 2017;8:453-5. [page 16] [qualitative research in medicine & healthcare 2021; 5:9688] article no nco mm er cia l u se on ly layout 1 introduction yanos, roe and lysaker1 proposed a concept termed ‘illness identity’ based on the research findings on the influence of the experience and diagnosis of mental illness. illness identity refers to ‘the set of roles and attitudes that a person has developed about him or herself in relation to his or her understanding of mental illness’ (p. 74). thus, it is proposed that individuals do not merely experience symptoms of mental illness but also interpret their experience of the illness. this concept is applied to cases in which an individual has decided to characterise his/her experiences, which might be regarded as psychiatric symptoms by a mental health professional, as at least partly caused by mental illness. as such, the concept is not applied to cases in which an individual has experiences which might be described as symptoms of mental illness but does not consider himself / herself ill. the concept of ‘illness identity’ was proposed as an alternative to earlier concepts such as ‘engulfment’.2 whilst ‘engulfment’ refers to a person’s self-concept and behaviour becoming increasingly organised around the psychiatric patient role, ‘illness identity’ allows for the multiple ways in which persons might make sense of having mental illness. thus, ‘illness identity’ includes, for example, interpretations of having mental illness which do not seem to fit the patient role, such as ‘empowered’ identities.3,4 in the present study, as in the study by yanos et al.,1 ‘identity’ refers to i) the social categories which an individual uses to describe himself/herself and ii) the social categories which others use to describe the individual.5 it has been well documented that psychiatric diagnosis and experiences of mental illness can significantly influence one’s identity.6 a meta-synthesis of qualitative studies on the experience of psychosis revealed that whereas people experienced losses of self-esteem, self-identity and the sense of having a coherent self at the early stage of psychosis, once recovery was underway, they regained a sense of having a self and rebuilt identity and self-esteem, with the ability to regain identity by asserting a unique individual identity.7 reviewing the existing empirical literature, yanos et al.1 revealed the impact of illness identity on the course and recovery from severe mental illness; illness identity can be detrimental to recovery and impacts one’s hope and self-esteem negatively. however, although a large body of study has investigated the impact of illness identity on people with mental health problems, little is known a qualitative study of illness identity: schizophrenia and depression namino ottewell school of social sciences, waseda university, tokyo, japan abstract illness identity refers to the interpretation of having mental illness in persons who regard themselves as mentally ill. illness identity can impact people diagnosed with mental illness negatively. however, little is known about the background of illness identity. this study aimed to investigate the process whereby mental health service users accept their diagnosis and develop an illness identity and to compare the processes between schizophrenia and depression. twenty persons with schizophrenia and depression were interviewed, and the data were analysed using grounded theory approach. the major findings were as follows: i) while those with schizophrenia were shocked by their diagnosis and took time to accept it, this was not true for those with depression; ii) for participants with depression, it was relatively easy to accept their diagnosis, as they thought that depression was a normal illness; participants with schizophrenia needed to learn about their illness, know the efficacy of psychiatric medication and reduce their prejudice against mental illness to accept their diagnosis; and iii) participants’ illness identity encompassed sickness and normality with sickness being related to taking psychiatric medication and normality being associated with having regular work, acting as other people do or living in the community. these findings suggest the influence of social attitudes to each illness on illness identity and the complex nature of illness identity. correspondence: namino ottewell, school of social sciences, waseda university 1-6-1, nishiwaseda, shinjyuku-ku, tokyo 1698050, japan. tel.: +81.3.3208.0545. e-mail: ottewelln@ml1.net key words: illness identity; mental illness; depression; schizophrenia. conflict of interest: the author declares no potential conflict of interest. funding: none. received for publication: 16 march 2018. revision received: 9 august 2018. accepted for publication: 9 august 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright n. ottewell, 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:84-93 doi:10.4081/qrmh.2018.7420 [page 84] [qualitative research in medicine & healthcare 2018; 2:7420] qualitative research in medicine & healthcare 2018; volume 2:84-93 no nco mm er cia l u se on ly about the process whereby illness identity develops. it is important to investigate the process, because by doing that, it is possible for us to clarify the background of illness identity. furthermore, understanding the process will also provide us with a more comprehensive picture of mental illness experience and influences of mental illness and psychiatric diagnosis on one’s identity. the present study, therefore, aimed to examine the process whereby people with psychiatric diagnosis develop illness identity. in doing this, the present study also investigated how they accepted their psychiatric diagnosis, since it is necessary for one to accept that they have a mental illness in order to develop illness identity. acceptance was defined as an individual coming to consider that their somatic and/or psychological changes have been caused by mental health problems. while mental illness includes various categories, this study focussed upon two specific illnesses, schizophrenia and depression. this is firstly because these two illnesses are perceived differently by lay people, with schizophrenia being more stigmatised.8,9 the second reason is that the studies on the impact of psychiatric diagnosis and experiences of mental illness on one’s identity have mainly focussed on people with psychosis, and the impact on the identity of people with depression has been relatively unexamined. by comparing the process whereby persons diagnosed with schizophrenia develop their illness identity with that of persons with depression, this study analyses the affinities and differences in the processes whereby they develop their illness identity between these two illnesses. materials and methods participants the data for this study were derived from 20 interviews conducted primarily to explore the experiences with stigma among people with mental illness. after obtaining the university’s ethical approval, i recruited participants from community activity support centres for psychiatric patients and psychiatric hospitals in tokyo, japan. the inclusion criteria were as follows: i) people diagnosed with schizophrenia or depression by health professionals; ii) people over the age of 20 years. the following exclusion criteria were applied: i) people experiencing acute symptoms of mental illness; ii) people experiencing dementia, intellectual disability or substance abuse; iii) people having problems with interactions with an interviewer. a total of 20 people, including 10 men and 10 women, participated in this study, twelve of whom had been diagnosed with schizophrenia and eight with depression. the average duration of treatment was 14 years (ranging from 1-40 years). the age and employment status of participants are presented in table 1. procedure interviews were semi-structured and face-to-face, and each interview lasted between 25 and 50 minutes. while the majority of the questions were related to stigma against mental illness, participants were also asked about their feelings and thoughts concerning their psychiatric diagnosis. the questions regarding their feelings and thoughts about diagnosis included the following: i) when and how were you first diagnosed with mental illness? ii) how do (or did) you feel about your diagnosis? iii) if you were not told your diagnosis by your doctor initially, when and how did you learn about your diagnosis and how did you feel about it? iv) do you find it easy or difficult to mention your diagnosis to others? v) do you think if your diagnosis were different (for example, if it were not schizophrenia but depression), it would be easier to disclose it to others? and vi) do you accept your diagnosis? if so, [qualitative research in medicine & healthcare 2018; 2:7420] [page 85] article table 1. age and employment status of participants. age 20-25 1 26-34 11 35-44 5 45-54 1 55+ 2 employment status job training 5 sheltered job 1 special employment positions for people with disabilities 4 employed (full time) 5 employed (part time) 1 looking after home and family 1 unemployed 3 no nco mm er cia l u se on ly how did you accept it? participants were also asked to talk about their experiences of receiving and accepting psychiatric diagnosis freely. all participants provided a written informed consent form prior to an interview and agreed to their interviews being recorded. data analysis i analysed interview data by employing the grounded theory approach.10 i transcribed the recording of each interview verbatim, and divided the transcripts into segments using natural breaks as cut-off points to code them. codes and categories were reviewed as the results of the analysis were accumulated, following which they were accepted, modified, discarded or replaced with new ones. i examined relationships between categories by comparing them with one interview case, contrasting them across other cases as well as by reviewing analysis memoranda. clarifying these relationships led to the emergence of a core category, namely ‘living with the self that has changed because of the mental illness itself and because of the psychiatric diagnosis label’. in the process of the analysis, comments and advice from three other researchers were reflected in order to increase validity of the analysis. the interviews were designed primarily to explore stigma experiences among participants, and as such, this core category is mainly related to participants’ experiences after they accepted their diagnosis (e.g. how they concealed their condition). however, for the purpose of this study, the sections below focus on how they came to accept their diagnosis and develop an illness identity. results receiving a psychiatric diagnosis the participants’ reports indicated two broad patterns in terms of how they came to be diagnosed as mentally ill. with regards to the first one, participants noticed recurrent changes in themselves, including insomnia, suicidal thoughts and/or hearing voices. they thought that these changes might be caused by mental health problems and sought a diagnosis. the second pattern involved other people (in most cases, participants’ families) noticing changes in participants and taking them to a doctor. in this case, even if participants had been aware of the changes, which had been mostly cognitive changes such as auditory hallucinations and delusions, before their first visit to hospital, most of them had not thought of these changes as psychiatric symptoms. in most cases of the second pattern, participants had not been informed of their diagnosis for several years (ranging from 2-11 years), although their families were informed of it. participants were usually unaware of their diagnosis while receiving psychiatric treatment. apart from one, these participants first became aware of their diagnosis when they saw their patient record or application forms for benefits. although they stated that they had been shocked at the discovery of their diagnosis, no participants expressed dissatisfaction with their family for not having told them. whilst all eight participants with depression went to hospital of their own free will, the majority with schizophrenia (66% or 8/12) were taken to hospital by other people for the initial consultation. there was a marked contrast in the reaction to their diagnosis between those with depression and those with schizophrenia, with the former generally being convinced and the latter being puzzled or shocked. two participants were puzzled because they knew nothing about schizophrenia, whereas other participants were shocked because they regarded it as a serious illness or thought it was related to violence. one of the participants (anna) stated, ‘i was shocked when my doctor told me i had schizophrenia, not depression, because i thought that schizophrenia was much worse than depression and incurable’. all participants, except for three, were reluctant to disclose their diagnosis to others. the majority of participants with schizophrenia felt that it would be easier to disclose their condition if it were not schizophrenia but depression, as they thought that depression was well-regarded among lay people, whereas schizophrenia was not understood properly and related to images of madness or violence. participants with depression shared this view, stating that they would never disclose their diagnosis if it were not depression but schizophrenia. in terms of the diagnosis of depression, none of the participants with depression considered that their diagnosis itself mattered. for all the participants with depression, except for one, it was the fact that depression was a mental illness which made them consider whether they should disclose it to others, because they were aware that people were often prejudiced against people with mental illness, regardless of their diagnosis. acceptance of diagnosis at the time of the interviews, all 20 participants believed that they did indeed have a mental illness. of the participants with depression, four stated that they had selfdiagnosed their condition before seeing a doctor. thus, receiving a psychiatric diagnosis probably implied a confirmation of their changes. three participants with depression were not certain of what their diagnosis would be, although all of them did not appear to have been puzzled by it. they often heard the word depression in the media, and more importantly, they agreed with the information about depression which they saw in the media. thus, they had already accepted that there was indeed an illness called depression even before receiving a formal diagnosis. one participant was not initially convinced by her diagnosis and thought that she had a borderline personality disorder because of her self-harming behaviour; however, she eventually came to think that she had depression. she (ruri) stated: [page 86] [qualitative research in medicine & healthcare 2018; 2:7420] article no nco mm er cia l u se on ly in the initial period when i began receiving treatment, i wondered if i was experiencing a personality disorder or depression. my doctor expressed that depressive symptoms could’ve been leading to self-injurious behaviour, but as the self-injuries were so frequent, i wanted to reduce them; thus, i asked for medication that would enable me to reduce self-injury. however, my condition didn’t improve, and so, it was eventually decided that receiving medication for depression would be better. i began taking ssri, and it really seemed to suit me. i became mentally stable, and my self-injuries also decreased. therefore, i thought that since ssri was effective, it must’ve been depression. her statement indicates that psychiatric medication played an important role in her acceptance of her diagnosis; she thought of the changes she was experiencing to be symptoms of depression, because ssri, a widely used antidepressant medication, worked for her. furthermore, in addition to the effectiveness of psychiatric medication, participants’ recognition of depression made it easier for them to accept their diagnoses. as mentioned above, participants shared the view that depression did not hold a very negative image in japan. takuya, who had been diagnosed with depression, described how mental illnesses were viewed in tokyo, after commenting on the intense stigma against mental illness in general in the countryside: in tokyo, it’s a given – it ’s not rare. there didn’t seem to be that bad of an image regarding things that you frequently hear about like depression and panic disorders. as might be expected this isn’t the case with schizophrenia: its image is different. but if a person is suffering from depression or a panic disorder, it’s my feeling that people would treat you as normal in tokyo. in his statement, takuya suggests that depression and panic disorders are normal illnesses, particularly in tokyo. he also situates schizophrenia in a different position from depression and panic disorders. as can be observed, he began the last sentence with the word but and went on to describing the normalization of depression and panic disorders; this indicates his belief that schizophrenia is different from depression and panic disorders in a negative sense, signifying that schizophrenia is not a normal illness. although what takuya mentioned is his understanding of the images of mental illnesses in tokyo and not all over japan, the differences between schizophrenia and some other well-known mental illnesses, particularly depression, was recognised by most participants; while having depression is considered normal, having schizophrenia is negatively deviant. for some participants, depression felt normal owing to the large number of patients with depression, as the number of patients with mood disorders, including depression, annually has been over one million since 2005 in japan.11 this meant to them that depression was a common illness that anyone could get. overall, participants found it easier to accept a diagnosis of depression because depression was indeed an illness but a normal illness according to them. furthermore, the statements of participants reflected a discourse concerning the relationship between depression and stress, which is widely believed in japan; if an individual is under enormous stress, he/she will get depressed.12 when being asked about the possible reasons for their onsets, participants with depression clearly expressed their views that they became depressed because they were under great stress. by doing this, they also implied that they were normal, because anyone could get depression if they were under high stress. in contrast, participants with schizophrenia, regardless of how they received information on their condition, needed some time to accept it. all of them rejected their diagnosis at first. they did so because, as mentioned in the previous section, they did not know about schizophrenia, or if they did, they rejected their diagnosis because they thought schizophrenia to be a serious illness or related to violence. for participants who did not know about schizophrenia, it did not make sense to be told by health professionals and their families that they were ill. they believed their experiences, such as someone speaking ill of them, to be true and that it was impossible for them to have a mental illness which brings delusions and hallucinations. for participants who did know about schizophrenia, schizophrenia was an illness from which other people suffer. they never thought that they might suffer from it. their rejection of their diagnosis also reflected their recognition, as mentioned earlier, that schizophrenia was not a normal illness. all participants with schizophrenia eventually accepted that they did have schizophrenia, but even after that, most of them maintained that having schizophrenia was negatively deviant. for them, whereas it was normal to suffer from depressed mood, anxiety or insomnia when under stress, it was far from normal to have delusions and hallucinations under any circumstances. when accepting their diagnosis, the majority of participants with schizophrenia found it helpful to read books about the subject to convince them that they did indeed have the illness. these people then noticed that what they had been experiencing, e.g. hearing voices, matched the symptoms of schizophrenia, which made them think that they might actually be suffering from it. kei described his experience below: when i was first hospitalised, other patients informed me about my illness. as i didn’t recognise i was ill, i went to the door and banged on it, saying, ‘get me out of here!’ at this point, other patients asked me various things including what i was thinking about. subsequently, i was told, ‘you are schizo [qualitative research in medicine & healthcare 2018; 2:7420] [page 87] article no nco mm er cia l u se on ly phrenic and if you take medication, you’ll be cured’, and i thought, ‘oh, really, that was what it was’; this explanation gradually became a reality for me. they also lent me books regarding the illness. i read them and thought, ‘oh, this is the type of illness it is.’ about three months after hospitalisation, i understood the type of illness i was suffering from. kei’s statement clearly shows a process whereby he accepted that he had schizophrenia: although he did not understand what was wrong with him at first, he gradually came to believe that he suffered from schizophrenia by listening to other patients’ explanations, realising that what they said was right, and studying about the illness in books. this pattern was seen in some other participants with schizophrenia as well. kei’s statement also reveals that other people played a significant role in his characterising his problems as schizophrenia, and that simultaneously, he also regarded his problems as mental illness himself. participants with schizophrenia also accepted their diagnosis by realising that psychiatric medication was effective in dealing with their problems. knowing that psychiatric medication reduced their symptoms, they came to think that what they had been experiencing might have been caused by mental illness. participants also had the opportunity to contact other people with mental afflictions once they had become patients themselves. although some participants had been prejudiced against this type of illness, particularly schizophrenia, which made it difficult for them to accept their diagnosis, through these experiences with other patients, they realised that not all psychiatric patients were as violent and unpredictable as they had thought them to be and found that there were many patients who were gentle, sensitive and well-functioning. thus, participants’ perception of people with mental illness changed, which helped to reduce their hesitation or sense of shame in regarding themselves as suffering from one. developing an illness identity the major characteristic in participants’ illness identity was the coexistence of sickness and normality; whilst participants thought that they were ill, they also thought that they were normal. this characteristic was shared between participants with schizophrenia and those with depression. normality consisted of their illness identity because it was one of their interpretations of having mental illness; in their thoughts, having mental illness did not necessarily mean becoming completely different from other people or losing a normal life. in terms of their recognition of being ill, it was notable that taking psychiatric medication was strongly related to their illness identity. participants stated: ‘i can’t live without psychiatric meds, so i’m ill (kana, depression)’, ‘i recognise i’m ill by taking medicine (momo, schizophrenia)’ and ‘i’m so ill that i have to rely on medicine. if i didn’t need medicine, i wouldn’t have the identification booklet’ [which are given to those with mental illness] (misa, depression). participants were generally positive about taking psychiatric medication, except one who was ambivalent about it – positive about improvement in symptoms but negative about side effects. the main reason why participants were positive about medication was that they felt that it was helpful in reducing symptoms and that they were not experiencing any troublesome side effects. although some participants stated that they had suffered from severe side effects such as sursumvergence before, it was no longer the case at the time of interview, since they were getting new medication which was unlikely to cause severe side effects; they had changed their medication with their doctor’s agreement. consequently, all participants could pass for normal unless they themselves revealed that they had been diagnosed with mental illness. none of them looked different from other people. some participants were reluctant to take medication at first, because they believed that ‘if you took medication, you’ve admitted you’re ill’ (riku, schizophrenia). in their recognition, taking or needing psychiatric medication meant being mentally ill. they were not concerned about the actual effects which psychiatric medication might bring to them physically and psychologically, but they were concerned about the connotations which psychiatric medication carried for them and other people, such as being considered sick and abnormal. although this is not what participants actually experienced, some participants stated that they knew some other people who took their psychiatric medication at work, while telling their colleagues and bosses that the medication was for physical illness, or who changed their medication to new ones which they did not need to take during the day, because they did not want to do so at work. participants who hesitated to take medication at first shared this concern that they would be thought of as mentally ill. however, at the time of interview, all participants were taking medication as suggested by their doctor. in participants’ characterisation of their experiences qua symptoms of mental illness, not only the fact of taking psychiatric medication itself but also the recognition of the efficacy of psychiatric medication played an important role. for example, tatsuya had been diagnosed with schizophrenia but denied having the illness and did not take medication suggested by his doctor at first. tatsuya did not want to take psychiatric medication because he thought, ‘i’m not like those with mental illness’. he thought of psychiatric medication as something which people with mental illness should take. as seen above, the connotations which psychiatric medication carried mattered to him. however, he realised later that the medication worked well in terms of reducing auditory hallucinations when taken properly. as such, he eventually felt that, ‘it may be true that i’ve been ill’. in other [page 88] [qualitative research in medicine & healthcare 2018; 2:7420] article no nco mm er cia l u se on ly words, takuya thought that what other people, including health professionals and his family, had told him was probably right, and that his problems had been caused by schizophrenia, which was treatable with psychiatric medication. conversely, participants also recognised the efficacy of psychiatric medication when they stopped taking it or reduced their dose, since they experienced a relapse or deterioration of symptoms. participants with schizophrenia, in particular, were careful about continuing to take medication, as they thought that they would have a relapse otherwise. other reasons for their recognition of being ill included having an identification booklet for those with mental illness. in japan, people with mental illness can apply for an identification booklet if they have difficulties in everyday life or social life because of their illness, with which they can receive preferential treatment such as reduction of taxes and fees for public transport. participants with the booklet stated, ‘i have the booklet, so i’m officially mentally ill’ (kana, depression) or ‘when people don’t understand i’m mentally ill, i show them the booklet so that they can understand i’m actually ill’ (misa, depression). their recognition of being ill was also associated with their viewing themselves as different from other people. those with schizophrenia tended to use the terms ‘normal people’, ‘the normal’ or ‘regular people’ when they meant people without mental illness, whereas those with depression were more likely to use the phrases ‘people not having mental illness’ or ‘people who have never had mental illness’. for example, masa, who was diagnosed with schizophrenia, stated: earlier, i thought it’d be unimaginable for me to go to work again; however, after going through several interviews, i could find work that could be done even though i had this illness. now, i’m receiving a salary and also paying taxes. i feel that i may have come closer to living the life of a normal person; this gives me immense happiness. his statement shows that he regards ‘the life of a normal person’ as having work, receiving salary and paying taxes. kae, who was diagnosed with depression, on the other hand, stated: it’s hard for me that my husband doesn’t understand that i’m ill, but at the same time, i think it’ll be impossible for those who have never had depression to understand that [how being depressed feels like]. in her statement, kae clearly expresses her recognition of her being ill, and yet she also thinks that maybe nothing can be done about her husband’s lack of understanding of her illness, as he has never been depressed. in contrast to masa, who used the word ‘a normal person’, kae uses the word ‘those who have never had depression’. as their descriptions of people without mental illness show, participants with schizophrenia seemed to feel more distant from those without the illness than those with depression. for participants, ‘being different from other people’ meant being unable to work as other people do or having experiences which other people would not have such as hearing voices or self-harming behaviour. however, all participants thought that they were also normal while simultaneously thinking they were ill. as stated in ‘acceptance of diagnosis’, participants understood depression as a normal illness. as such, participants with depression thought that they had an illness but that it was a normal illness and that they were normal in that sense. for instance, kaito (depression) stated, ‘it’s a brain illness, and it’s not different from other illnesses. in addition, for participants, a normal life generally meant having regular work. as such, it was understandable that participants with regular work, most of whom were those with depression, regarded them as normal. in contrast to participants with depression, participants with schizophrenia tended to use the words normal people and regular people to distinguish themselves from those without mental illness. however, participants with schizophrenia also recognised that they were ill but simultaneously normal and they were not different from those without mental illness. ken (schizophrenia), for example, stated that he did not have an image of himself as quite different from other people. at the time of interview, most participants with schizophrenia did not have regular work. therefore, they did not think of themselves as normal because they had work, as did many of participants with depression, but they regarded themselves as normal in the sense that they ‘act as other people do (not act strangely)’ or ‘live in the community and lead a life as other people do’. with respect to the factor, ‘acting as other people do’, the invisibility of their symptoms was key. participants with schizophrenia, in particular, regarded themselves as normal based on comparisons with their past selves. while they regarded their past selves, who had difficulties leading their everyday lives because of severe symptoms of mental illness, as far from normal, they regarded their present selves, who had recovered to a level that other people could not tell from the participants’ appearance or behaviour that they had mental illness, as normal. participants also compared themselves with people suffering from severe symptoms of mental illness. with the same logic as their comparison between past and present selves, they regarded themselves as normal compared to people having difficulties in leading their everyday lives because of severe symptoms of mental illness. meanwhile, ‘living in the community and leading a life as other people do’ meant that participants lived in normal places where other people lived, not in special places such as hospitals, and participated in activities during the day. all the participants lived at home, with their family or alone. these living environments could be one of the reasons for their recognition of being normal. furthermore, six of participants belonged to the community activity support centre, which they visited on all weekdays, and they [qualitative research in medicine & healthcare 2018; 2:7420] [page 89] article no nco mm er cia l u se on ly were not treated as patients there. at the centre, all the people, including the staff, used the word members and not patients. members were encouraged to think about what they want to do at the centre themselves and the staff paid respect to members’ voluntary thoughts and acts. this environment could also have contributed to their thought that they were normal. as mentioned above, one of the participants’ criteria of being normal was having regular employment. while participants without regular employment thought themselves as normal based on some other criteria, this did not mean that they had abandoned hope about obtaining work. all the participants without regular employment at the time of interview thought that they would like to apply for regular employment in future. some participants intended to apply for a job without disclosing their illness, while others wished to apply for the special employment positions for people with disabilities. in japan, organisations with 45.5 or more employees (one part-time employee is counted as 0.5 person) are legally obliged to employ people with disabilities, including those with mental illness, as 2.2% of their workforce. organisations with this obligation, therefore, recruit people with disabilities. the number of people with mental illnesses who were newly employed in the special employment positions has been rapidly increasing (from 14,555 in 2010 to 41,367 in 2016),13 and participants were aware of this. because of this situation, participants thought that they would eventually be able to have a job in the special employment positions for people with disabilities even if they could not obtain normal work, which meant work which people without mental illness do. regardless of their diagnosis, participants’ recognition of being normal shared this characteristic: they are normal as long as they are on medication, but they are sick given that they have to take medication to be normal. for participants with schizophrenia, in particular, it was almost obligatory to take medication. however, the obligation did not come from others but from themselves. they thought that they had to take medication to stay normal. in participants’ recognition, they were not entirely different from other people except that they had to take medication to be normal. as such, psychiatric medication was related both to participants’ recognition of being sick and to their recognition of being normal. discussion this study examined the process whereby persons with schizophrenia and depression accept their diagnosis and develop illness identity. with respect to acceptance of their diagnosis, participants with depression seemed to have agreed with their diagnosis relatively easily because they understood that depression was a common and treatable illness that people did not have very negative feelings about. participants also thought that depression was a normal illness, which could have led to their acceptance of their diagnosis and their recognition of being normal. in contrast, participants with schizophrenia found it difficult to accept their diagnosis, since they did not have knowledge about the illness or they had negative perceptions of it. they were also aware that people had distorted views on the affliction. these findings indicate that social attitudes to mental illness affect an individual’s thoughts about their condition. in japan, the old term for schizophrenia ‘seishin bunretsu byô’ (mind-split-disease) was renamed to ‘tôgô shitchô shô’ (integration disorder) in 2002, as it was not conceptually appropriate and gave a negative impression.14,15 although research has shown that the new term gave a more positive impression than the old one to the general public,16,17 the study findings suggest that negative connotations continue to be attached to schizophrenia. in fact, in the present study, both participants who received their diagnosis before the renaming and after found it difficult to accept. although this phenomenon is not unique to japan,18,19considering that the japanese general public were found to be more prejudiced against schizophrenia than those in other countries,8,20,21 it may be more difficult for japanese people with schizophrenia to come to terms with their diagnosis. for most participants with schizophrenia, their families were the first people who were informed of their diagnoses. the main reason for this practice could be the psychiatrists’ concern that their patients might be shocked by the diagnosis. indeed, some participants stated that their families had been told by their doctor not to disclose the information for this reason. although many patients have been informed of their diagnosis of schizophrenia recently,22 the practice of not disclosing these results to patients appears to be a common practice in japan, particularly before the new term was introduced. according to nishimura,23 who conducted a survey on disclosure of psychiatric diagnosis to their patients amongst psychiatrists in japan, most of the contacted 1,000 psychiatrists refused to participate in the study stating that they ‘do not give a diagnosis to patients in our hospital’. although none of participants complained about the practice, this raises the issue of ethical and human rights which needs to be discussed. however, the problem concerning providing the patient with a diagnosis of schizophrenia is not limited to japan; research conducted in other countries showed that mental health professionals had concerns for the patient regarding giving a named diagnosis of schizophrenia and found it problematic, unproductive and harmful,24,25 indicating that the problem is of universal nature. participants thought themselves to be simultaneously sick and normal. their recognition of being sick was strongly related to their taking psychiatric medication, which meant that they regarded medicine taking as an act of sick people. furthermore, participants understood their illness in a biological manner, given that they believed that medication could reduce their problems or symptoms. the studies conducted in other cultures also found that [page 90] [qualitative research in medicine & healthcare 2018; 2:7420] article no nco mm er cia l u se on ly psychiatric medication implied more severe illness for people diagnosed with mental illness and facilitated or reinforced conceptualisation of one’s problems in terms of mental illness.26,27 tucker28 notes that biological understanding of mental illness functions as a way to move away from negative perceptions against any unspecified mental abnormality. whilst this may be true in an aspect, a large body of studies has revealed that this is not always the case. in fact, research has shown that people with a belief of biological aetiology of mental illness showed more stigmatising attitudes to people with mental illness than did people with a belief of psychosocial aetiology of mental illness.29-31 participants’ biological understanding of mental illness may reflect the fact that they were receiving psychiatric treatment. however, it is unknown whether they chose this type of treatment because they originally endorsed biological understanding or they have a biological understanding because they received psychiatric treatment. participants with depression accepted their diagnosis relatively easily probably because they believed that their depression had been caused by a psychosocial factor, namely stress. whereas yanos et al.1 note that illness identity can lead to detrimental consequences such as lower self-esteem and loss of hope, the findings of this study show that illness identity does not necessarily lead to negative results. participants’ illness identity did not lead only to negative consequences, because their illness identity encompassed two contradictory-looking elements, normality and sickness. in this sense, study participants were different from the clients of the programme of assertive community treatment (pact) programme described in estroff’s ethnographic study.32 in the case of pact clients, they thought themselves as sick or different from other people, and people around them also treated them as sick people. estroff notes that clients received a direct and indirect message that they were sick and never got well daily, and were simultaneously reminded of their defects and differentness through interactions with people without mental illness. it is possible that participants in this study also daily received messages such as you are sick and you are different from others, given that they were on psychiatric treatment. however, they did not look different from others, and they interacted with those without mental illness such as colleagues, friends and neighbours in their everyday lives. participants might have been reminded of their own deficits and differentness in comparison with people without mental illness daily in the interaction with them, but they also confirmed their normality in the interactions as they behaved normally, thought normally, and worked normally. goffman33 argues about the relationships and interactions between the normal and the stigmatised. people diagnosed with mental illness are often stigmatised,34,35 and in this sense, study participants can be regarded as the stigmatised. in fact, most of them experienced and perceived stigma because of their diagnoses, although this article did not deal with this topic in detail. goffman33 regards stigma as ‘an attribute that is deeply discrediting’ (p. 4), but what is really needed for stigmatisation is not attributes, but language of relationships; someone can be stigmatised in social interactions and attributes in themselves do not cause stigmatisation. participants were aware of the discredited nature of mental illness, particularly schizophrenia, while they were also aware that depression was less discredited and even regarded as a normal illness. their awareness partly explains the rejection of diagnosis of participants with schizophrenia and acceptance of diagnosis of participants with depression. participants ensured that they appeared normal in their everyday lives in order to avoid being stigmatised, and they knew that it was important for them to appear normal. this was one of the reasons why they adhered to medication. although it may sound contradictory, participants took medication to appear normal and to not be stigmatised, while being aware the negative connotations of psychiatric medication and how others could stigmatise them for taking medication. participants’ recognition of ‘being sick’ was both selflabelled and labelled by others. thoits36 argues that people are likely to label themselves as mentally unwell and seek professional help when they experience non-normative feelings which are persistent or recurrent and when they lack social support. others can help them think that it is not unusual to have those feelings by confirming that said feelings have understandable origins in objective conditions. however, she also notes that others can label people experiencing non-normative feelings as mentally unwell. thoits’ theory seems to be largely applicable to the experience of participants with depression. on the one hand, they thought that they were ill because of recurrent changes in themselves, including insomnia and suicidal thoughts. on the other hand, they thought that it was normal for them to have depression because they were under great stress, although this was rather influenced by the media than by those around them. labelling by others, in contrast, is largely applicable to the experiences of participants with schizophrenia. in scheff’s theory,37 when an individual’s deviance becomes a public issue, both this individual and those around him/her try to deal with the situation using stereotypes of mental illness, which they have learnt in everyday life since childhood, as a guide. when other people react to the deviance of this individual in this way, his/her unstructured rule-breaking tends to crystallise in conformity to these stereotypes. in the case of participants with schizophrenia, most were taken to a hospital by other people for their initial consultation, as other people thought the participants to be mentally ill because of their problems such as auditory hallucinations and delusions. these participants were also influenced by other people’s views in accepting that they were ill. however, their ‘unstructured rule-breaking’ did not crystallise, as scheff argues, but they learned [qualitative research in medicine & healthcare 2018; 2:7420] [page 91] article no nco mm er cia l u se on ly to appear normal. this can be partly explained the facts that they lived in normal environments and most others around them, including the staff of the community activity support centre, did not treat them as sick people. the present study defined acceptance of diagnosis as the process where an individual comes to consider that their somatic and/or psychological changes have been caused by mental health problems, which is similar to the idea of insight. however, research has indicated problems in this idea. tucker28 indicates that the idea of insight should be more diverse, as acceptance of a diagnosis is a complex process where individuals interpret mental illness and reconstruct the category. hamilton and roper38 criticise the notion of insight, stating that it reduces the dynamic of opinions to a contest between individual and professional opinion. furthermore, insight is problematic not only as a concept but from the perspective that recognising oneself as mentally ill can also lead to negative consequences such as self-stigma and lower satisfaction with life.39 the literature suggests that it is important to develop an identity as a person, not as a patient, when thinking about recovery.40 however, the findings of this study suggest that having insight or recognising oneself as mentally ill is not necessarily detrimental to those diagnosed with mental illness. this is in accordance with the findings of prior studies which showed that some individuals had expressed relief at having been given a diagnosis.19,41 in this study, participants thought that having mental illness did not necessarily mean becoming completely different from other people or losing a normal life, and they regarded themselves as normal, while simultaneously thinking of themselves as ill. although it is true that some participants with schizophrenia were shocked at their diagnosis and took time to accept it, this was mainly because they were prejudiced against the illness, thinking that, for example, those with schizophrenia were violent. it is also true that most participants concealed their diagnosis from others, not because they wanted to deny having a mental illness but because they wished to avoid being stigmatised. these results suggest that negative connotations of mental illness, namely stigma, rather than recognising themselves as mentally ill, affected participants. in fact, while research has shown that having insight can lead to negative consequences such as low self-esteem and quality of life,42 there is also evidence that rather than ‘insight’ itself impacts people diagnosed with mental illness negatively, other factors such as shame proneness and selfstigma mediate the associations of insight and negative consequences.43-45 another limitation of this study was that the participants were recruited from community activity support centres for psychiatric patients and psychiatric hospitals, which probably led to the exclusion of persons with mental health diagnoses who rejected their diagnoses or who did not wish to be involved with the mental health system. research has shown that persons with psychiatric diagnoses who do not regard themselves as mentally ill have their own interpretations regarding their issues, including ‘having a bad temper not an illness’,46 ‘family problems’ and ‘outbursts’.27 whilst the findings of the present study contribute to an understanding of illness identity in people who have accepted their psychiatric diagnoses, future research will need to investigate perspectives of people with mental health diagnoses who do not regard themselves as ill, since interpretation of mental illness varies. conclusions the present study described the process whereby mental health service users accept their diagnosis and develop an illness identity and compared the processes between schizophrenia and depression. one of the significant difference was that while those with schizophrenia were shocked by their diagnosis and took time to accept it, this was not true for those with depression. this difference reflected social images of schizophrenia as negatively deviant illness and depression normal illness. participants’ illness identity encompassed sickness and normality, with sickness being strongly related to taking psychiatric medication and normality being connected to having a regular job, acting as other people do or living in the community. taking psychiatric medication, however, was related both to participants’ recognition of being sick and to their recognition of being normal, in the sense that they thought that they were normal as long as they were on medication. whilst research on the lives of people diagnosed with mental illness mainly focuses on their sick side, the findings of the present study clearly reveal that recognition of being normal simultaneously exists in them. it should be important for people diagnosed with mental illness to have this recognition, even if it is partial recognition as in the case of the study participants, because this recognition will help them in a variety of ways, including sustaining self-esteem and keeping or expanding social networks. as we know little about the recognition of being normal in people diagnosed with mental illness, future research is needed to explore this topic further. references 1. yanos pt, roe d, lysaker ph. the impact of illness identity on recovery from severe mental illness. am j psychiatr rehab 2010;13:73-93. 2. lally sj. does being in here mean there is something wrong with me? schizophrenia bull 1989;15:253-65. 3. connell m, schweitzer r, king r. recovery from firstepisode psychosis: a dialogical perspective. bull menninger clin 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[qualitative research in medicine & healthcare 2018; 2:7420] [page 93] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2023; 7:11261] [page 41] introduction mental health professionals (mhps) provide important services for their clients, including preventive, remedial, and crisis counseling. mhps provide more than a listening ear as they help clients navigate a variety of issues. active listening is a fundamental skill that helps the mhp build rapport and be in the present with the client by being engaged and consciously hearing, effectively attending to the speaker’s message by using paraphrasing and reflection (rogers, 1951). active listening is therefore particularly vital for person-centered therapy approaches within the context of clinical mental health counseling. as bletscher & lee (2021, p. 151) write, active listening is “acknowledging others’ needs or showing care” in such a way that increases the understanding of another individual’s concerns. unfortunately, many mhps face challenges which may lead to burnout, and these challenges can be related to demands required by active listening (campbell et al., 2020). in turn, burnout leads to poorer client and provider outcomes, facilitating conditions for mhps to exit the profession (delgadillo et al., 2018). the covid-19 pandemic further exacerbated the strain on healthcare workers, including mhps (fischer et al., 2022). covid-19 caused massive layoffs, loss of healthcare insurance—often including mental healthcare coverage— “it’s real. it’s a thing:” mental health counselors’ listening exhaustion during covid-19 damla ricks, grace ellen brannon department of communication, college of liberal arts, university of texas at arlington, arlington, tx, usa abstract mental health counselors regularly use active listening skills to be present with each client; however, active listening may cause burnout due to high emotional labor, inadequate staffing, excessive workload, and many other issues, each of which contributes to career exits. covid-19 exacerbated all of these factors, and—adding to already stressful conditions—most mental health professionals were forced to conduct therapy sessions via telehealth. for this study, twenty licensed mental health counselors at various stages of their careers were interviewed during the height of the pandemic to understand their experiences with the technology and other factors related to their workload during that time. thematic qualitative analysis was used to explore effects of active listening—including requisite adjustments made for virtual therapy sessions—on counselors’ emotional exhaustion and burnout levels. results show how back-to-back, daily therapy sessions increased listening exhaustion levels and that counselors experienced both long-term and short-term listening exhaustion when utilizing telehealth due to lack of nonverbal cues and other related factors pertaining to online delivery. implications for counselors, social workers, and other mental health professionals are discussed. correspondence: grace ellen brannon, department of communication, college of liberal arts, university of texas at arlington, 700 west nedderman drive, fab 118, arlington, tx 76019, usa.  tel.: 817.272.2163. e-mail: grace.brannon@uta.edu key words: interpersonal communication, burnout, emotional exhaustion, listening, thematic qualitative analysis, covid-19 conflict of interest: the authors declare no potential conflict of interest, and all authors confirm accuracy. ethics approval and consent to participate: the ethics committee of the university of texas at arlington approved this study (20200496). the study is conformed with the helsinki declaration of 1964, as revised in 2013, concerning human and animal rights. informed consent: all participants to this study signed a written informed consent form for participating in this study. participants’ consent for publication: written informed consent was obtained from a legally authorized representative(s) for anonymized patient information to be published in this article. availability of data and materials: all data generated or analyzed during this study are included in this published article. received: 16 february 2023. accepted: 24 may 2023. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2023 licensee pagepress, italy qualitative research in medicine & healthcare 2023; 7:11261 doi:10.4081/qrmh.2023.11261 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. qualitative research in medicine & healthcare 2023; volume 7:11261 no nco mm er cia l u se on ly contributing to increased depression levels among those diagnosed with covid-19 (crayne, 2020; vindegaard & eriksen benros, 2020). the resulting increase in demand for mental health services during the pandemic merits further study regarding how mhps managed their increased caseloads, particularly via telehealth—a new channel for many healthcare providers. specifically, it is important to understand how increased caseloads affected mhps' ability to be present and to engage in active listening during a tumultuous time. the term “mental health professional” covers a wide range of professional responsibilities and certification requirements. as with most qualitative research, the sample for this study was relatively small, allowing for exploratory data collection and analysis. as such, this study focuses solely on licensed professional counselors (lpcs) and lpc associates, concluding with implications that may apply to other forms of mhps. more specifically, this study investigates mhps’ perceptions of i) active listening demands and expectations, ii) emotional exhaustion, and iii) telehealth usage during the height of the pandemic in the hope of better preparing for future public health crises. active listening implications, burnout, and covid-19 active listening active listening is a fundamental expectation in a variety of disciplines such as counseling, psychiatry, psychology, and other forms of health care. weger and colleagues (2014) highlighted the importance of utilizing active listening during initial communication with others, concluding that participants felt more understood when active listening skills such as paraphrasing and effective nonverbal communication were utilized, rather than providing suggestions or feedback. a mhp’s focus on staying in the present is one of the most fundamental aspects of communication, requiring the practitioner to provide undivided attention to the client during the session to actively listen, paraphrase, and empathize with the client effectively. clients’ perception of active listening can result in positive emotional appraisal (kawamichi et al., 2015), which could, in turn, build trust. effective active listening skills can promote growth and empathy during therapy sessions (bodie et al., 2015) and can help mhps moderate their own negative thoughts while working with distressed clients (altabef et al., 2017). some differences in performing active listening have been found between male and female mhps, with female mhps—who often feel less need for control of the sessions—being more likely to utilize active listening skills with their clients. conversely, other differences can occur based on professional experience, with newer mhp being more likely to have the need to control the session and view their roles in a more rigid way (altabef et al., 2017). among mhps, in particular, the value of active listening accompanied with empathy is especially evident when working with clients who have narratives related to past trauma (jeftić, 2020). on the other hand, mhps face burnout due to continuous, intensive exposure to negative topics and the pressure to perform as an effective listener. feeling like one is “on” for actively listening all the time may create psychological strain for mhps. in other words, mhps know that they should actively listen to their clients, but the active listening expectations that are a part of increasing caseloads and an increased number of people seeking therapy (vindegaard & eriksen benros, 2020) may be unrealistic and contribute to mhp burnout. while there are many resources to help reduce burnout levels such as utilizing mindfulness techniques, going to therapy, and facilitated burnout discussions in graduate school, many mhps do not fully comprehend the symptoms of burnout until they start experiencing them firsthand. it is not surprising, therefore, that mhps are subject to high levels of burnout (warlick et al., 2021). one study reported that nearly half of clinical or counselling trainees report experiencing burnout (kaeding et al., 2017) which is similar to recent reports indicating 45% of fully licensed psychologists feeling burned out (american psychological association, 2022) and that as late as 2022, 78% of psychiatrists feel burned out (summers, 2022; see also morse et al., 2012.) it is possible that current training may not be sufficient for managing burnout levels of mhps, especially considering that the pandemic increased active listening demands (gold, 2021). emotional exhaustion and burnout a major factor in mhp burnout is emotional exhaustion. psychological stressors can lead to emotional exhaustion, leading to decreased motivation, work performance, and mental health issues, each of which can result in lower work engagement, absenteeism, and burnout (charoensukmongkol & phungsoonthorn, 2021). not surprisingly, emotional exhaustion is a frequently cited reason for burnout among mhps (mccormack et al., 2018). ultimately, burnout can lead to leaving one’s job, particularly for mhps who deal with high emotional labor, involuntary detention of their clients, underfunding, excessive working hours, and related factors (johnson et al., 2018). common factors of emotional exhaustion specific to mhps are directly linked to working in a community setting, limited personal resources, lack of experience or less time practicing, and/or being younger (craig & sprang, 2010; emery et al., 2009). gender is another factor contributing to emotional exhaustion, with female mhps facing greater exhaustion levels (craig & sprang, 2010; johnson et al., 2018). further, in community settings, mhps experience [page 42] [qualitative research in medicine & healthcare 2023; 7:11261] article no nco mm er cia l u se on ly burnout and emotional exhaustion due to the higher number of weekly hour requirements, larger caseloads, and pressure to implement multiple evidence-based practices (kim et al., 2018). burnout levels of mhps are directly linked to in-session feelings of anxiety due to continuous emotional involvement (steel et al., 2015), and mhps are more likely to experience burnout when the progress of their clients is minimal and therapy outcomes are poor (delgadillo et al., 2017). lack of knowledge, inexperience, and limited training also negatively impact burnout levels (craig & spring, 2010), and mhps are also more likely to experience burnout when they must continuously manage conversations with challenging clients who may be hostile, negative, or dangerous (lee et al., 2019). recent research further shows that mhp burnout has a negative effect on client treatment outcomes and is correlated with lower job satisfaction ratings (delgadillo et al., 2018). mhps who are working long hours and experiencing listening exhaustion may decide to leave the profession or at a minimum, struggle with providing quality care to their clients. clients, of course, are also impacted by mhps’ mental and emotional states. the purpose of conducting therapy becomes meaningless if mhps are experiencing listening exhaustion and missing essential verbal and nonverbal information that could be vital to both parties. while mhp burnout is not new, conditions pertaining burnout were exacerbated by the pandemic’s farreaching effects including heavier workloads and requisite shifts in modes of delivery (joshi & sharma, 2020). telehealth vs. in-person therapy along with active listening, the choice of communication channel must also be considered to evaluate burnout level and emotional exhaustion. selection of communication channel is an important part of conducting effective therapy, and therapy can be conducted through variety of channels such as face-to-face, telephone, or videoconferencing. the covid-19 pandemic limited professionals’ contact with clients; therefore, mhps began using telehealth to ensure safety for themselves and their clients. the eventual shift to near-universal use of telehealth during the pandemic limited mphs’ contact with clients and may have had an impact on the efficacy of active listening, further contributing to burnout and emotional exhaustion. telehealth provides many benefits to healthcare providers and clients alike, specifically by reducing barriers clients face when seeking therapy, including alleviating travel concerns and costs, and increasing the availability of potential mhps, as one is not limited to geographically local availability (brown et al., 2017; moring et al., 2020; u.s. department of health and human services, 2020). despite benefits of telehealth under optimal circumstances (hawley et al., 2020), many professionals remain skeptical (poletti et al., 2021), often choosing not to utilize telehealth due to privacy concerns, interruptions in the household, safety of clients who may be high-risk for suicide and/or self-harm, and general technical complications based on internet connection and equipment. many professionals among healthcare organizations were forced to reconsider the virtual therapy option when covid-19 pandemic shook the public (zhou et al., 2020). in 2020, the american psychiatric association (apa) extended guidelines so that clients on medicare could be treated by telehealth regardless of geographical location, enabling clients to receive mental health services online throughout the pandemic. america’s health insurance plans (2021) listed a variety of health insurance companies’ alterations to their policies, allowing therapy sessions through telehealth and ensuring that clients and mhps stayed safe by continuing to practice social distancing. an unintended outcome, however, was added stress for mhps. sklar and colleagues (2021), for example, found that during covid-19, higher levels of work changes (e.g., modality shifts) were associated with higher levels of burnout (sklar et al., 2021). on the other hand, research on covid-19 and telehealth also showed promise—for women in particular—by improving control and increasing flexibility which, in turn, could increase participation in academic advancement opportunities (nadkarni & mittal, 2021). as recently as 2022, more than half (58%) of one study’s sample of psychologists reported treating some clients remotely, suggesting that telehealth as a modality for mental health treatment is here to stay. even so, psychologists still report approximately 48% of all clients facing internet access or connectivity challenges and 44% facing difficulties in finding a private place to connect for their sessions (american psychological association, 2022). research questions thus far, we have seen interrelationships among active listening, burnout, emotional exhaustion, and channel of delivery—all of which were further complicated by the covid-19 pandemic. in consideration of these complications and in the hope of preparing better for future national and international health crises, we address three research questions regarding counselors’ experiences during the covid-19 pandemic: how did counselors perceive burnout based on listening exhaustion in their professional and personal lives? how did counselors perceive their emotional exhaustion? and how did they feel about the costs and benefits of using telehealth? materials and methods author positionality before we present findings of the present study, we want to be self-reflexive and acknowledge our own standpoints based on our geographical location, race, nationality, [qualitative research in medicine & healthcare 2023; 7:11261] [page 43] article no nco mm er cia l u se on ly and level of training related to counseling (levitt et al., 2018). at the time of the manuscript being drafted, one author self-identified as a u.s.-based, mixed-race woman from the middle east with formal lpc training, and one author self-identified as a u.s., white-presenting, american woman without any formal lpc training. we were colleagues before undertaking this project, but had not yet worked together. after an informal conversation about burnout avoidance strategies, we realized that there was existing literature regarding higher education professionals, yet at the time, little to nothing for lpcs. simultaneously, the lpc coauthor had several therapist colleagues who were making major career transitions due to increased demands on their time with little support. this series of conversations sparked our idea to conduct this research. participants participants in this study ranged in age from 27 to 56 years of age. of the 20 participants, 10 were lpcs, and 10 were lpc interns (lpc-is).1 seventeen participants identified themselves as caucasian, two as asian, and one as native american. twelve identified themselves as women and five as men. fifteen were working full time; five were working part time, with two of those stating they were working fewer hours due to the pandemic. procedures after receiving approval (2020-0496) from university of texas at arlington’s institutional review board, participants were recruited through purposive and snowball sampling (creswell, 2007) via social media groups created for counseling and graduate schools. the posts asked for lpc and lpc associates to participate in a telephone interview with compensation of a $5 virtual starbucks gift card. each willing participant contacted the first author who sent an online, informed consent form to the participants. informed consent was also read aloud at the beginning of the interviews, and participants then agreed to audio recording. interviews were held between july 7th and september 7th, 2020, i.e., during the covid-19 lockdown period. participant enrollment ceased after 20 interviews were completed based on similarly occurring themes. interviews took place during a time of the participants’ choosing. the primary goal of the study, and thus the interviews, was to investigate how lpcs and lpc associates experience burnout and listening exhaustion during the early days of the covid-19 pandemic. we also sought to understand their perceptions of active listening related to telehealth versus face-to-face therapy sessions. interviews were conducted using a semi-structured interview guide (spradley, 1979) so that both interviewers asked several similar key questions of the participants. telephone interviews were used instead of face-to-face interviews to respect participants’ privacy and to adhere to public health guidelines for social distancing. interviews ranged from nine minutes to 35 minutes, for an average of 21 minutes per interview. because many participants were busy doing important work, we did not feel that asking for more of their time was appropriate, however participants were allowed as much time as they wanted to ask questions about the study design and the purpose of the study. a demographics questionnaire was provided for participants to verbally answer at the beginning of the interview. participants were asked to identify their age, gender, race, ethnicity, current average amount of hours worked as a clinician, years of experience, and current licensure. participants were asked for background information on active listening and experiences related to exhaustion. interview questions included “how would you describe ‘active listening’ skills [as a therapist]?” and “what are your thoughts about listening exhaustion?” as the interviews were conducted, both authors checked for understanding with participants to clarify that the preliminary findings were accurate, allowing participants the chance to challenge authors’ potential misunderstandings in the process. at about the 18th interview (of 20), responses become similar with no new or emergent data, indicating saturation (hennink & kaiser, 2022). data analysis both authors took notes identifying preliminary themes and marking comments during interviews. interview recordings, transcribed by a professional transcription company, yielded 110 single-spaced, typewritten pages covering almost seven hours of interview time. pseudonyms selected by participants are reported throughout to ensure confidentiality. data analysis, which both authors participated in, was a two-stage procedure, using reflexive thematic analysis (braun & clarke, 2006, 2013). the authors met in-person and virtually throughout the analytic process to discuss the themes and codes. first, interview transcripts were read in their entirety by each investigator. after reading the transcripts multiple times, the authors identified initial themes and began an open coding process to categorize the primary information by content area. the authors then used axial coding to identify the initial coding categories and subcategories, followed by selective coding to identify specific exemplars from the transcripts illustrating the themes of the research (creswell et al., 2007). the two authors reread the transcripts after creating the codebook to ensure that informa[page 44] [qualitative research in medicine & healthcare 2023; 7:11261] article 1 lpc-interns are now referred to as “lpc-associates (lpc-as). both lpcs and lpcas in texas have the same educational requirements (graduate degrees, completed practicum [at 300 hours, 100 hours of which are direct client contact]), have passed the nce or ncmhce, and have passed the texas jurisprudence exam. the difference is that lpcs have completed the additional 3,000 hours of supervised postgraduate-degree experience over at least 18 months, including 1,500 hours of direct client counseling contact (over the lpc-i/as). no nco mm er cia l u se on ly tion was reported correctly. differences were resolved through discussion. participant experiences and explanations understanding active listening expectations as a starting point for the first and second research questions, participants were asked questions related to the meaning of active listening and the importance of listening skills in therapy sessions. participants defined “active listening” in a variety of ways: i) actively engaged listening and being present with the client, ii) utilizing empathy, paraphrasing content and meaning to fully comprehend the message, iii) going beyond the words to understand what the client is conveying, even if they are not able to express their feelings appropriately, and iv) maintaining eye contact with the client and paying attention to nonverbal cues such as body language, affliction, and facial expression. to understand the role of listening in therapy, participants also answered a question related to their thoughts about how listening skills affect therapy sessions. all twenty participants agreed that active listening is one of the most essential skills in therapy. kyle, for example, described what active listening means to him as a mental health professional: active listening as a therapist is when somebody is presenting a problem to you or presenting an issue to you. it’s not just hearing what they are saying or even necessarily reflecting back. it’s not just necessarily communicating that you are listening. it’s really practicing your empathic skills and placing yourself in the client’s situation, so you are adopting their feelings, their values, their perspectives about the world, and you are putting yourself in that place almost in a sense that you feel their emotions and the conflict yourself. kyle’s quote indicates that listening actively goes beyond simply hearing the client and includes significant mental and emotional investment with the client’s narratives. in another example, elaine identified the difference between paying attention and active listening: “active listening means more than just paying attention. it means attending to everything that’s happening with the person and around the person, between you and the person, between the person and their environment, and between you and your environment.” like kyle, elaine acknowledged her responsibility to go beyond simply hearing what a client is sharing. it takes time, effort, and attention to focus on what is being said in what context, along with what is not said. participants described active listening as reading between the lines, interpreting relationships among verbal content, emotions, and body language. daya explained: “active listening is going beyond the words and maybe some type of meaning.... or, i guess, when i think about it, it’s understanding what they are trying to convey, even if they can’t necessarily express their feelings properly.” this level of attention to detail and interpreting what is explained and not explained, while often expected of mental health professionals by clients, creates a significant mental and emotional load that can be difficult to disengage from. burnout amidst counselors’ multi-contextual listening experiences while some participants stressed that they could utilize some of their listening skills in their personal relationships—since they have improved their listening abilities through practice within the profession—others mentioned the challenges of leaving their counselor persona “on” in their own personal relationships. for example, misty explained that “i would definitely say i’m a much better listener now. even if i’m not counseling them or anything like that, i am trying to be more mindful of other people and give them space and create empathy for them.” and chris mentioned, “in my personal life, my listening skills have increased by a lot. i listen too much now, i guess i should say. i do have to bring myself back and not fall into a therapist role.” both misty and chris acknowledged how their profession has improved their attention, and therefore, their interactions with others. yet, in doing so, they had to navigate the unclear boundaries of friend or family member in contrast to therapist. if a friend or family member does not want to have the “therapist role” focused on them, there could be negative relationship ramifications. indeed, while counselors reported improved listening abilities in their personal lives, they also explained the challenges of role-switching from being a counselor to a friend. like chris’ experience, elaine mentioned, [before being a counselor,] i would engage with people on a social level or want to go and hang out with people or invite them over. i don’t want that. it’s not like i’m trying to isolate, but i also don’t just invite more social circumstances into my home and my life which is hard because i am still pretty young and still like to have friendships. i hadn’t really thought about it really until now. now i’m talking about it, but that’s really the big thing. elaine’s experiences in feeling the need to role-switch subconsciously affected her ability to form and maintain friendships, which as she noted, she had yet to ruminate on or explore. during the time of covid-19, this was a particularly poignant observation as most people lost [qualitative research in medicine & healthcare 2023; 7:11261] [page 45] article no nco mm er cia l u se on ly much of their ability to socialize with others, which could have contributed to feelings of isolation and decreased social support. based on these examples, listening exhaustion could be linked to how counselors might feel distant towards friendships, leading to limited interaction with others. importantly, the effects of listening exhaustion could result in reducing communication and, thereby, reduced connection, with others, including the most intimate of relationships. sarah, for example, described the way her listening skills have impacted her marriage: “when we first got married, my husband would occasionally say to me, ‘okay, you’re therapizing me. you need to stop that.’ so, i had to learn over time how to turn that off.” glen shared a similar perspective: i think about when i go to the grocery store, and i get a chatty checker. i am like ugghhh. you know, it’s like i haven’t turned that switch on, and i’m not settled and prepared to do that. no! i don’t want to hear about your dental work! in these examples, counselors described that their patience with others tended to decrease over time. this decrease in patience was also demonstrated by counselors’ recollections of creating distance in conversations or avoiding topics. by creating distance or avoiding topics, interpersonal relationships with one’s closest friends, family members, or even spouses, therapists could thus unwittingly contribute negatively towards their relationships, possibly setting groundwork for relational turbulence or even relationship dissolution. emotional exhaustion to answer the second research question, participants identified how they have experienced listening exhaustion. three themes were identified: i) topic related listening-exhaustion, ii) number of daily client sessions and lack of breaks in between sessions, and iii) shortand long-term listening challenges. difficult topics the frequency of exposure to difficult topics can cause counselors to experience listening burnout, with over half of the participants (55%) specifically mentioning topics that created tensions. these topics included, but were not limited to trauma, discussions related to uncomfortable topics such as sexual offense, difficult clients with disrespectful behaviors, and clients who were not showing progress. as kyle explained: when you’re actively listening, you’re listening, like i said, and you’re adopting a sex offender’s values and a sex offender’s emotions, and you’re really not congruent with those feelings, that’s a very distressing place for anyone to put themselves into. for counselors, particularly less-experienced counselors, who interface with more challenging issues, connecting with the client may thus be difficult mentally and emotionally, particularly during times of crisis when numbers of clients increase. the emotional load in gathering information may also be heavy during these times, particularly as emotional or mental distance needs to be kept while creating the safe space for clients to grow: i’d say the only time i do [experience listening-exhaustion] is if i’ve had a client, ‘cause i work with teenagers too, so if they’ve been disrespectful, i definitely find those days more draining, when i’m having to challenge them or redirect them as opposed to when they’re motivated and cooperative. (mike) i think... i work with trauma, and so i know that on days where i have had a heavier day is what i would think of it as, where i’ve had maybe a lot of clients that day share details about their trauma, and then i go home, and i’m tired because i took all of that in. (paulette) these examples indicate the depth of burnout that counselors experienced on a daily basis during the pandemic, potentially negatively affecting their listening, which could, in turn, adversely affect their interactions with clients. we know that counselors working with clients experiencing extensive trauma are more likely to experience secondary trauma based on the information shared in sessions (sodeke-gregson et al., 2013), yet we see how covid-19 made this situation worse. counselor burnout levels were high pre-pandemic and often experienced mostly by newer counselors in the field lacking experience and knowledge, but covid-19 further exacerbated clients’ emotional levels broaching specific topics (e.g., trauma) during sessions (craig & sprang, 2010). while more experienced counselors have identified ways to counter their exhaustion levels through self-care, newer counselors may need more encouragement and conscious effort towards self-care. this finding supports the need for counselors to utilize self-care activities during times of crisis and is supported by previous research highlighting the importance of personalized self-care in helping with burnout levels (colman et al., 2016; rokach & boulazreg, 2020). number of daily therapy sessions the amount of time spent in sessions with clients caused listening exhaustion in counselors, with fourteen [page 46] [qualitative research in medicine & healthcare 2023; 7:11261] article no nco mm er cia l u se on ly of the participants mentioning that the number of daily client sessions as well as the lack of breaks between sessions increased their listening exhaustion. specifically, having too many clients in one day or in a row without a break was mentioned as reason for possible listening exhaustion. the number of sessions related to listening exhaustion varied from “four to five sessions in a row” to 40 hours of listening in a week. given that the need for counselors had increased, yet the numbers of available counselors had not, coupled with the pandemic’s other demands, many counselors experienced increased client load. steve described his experience: listening exhaustion is definitely present, you know. it can be tough, especially when you have like four or five sessions in a row. it’s hard to…. you got to really make sure that you know, you’re taking care of yourself in your little ten-minute breaks between sessions. elaine similarly reported that she felt overwhelmed as a student, leading toward burnout: so, when i was an intern, i can think of a couple of times that i saw like eight or nine clients in a day, which was a lot for being so new, and i just remember like this full body tiredness. and i can’t listen to anything else driving home from work with no music on or anything because i just can’t absorb it. shortand long-term listening exhaustion levels these findings are further complicated by variation in shortand long-term listening exhaustion levels. previous research has found that feeling moderate/high levels of exhaustion over long periods of time after listening to complex and intense information may lead to burnout, especially when multiple back-to-back counseling sessions day after day occur (rosenberg & pace, 2007). since many mental health counselors leave their profession due to burnout or because they no longer find their counseling career fulfilling (farber, 2008), identifying methods of decreasing the burden on our already overstrained and under-supported mental healthcare system should be a priority for health interventionists. as such, it is particularly vital to recognize the effects of listening exhaustion on counselors’ personal lives and mental health. among responses of participants, listening exhaustion was further described in terms of short-term or long-term implications of mental, emotional, and physical fatigue created by extensive and continuous active listening. symptoms of listening exhaustion included physical fatigue, tiredness, irritability, isolation, lack of motivation, depersonalization, headaches, a sense of being overwhelmed, and information overload. while listening exhaustion is not necessarily the direct result of active listening, it may be one of the leading factors to compassion fatigue, emotional exhaustion, and burnout in counselors. elaine, for example, used a metaphor to describe listening exhaustion by stating that listening exhaustion “is like a pitcher of water that is totally full, and it cannot take any more water, or it will spill over.” nearly two-thirds (13) of participants’ answers included daily or short-term listening exhaustion due to the rate of the client’s speech, the type of content shared during the session, and/or the redundancy of some content. as misty explained, “listening exhaustion happens more to me when i am sitting with a client who is just kind of rambling about something.” arlene mentioned a similar experience: i guess there are some clients that want to answer a bunch of questions that you don’t ask when you’re trying to get them to a point or work through an exercise like that. i find clients where i’m asking one question, they briefly answered it and then gone on to this huge story that isn’t even relevant. counselors thus associated irrelevant topics that deviated from the session’s focus as a cause of listening exhaustion. one major challenge of therapy, therefore, is redirecting the conversation to focus on the goal of therapy. of course, what may be irrelevant for the counselor may not necessarily be irrelevant for the client, increasing the complexity of managing conversations. counselors reported that client redirection to focus on the goal of treatment could be tiring. elsa explained: [c]lients that are really redundant and kind of speak in more circular conversations where they just tend to stay in that circle and repeat the same things and never getting to the point of what they’re there for and what they need to work on. like lack of focus in content shared by the clients, here, elsa correlated repetition of information with an increase in listening exhaustion levels. further, elsa emphasized that the rate of language can cause listening exhaustion: “it can happen when the person is communicating at a very fast pace…, but also at the same time, maybe a very slow place, and there’s not much opportunity for being able to interject and say something.” four other participants focused on listening exhaustion over the long term, noting that listening exhaustion can impact how much someone wanted to be around others, possibly affecting interpersonal relationship development. as patrick stated: “i definitely remember there were times where i was like, i just don’t want to talk to people, i don’t want to listen to people. [laughs] i am just kind of spent, like i’d actually like to be listened to if anything.” like patrick, victoria stated, [qualitative research in medicine & healthcare 2023; 7:11261] [page 47] article no nco mm er cia l u se on ly in session i’m fine, but after that, i snap. i get easily irritated. i just need some quiet time…. you don’t want to come home in a snappy mood, right? so, i’ve noticed that on harder days, i’m just exhausted to the point that i don’t want to say anything. sometimes i just sort of check out, i guess. watch tv. just sit down. just dissociate for a little bit. give myself some rest, and after a good two, three hours i should be in a better mood. as these quotes suggest, long-term effects of listening exhaustion levels were associated with withdraw from daily social interaction. counselors’ experiences of being drained over long periods of active listening could thus affect interactions outside of the workplace, including counselors’ personal lives. telehealth and exhaustion mixed responses to telehealth the third research question investigated how counselors in the early months of the pandemic perceived the use of telehealth therapy sessions related to their emotional exhaustion levels. eighteen participants had experience using telehealth for therapy sessions, with most gaining that experience due to the pandemic. the same number of participants stated that they prefer in person, face-to-face sessions rather than telehealth. some participants explained that during covid-19, telehealth was necessary for a variety of reasons, but that if there was not a pandemic, they would much rather conduct face to face sessions. sarah, for instance, stated: i have to say i am in the high-risk group for the pandemic, and so i don’t have a choice to go faceto-face. i have to do telehealth right now…. i am trying to figure out new ways to connect with my clients and be able to listen to them. as demonstrated by sarah, even if some of the counselors preferred face-to-face sessions, fear of contacting covid-19 caused them to consider telehealth to conduct sessions—but at a potential cost. on the other hand, a minority (four) of participants preferred telehealth as their choice of channel to conduct therapy. convenience for both the counselor and the client were highlighted: i literally woke up 15 minutes before this call. if i had to drive to your office, then i would have to wake up and shower and change and make sure clothes were ready. there is much less time involved that is not necessarily have anything to do with our interaction together, but its time out of my day that i have to get ready for! (kyle) kyle’s experience highlighted the benefits of working from home, saving time and energy to expend elsewhere. in comparison, daya contextualized her preference for telehealth around public safety measures due to covid-19: i love working from home, and i have done this in the past. obviously, the safety aspect of not feeling like i’m being exposed…. not having to sit faceto-face with someone, and them sneezing or coughing or spitting. i just love having my own clean space. other participants said that clients were less likely to cancel because of the telehealth convenience and explained that increased access due to geographical limitations was much less of an inhibiting factor for help-seeking behaviors. and as noted above, counselors also appreciated using telehealth to adhere to social distancing recommendations and reduce risk of covid-19 transmission during the height of the pandemic, particularly as the physical distance created increased safety perceptions. although a minority of participants preferred conducting therapy sessions through telehealth, all participants nevertheless indicated some concerns and hesitations related to utilizing telehealth. victoria, for instance, explained the difficulties of working with telehealth: i find telehealth to be a little more tedious than face to face, especially when it comes to listening. i have to pay more attention, or maybe it’s harder to be fully present because there’s other people in the background both in my end or their end. like victoria, julia mentioned her concerns with utilizing telehealth, emphasizing the conscious effort required to concentrate and its effects on both her and her client, along with the session’s quality: i think i am always in this i-am-missing-something kind of mode with telehealth, so just in this heightened concentration, trying to make sure that i am not and that i am picking up on as much as i can. i think it makes both the client and me kind of ready to be done earlier than a normal session, and i feel like there are more awkward pauses. concerns about nonverbal communication our findings show that while telehealth was recognized as the safest option during the pandemic to conduct therapy sessions for both the client and the counselor, one particular weakness was a factor that majority of the counselors felt contributed directly to their listening exhaustion levels due to the inherent limitation of online communication, i.e., the absence (or at least, obfuscation) of nonverbal cues. [page 48] [qualitative research in medicine & healthcare 2023; 7:11261] article no nco mm er cia l u se on ly because a large part of therapy sessions concentrates on clients’ nonverbal communication such as facial expressions, gestures, and body movements, a concern associated with telehealth usage is the limited feedback provided through the channel. as with victoria’s concerns with missing a gesture noted above, elaine further expanded on the nonverbal limitations: therapy is not just a speech. i think the therapeutic relationship hinges on where you are in the room, what position you are in the room based on the person, even which seat the person chooses. body language, facial—even how they sit in their chair. but also, not being able to see what they are doing with their hands. are they jiggling their leg? i personally would call out and ask about the gestures. i can’t do that [in telehealth]. here, elaine described the important qualities of in-person sessions by highlighting the importance of observing the gestures of the client to fully comprehend the client’s feelings and emotions. this information is supported by past research demonstrating that individuals prefer richer channels (e.g., receiving a greater variety of cues) when they have a choice between different media (thompsonde benoit & kramer, 2021). foley and gentile (2010) similarly highlighted the importance of nonverbal communication to attain appropriate information when identifying clients’ feelings emotions and personal needs. some counselors were also concerned about the accuracy of the limited information they received through telehealth because nuances in meaning can be missed when a visual channel partially obscured clients or was completely absent. patrick, for example, described a moment in therapy when he misunderstood the client’s tone due to an absence of visual cues, thereby affecting his ability to assist the client to the fullest capacity: i was like “so how’s it been since we last talked?” and he’s like, “just fantastic.” i started to say, “oh, that’s great,” that “i don’t get to hear that often.” he was clearly being sarcastic, because he launched into something afterwards. so you do miss stuff like that. though telehealth has made connecting with clients easier, increased accessibility (particularly in remote areas), and more cost efficient, technical issues and limitations of nonverbal cues have made some counselors experience listening exhaustion. specifically, losing out on nonverbals like bouncing a leg, hand clenching, or fidgeting may not be visible on a telehealth visit, particularly if the client is holding their own phone for the session’s videoconferencing, limiting the visibility of both the client and the external environment. further, some telehealth visits are audio only, limiting any visible cues, which is possibly why patrick missed his client’s sarcastic response. and chris shared his concerns with misreading client’s statements due to limited availability nonverbal cues, noting how tiring the process can be, thus severely limiting his ability to make clinical decisions, echoing previous research (foley & gentile, 2010): it [telehealth] can get exhausting at times, because not only are you missing some of the nonverbal, what they’re saying…. and on top of that, i have to also check myself to make sure i’m not filling in the blanks on things i can’t physically see. indeed, fourteen participants mentioned experiencing some form of exhaustion in conjunction with telehealth. as victoria explained: i feel like i have to strain a little bit to listen, whereas in-person i never have to strain. [in person,] i was listening, and it was fine. it seemed to come more natural then, whereas in telehealth it seems a little bit forced. i’m not really sure why. sarah said, “it was so much harder to connect…. i felt like my mirror neurons were scanning so hard to connect with that other person, and you just can’t do it in the same way over a computer.” while sarah’s experience was focused on the emotional and mental aspects of being drained, paulette’s was more physical: “i feel physically drained. it makes me feel a little more burnt out than normal.” jessica mentioned her own experience of being in therapy on the other side of the counselor/client relationship to provide further context: “i was actually talking to a psychiatrist about this two days ago. we’re both talking about how much longer [laughing] the hour in person just flies by, but really like an hour online can just drag on sometimes.” concern about visual communication was also described with regard to clients’ ability to be present in their sessions. as steve described it: “the client’s a little distracted when you see them messing with their phone…. they’re not fully present it’s frustrating…. in all honesty, i hate to say that, but it does [add to listening exhaustion].” for steve, the client’s distraction made it harder on both the client and the counselor to engage appropriately during the session. each of these responses indicates that while counselors were meeting their clients’ immediate needs by offering telehealth services, they did not yet feel that they were i) trained or comfortable enough in managing client interactions via telehealth, and/or ii) that they were not meeting their clients’ long-term needs because of unexpected issues like client distractions and technological limitations—both factors augmenting therapists’ feelings of exhaustion. [qualitative research in medicine & healthcare 2023; 7:11261] [page 49] article no nco mm er cia l u se on ly implications our findings highlight the experiences of mental health counselors during the early days in the pandemic. specifically, they show the presence of burnout based on listening exhaustion in counselors’ professional and personal lives, that counselors felt exhaustion, and that while there are benefits to using telehealth (and that it was necessitated at the time) there are clear drawbacks for both the client and the counselor in using telehealth. this study’s findings provide implications affecting mental health counselors’ health, well-being, and ability to offer quality services to those who need therapy, focusing on experiences of mental health counselors during the covid-19 pandemic. first, it is imperative to remember that listening exhaustion levels can affect quality of services provided to others. listening exhaustion should be recognized as one of the many reasons leading to burnout, and more research is needed to fully comprehend the challenges of active listening in both the short term and long-term. agencies, private practices, and other mental health-centered organizations should consider the number of daily sessions provided by counselors and the complex nature of content discussed during these sessions. modalities used to conduct therapy should also be considered for quality of therapy sessions to help set realistic expectations of counselors’ efforts to decrease listening exhaustion levels that may later lead to burnout. future research should continue to examine the effects of telehealth communication in mental health contexts, particularly focusing on the channel of communication chosen by the practitioner and the client. a recent scoping review emphasized the need for further investigations evaluating discourse related to mental health challenges after covid-19, so research should continue this trajectory. further, counselors in training (lpc interns/associates and earlier) should be offered training that addresses listening exhaustion, how it may manifest, and strategies for dealing with listening exhaustion both inside and outside of their work as a counselor. in light of covid-19, and to prepare for other such public health crises, it is of the utmost importance to have stability and consistency for mental health counselors regarding caseloads and established norms for how to manage both virtual and face-to-face client interactions. and, while the exact future of online therapy is unclear and is being used less often than at the height of the pandemic, it is still a go-to modality, meaning that telehealth is here to stay. conclusions our study provides relevant and timely information based upon twenty counselors’ experiences providing therapy using telehealth during the covid-19 pandemic. active listening provides many benefits, yet is a complicated phenomenon, particularly within the context of health care—even more so amidst major catastrophes such as the covid-19 pandemic. while mental health professionals have training and resources to help with burnout levels, many still report concerns. telehealth is a useful option for delivering mental health services, especially during health crises, yet its use in the therapy setting should be tailored to the specific client (e.g., some participants may not be comfortable in using a videoconferencing tool due to privacy concerns). as with any exploratory, qualitative study, several limitations exist; however, these limitations provide the context for future research. one specific limitation includes that all interviews were via the telephone. while this did allow us to conduct research safely during the covid-19 pandemic by adhering to public health recommendations and safety protocols, we missed some nonverbal communication that may have been clearer in face-to-face interviews. another limitation includes credentials of those who volunteered to be interviewed related to their active listening and telehealth experiences. this research focused on lpc and lpc associates. future research should include a wider range of healthcare providers. in this way, possible distinctions can be made when considering counselor experiences associated with listening exhaustion and telehealth. aside from licensure, other participant-related factors should be considered in future research. while our participants varied in age (27-56), the majority were females (65%) as well as caucasian (85%). variation based on demographic characteristics must be taken into consideration to get a more accurate understanding of therapy experiences of counselors. future research should also focus on the efficacy of training and discussions related to burnout during times of crisis and possibly other successful interventions, particularly as burnout-centered interventions are promising (awa et al., 2010). clinicians experiencing listening exhaustion may be more likely to burn out and leave the profession, which is especially relevant given the increasing workloads and demands for treatment since the beginning of the pandemic. ultimately, healthcare organizations may need to support their counselors better, particularly as one method of self-care for counselors is counseling for themselves. finally, further research could also address in what ways listening exhaustion affects professionals in other fields aside from counseling. such fields would include healthcare administration and education at all levels. references altabef, d., meier, s., reynolds, a., delucia, j., & friedling l. 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(2021). telepsychotherapy: a leaflet for psychotherapists in the age of covid-19. a review of the evidence. counselling psychology quarterly, 34(3-4), 352-367. rogers, c. r. (1951). client-centered therapy. houghton-mifflin. rokach, a., & boulazreg, s. (2022). the covid-19 era: how therapists can diminish burnout symptoms through self-care. current psychology 41(8), 5660-5677. rosenberg, t., & pace, m. (2007). burnout among mental health professionals: special considerations for the marriage and family therapist. journal of marital and family therapy, 32(1), 87-99. sklar, m., reeder, k., carandang, k. et al. (2021). an observational study of the impact of covid-19 and the rapid implementation of telehealth on community mental health center providers. implement science communications, 2(29). sodeke-gregson, e. a., holttum, s., & billings, j. 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(2021). work with emotions in remote psychotherapy in the time of covid-19: a clinical experience. counselling psychology quarterly, 34(34), 368-376. u. s. department of health and human services (2020). faqs on telehealth and hipaa during the covid-19 nationwide public health emergency. hhs-0945--f-4530. https://www. hhs.gov/sites/default/files/telehealth-faqs-508.pdf vindegaard, n., & eriksen benros, m. (2020). covid-19 pandemic and mental health consequences: systematic review of the current evidence. brain, behavior, and immunity, 89, 531542. warlick, c. a., van gorp, a., farmer, n. m., patterson, t., & armstrong, a. (2021). comparing burnout between graduatelevel and professional clinicians. training and education in professional psychology, 15(2), 150–158. weger, h., castle bell, g., minei, e. m., & robinson, m. c. (2014). the relative effectiveness of active listening in initial interactions. international journal of listening, 28(1), 13-31. zhou, x., snoswell, c. l., harding, l. e., bambling, m., edirippulige, s., bai, x., & smith, a. c. (2020). the role of telehealth in reducing the mental health burden from covid-19. telemedicine and e-health, 26(4), 377-379. [page 52] [qualitative research in medicine & healthcare 2023; 7:11261] article no nco mm er cia l u se on ly https://www.hhs.gov/sites/default/files/telehealth-faqs-508.pdf https://www.hhs.gov/sites/default/files/telehealth-faqs-508.pdf https://www.hhs.gov/sites/default/files/telehealth-faqs-508.pdf layout 1 [qualitative research in medicine & healthcare 2018; 2:7417] [page 101] introduction physician burnout has been characterized as reaching epidemic levels with an estimated prevalence ranging from 30% to over 54%.1,2 burnout is the consequence of prolonged and excessive stress, occurring when abilities are perceived to be unable to meet demands.3 the ensuing burnout is characterized by a triad of emotional exhaustion, decreased sense of accomplishment and depersonalization.3 compared with the general population, physicians have twice the risk of burnout, and 1.4-2.3 times the relative risk of completed suicide in male and female physicians respectively.2,4 compared to other physicians, anesthesiologists have been shown to be particularly at elevated risk of burnout, substance abuse and suicide-related mortality.5-11 a number of predisposing factors have been proposed to explain this increased risk, including the high intensity and critical nature of the work, the time-pressure demands, the medical culture of denying weakness, the easy access to drugs, personality characteristics and the relative isolation of the work environment.12 more disturbing is that the highest risk of burnout seems to occur during residency training.10 in a us survey of anesthesiology residents, high burnout risk was found in 41% of respondents and depression in 22%.10 compared with practicing anesthesiologists, anesthesia trainees have twice the incidence of substance abuse and three times the incidence of suicide.13 this has significant implications not only for the personal and professional stress and burnout in anesthesia residency: a case study of peer support groups jessica spence,1 david smith,2 anne wong1 1department of anesthesia; 2department of psychiatry and behavioural neurosciences, mcmaster university, hamilton, ontario, canada abstract stress and burnout are alarmingly prevalent in anesthesiologists, with the highest risk occurring during anesthesia residency training. to better understand this phenomenon, we conducted a mixed methods case study of our anesthesia training program to explore the residents’ accounts of stress and burnout and the potential value of peer support groups. eight out of thirty eight residents participated in nine monthly peer support group (psg) meetings followed by a focus group interview about stress and burnout in training and the value of psg. we compared the participants’ mean pre-and post-psg maslach burnout inventory® (mbi) and perceived stress scale® (pss) and analysed the focus group interview for recurring themes. we captured the perspectives of twenty seven out of thirty residents who did not participate in support groups (non-participants) through an online survey on stress and burnout. we found evidence of a high prevalence of stress and burnout from the mbi and pss scores and survey responses. analysis of the focus group interview showed that the specific stressors of anesthesia training included: an individually-based model of training that predisposes to isolation from peers, an over-reliance on the quality of the faculty-resident relationship and the critical, high stakes nature of the profession. residents strongly endorsed the value of psg in decreasing isolation, enhancing validation, and support through the sharing of experiences. lack of dedicated time and integration into the training program were major barriers to psg participation. these barriers need to be overcome in order to fully realize its role in mitigating stress and burnout. correspondence: anne wong, department of anesthesia, mcmaster university, 2v3–1280 main st. west, hamilton, ontario, canada; l8s 4k1. tel.: +905.521.2100 ext 75212 fax: +905.523.1224. e-mail: wongan@mcmaster.ca key words: anesthesia residency training; burnout; stress; physician health; peer support. contributions: js, aw: development of protocol, data analyzing; aw, ds: manuscript review; js: data collection, manuscript writing; ds: facilitation of peer support groups. conflict of interest: the authors declare no potential conflict of interests. funding: this project was funded by a special projects grant from the canadian physician health institute (cphi). acknowledgements: the authors would like to thank toni tidy, who assisted with participant recruitment, data collection and logistical organization of support and focus groups. conference presentations: this study was presented at the canadian conference on physician health (ccph) in winnipeg, manitoba, canada on october 16, 2015. it was also presented at the international conference on residency education (icre) vancouver, british columbia, canada on october 23, 2015. received for publication: 14 march 2018. revision received: 3 august 2018. accepted for publication: 3 august 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright j. spence et al., 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:101-112 doi:10.4081/qrmh.2018.7417 qualitative research in medicine & healthcare 2018; volume 2:101-112 no nco mm er cia l u se on ly wellbeing of our next generation of anesthesiologists but also for patient care and safety.10 however, it remains unclear which elements of training predispose anesthesia residents to be at relatively higher risk compared to their counterparts in other disciplines. peer support has been increasingly recognized as integral to wellbeing for trainees and staff physicians.5,9,1419 peer support group participation decreases isolation, validates experiences, facilitates reflectiveness and a stronger sense of professional identity as well as improves resilience.19,20 these benefits translate to decreased burnout and perceived stress, increased empathy and job satisfaction, and improved patient care.21-23 while peer support groups have been studied in other specialties, the use of peer support in the anesthesia resident population has not been explored.16,17 in contrast to residents in other specialties such as internal medicine, surgery, and obstetrics, canadian anesthesia residents typically manage patients alone under the supervision of a staff anesthesiologist, rather than in a peer-based team. within this training model, residents have limited opportunities and access to peer support. the purpose of our study is twofold. we explore anesthesia residents’ accounts of stress and burnout to better understand their contributing factors. we also examine the value of peer support group participation (psg) in mitigating stress and burnout. in doing so, we hope to improve the training experience for our residents and provide further insights to inform other anesthesia residency programs with similar concerns. materials and methods ethics approval was obtained from the hamilton integrated research ethics board at mcmaster university prior to the start of the study. we use a case study research methodology, a research approach with origins in anthropology, sociology, and psychology.24 a case study is defined as an in-depth description and analysis of a bounded system, the boundaries of which fence in what is to be studied.24 case studies are particularistic,24 contextually-based, and draw from any mix of quantitative and qualitative evidence25 and as many variables as possible.24 this methodology allows us to explore the phenomenon of resident stress and burnout within the boundaries of our anesthesia training program.24,25 in particular, we want to understand anesthesia residents’ accounts of stress and burnout and their contributing factors. secondly, we want to examine the value of peer support groups in mitigating residents’ stress and burnout. we used a mixed-methods approach in our case study in order to develop a more holistic understanding from the integration and triangulation of both quantitative and qualitative sources of information.24-26 we take a social constructionism perspective that posits that individuals make sense or co-construct their understanding of reality through dialogic and social interactions with others and their environments.27 thus, knowledge is a relational process that is embodied and mediated through language and context.27 as researchers, we acknowledge how our own interpretation of the research findings is influenced by our own past experiences and interactions during the research process. our research team consists of an anesthesia resident (js), faculty anesthesiologist (aw) and social worker (ds). we took these different perspectives into consideration during our team meetings and analysis and interpretation of the findings. the study consists of two main components. all residents enrolled in the university anesthesia residency program were eligible for recruitment to participate in a total of nine facilitated monthly peer support group (psg) meetings. to assess the potential value of psg in mitigating stress and burnout, we measured participants’ scores using the maslach burnout inventory® (mbi) and perceived stress scale® (pss) (mbi, example available at https://www.mindgarden.com/314-mbi-human-servicessurvey#horizontaltab2 accessed august 20, 2018. pss available at http://www.mindgarden.com/documents/perceivedstressscale.pdf accessed august 20, 2018) prior to the first psg meeting and after the ninth psg meeting. we compared the pre-post mean values, using the psg participants as their own control. we also explored their accounts of stress and burnout and the value of psg by analyzing the facilitator psg meeting notes and a focus group interview held at the end of the nine meetings. in order to capture the perspectives of the remaining residents who did not choose to participate in psg (nonparticipants), we administered an online survey to understand their perceptions of stress and burnout and barriers to participation in psg. we analyzed and integrated the data from these two components of the study in order to address the research questions. the prevalence and accounts of stress and burnout during residency training and the value of psg are the primary study outcomes and the contributing factors to stress and burnout in anesthesia residency are secondary outcomes. we describe the study details in the following sections. study context there are 17 university-based anesthesia residency training programs in canada. all have a similar organizational structure and follow the same curricular and training requirements set out by the royal college of physicians and surgeons of canada (the national certification organization that oversees specialist residency training). anesthesia residency training comprises of a total of five years of training after the completion of medical school. at the time of the study, the department of anesthesia had a total of 88 clinical faculty anesthesiologists who [page 102] [qualitative research in medicine & healthcare 2018; 2:7417] article no nco mm er cia l u se on ly work at four hospital sites. all clinical faculty are responsible for supervising and teaching the residents. during our study period, the anesthesia residency program consisted of a total of 38 residents in postgraduate years (pgys) 1-5. the residency academic year typically runs between july 1st to june 30th of the following calendar year. the residents rotate through all four main hospitals during their clinical training. pgy 1 is a basic clinical training year consisting of two months of anesthesia in addition to core rotations in medicine, pediatrics, obstetrics and surgery. pgy 2 consists of core rotations in general anesthesia training. the pgy 3 year consists of medical subspecialty and intensive care unit rotations. pgy 4 and 5 focus on both general and subspecialty anesthesia training. during the clinical anesthesia rotations, residents are assigned on a daily basis to work one-on-one with a faculty anesthesiologist in the operating room. under this residency training model, residents typically work with a different faculty member each day. residents are also assigned to take 24-hour on-call shifts individually rather than as part of an on-call team, and work directly under the supervision of the on-call faculty anesthesiologist. study activities peer support group meetings in order to understand the potential value of psg on resident stress and burnout, we recruited anesthesia residents to participate in monthly peer support group meetings during the academic year. of the 38 pgy1-5 anesthesia residents in the residency program, 35 were eligible to be included in this part of the study (three residents were on maternity leave during this recruitment period). we sent an invitation to participate email with an attached information/consent form to all of the residents followed in a few weeks by a reminder email. we also held two separate information sessions about the study just prior to their academic teaching sessions. our research assistant coordinated all direct communication and recruitment procedures, including obtaining consent, to ensure confidentiality and voluntary participation. eight residents were recruited to participate in the monthly psg meetings for a total of nine sessions between september and june of the following year. these sessions were held at the main university campus classroom after working hours to allow residents adequate time to travel from their respective hospital locations. the purpose of these meetings was to allow a regular venue for residents to discuss any issues that concerned them. all psg meetings were held in confidence with no faculty anesthesiologist involvement. a faculty social worker with no affiliation to the anesthesia department helped facilitate the meetings but the residents primarily led the discussions. participants were encouraged to submit topics to the facilitator prior to each session. these submitted topics provided the stimulus for group discussions in addition to any other issues that were raised during the session. to assure confidentiality and promote open conversations of potentially sensitive topics, we did not record the meetings. instead, the facilitator made reflective summary notes of the discussion after each meeting. after the final session, we held a one-hour focus group interview to further explore participants’ experiences of stress and burnout during residency, as well as contributing factors in the training program and their accounts of the value of the psg meetings (see the online appendix). the focus group interview was recorded and transcribed with permission for qualitative analysis. we administered the mbi and pss to the eight participants prior to the first and after the completion of the last psg meeting in order to measure the participants’ baseline and post-psg risk of burnout and level of perceived stress. the mbi is a gold standard indicator used to evaluate burnout.3,8,28-33 this 22-item instrument assesses three dimensions of burnout: emotional exhaustion, depersonalization and low personal accomplishment.3 the 9-item emotional exhaustion subscale measures one’s emotional reserves, and assesses feelings of being emotionally overextended and exhausted by one’s work. the 5-item depersonalization subscale assesses for an unfeeling and impersonal response towards one’s patients. the 8-item personal accomplishment subscale evaluates feelings of self-efficacy in relation to one’s work with patients. high scores on the emotional exhaustion (≥ 27) and depersonalization subscales (≥10) and low scores of the personal accomplishment subscale (≤33) are associated with a high risk of burnout. pss is a 10-item scale that examines individual perceptions of the stressfulness of life events, with high scores (>15) corresponding to high levels of perceived stress.34 it has been widely used to quantify perceptions of stress in medical education settings.34-36 non-participant survey as the majority of our anesthesia residents did not participate in the psg meetings, we developed a survey for these residents (non-participant survey) in order to understand their perceptions of stress and burnout as well as the barriers to psg participation. we generated the survey questions by using an iterative process that included review of pertinent literature and consultation with faculty and residents.3,7,17,32,33,37 we pre-tested the survey on anesthesia residents and faculty to ensure clarity and comprehensiveness. we then converted the survey into an online format using the surveymonkey® platform37 and disseminated it to the 30 non-participant residents (the three previously on-leave residents included) by email link. analysis the sources of data included the psg participants’ preand postpsg mbi and pss scores, the facilitator’s [qualitative research in medicine & healthcare 2018; 2:7417] [page 103] article no nco mm er cia l u se on ly notes of the psg meetings, the post-psg focus group interview and the non-participant survey. we used descriptive statistics to analyze the demographic details and non-participant survey results. we compared preand postmbi and pss scores using student’s paired t-test. the two primary co-investigators (js and aw) separately conducted the analysis of the focus group transcript using the qualitative analytic approach outlined by merriam.24 we subjected the transcript to close reading and primary coding of the data segments that pertained to the phenomena of stress in residency and the role of peer support. we aggregated similar or related codes into broad categories until we could comprehensively account for all of the coded data. we then analyzed the categories for recurring patterns to aggregate similar categories into themes and subthemes. we conducted team meetings to compare the separate analyses and resolved discrepancies by way of discussion in order to arrive at a final consensus of the final themes and subthemes from the focus group interview. we used the facilitator’s session notes to supplement our interpretation and analysis. we analyzed each component of the case study separately before integrating the quantitative and qualitative elements to arrive at the interpretation of our study. to ensure study rigor, we maintained an audit trail of research procedures and analysis, conducted member checking (participant feedback on summarized results), and peer review of the completed analysis and results. results monthly peer support group meetings pre and post-maslach burnout inventory® and perceived stress scale® results eight residents out of a total of 38 residents participated in the monthly psg meetings. participants were at the pgy 2, 3 and 4 levels of training. the majority were female, aged 25-35 years and all reported being either married, common-law or in a relationship (table 1). pre-mbi test shows a group mean for two out of the three mbi subscales (emotional exhaustion and depersonalization) that are consistent with high burnout (table 2). interestingly, professional accomplishment subscale scores are consistent with lower risk of burnout at baseline. the mean pss score is higher than normative data for those from a similar educational background, consistent with high perceived stress (table 2). the post-mbi scores at the conclusion of the peer support group meetings are essentially unchanged. the post-pss score shows a small increase from 17.4 to 20.9 (p<.05). [page 104] [qualitative research in medicine & healthcare 2018; 2:7417] article table 1. demographics of peer support group participants (n=8). demographic n (%) postgraduate year (pgy) level pgy1 0 pgy2 3 (37.5%) pgy3 2 (25.0%) pgy4 3 (37.5%) pgy5 0 gender male 1 (12.5%) female 7 (87.5%) age (years) <25 0 25-30 5 (62.5%) 30-35 2 (25.0%) >35 1 (12.5%) relationship status single 0 unmarried but in a relationship 4 (50.0%) married or common-law 4 (50.0%) table 2. maslach burnout inventory® (mbi) subscale and perceived stress scale® (pss) scores before and after support group participation with normative comparisons. scale mean (sd) baseline mean (sd) post-participation p value mbi – depersonalization subscale resident scores 13.8 (5.3) 11.6 (4.5) 0.2068 normative comparison* ≥10 mbi – emotional exhaustion subscale resident scores 34.0 (8.2) 30.6 (7.2) 0.1926 normative comparison* ≥27 mbi – professional accomplishment subscale resident scores 43.3 (8.2) 44.5 (5.8) 0.3278 normative comparison* ≤33 pss resident scores 17.4 (5.2) 20.9 (2.2) 0.05 normative comparison+ 15.8 (7.5) *derived from a group of 1104 physicians and nurses. scores in the lower, middle and upper thirds of validation cohort were classified as low, average and high risk of burnout respectively. shown here are ‘high’ risk score cut-offs.3; +derived from 2000 men and women in 2009. shown here are mean (sd) scores.34,37 no nco mm er cia l u se on ly discussion topics in the peer support group meetings (facilitator’s notes) attendance varied from between two to four participants throughout the nine psg sessions due to scheduling issues (on call, vacations etc.). recurrent topics of discussion included: feelings of isolation, challenges in forming relationships amongst peers, training in a high risk specialty and dealing with medical error. residents were particularly concerned about their professional competence and whether they were performing adequately for their level of training. this was a recurring source of anxiety and stress as expressed by one of the residents: sometimes i worry that i won’t ever know/be capable of functioning at the level of a staff [faculty anesthesiologist] these insecurities around professional competence were exacerbated by poor patient outcomes or harsh feedback from faculty. residents described compartmentalizing or distancing themselves from these feelings of inadequacy as a stress-coping mechanism. focus group interview six out of the eight psg participants attended the focus group interview. the analysis of the focus group interview reveals three major themes: unique sources of stress during anesthesia residency, importance of peer support, and integrating peer support into residency training. the principle themes and subthemes with corresponding exemplar quotes are summarized in table 3. theme i: unique sources of stress during anesthesia residency all participants believed that there are unique aspects of the canadian anesthesia residency training that make it particularly stressful. four sub-themes characterize the major sources of stress: the faculty-resident relationship, isolation, high stakes profession, and level of training. the nature of the faculty-resident relationship is identified as a source of stress in anesthesia training. the current canadian model of anesthesia training involves the assignment of residents to work one-on-one with a different faculty in the operating room on a daily basis. these time-limited but intense working relationships are recognized as being pivotal in either promoting or diminishing resident wellbeing. as a participant states: how you feel after a night on call is completely dependent on whom you’re working with overnight… [faculty] can teach you so much…or they can generate significant stress and you go home feeling burned out and demoralized. [qualitative research in medicine & healthcare 2018; 2:7417] [page 105] article table 3. themes and subthemes identified during focus group discussion. themes sub-themes exemplar quotes unique sources of stress during faculty-resident relationship training in anesthesia…especially a call shift…is like getting on a plane with anesthesia residency somebody, sitting next to them for 8-10 hours and having to work through life-threatening problems with them isolation as an anesthesia resident you’re in isolation. sometimes i don’t see the other people at my site because our break times are different, our lunchtimes are different… and it’s kind of sad… you know it’s fun joking around the ortho residents or the gen surg residents but it’s not the same. they just don’t know what i’m going through high stakes nights are stressful when you’re in anesthesia. sometimes you’re the most experienced person in the hospital… people think that it’s okay because if something happens i’ll just call the code team and anesthesia will come and take care of the patient differences according to level (second year residents) are the ones that feel the most isolated. they don’t all of training know each other and they have a completely different set of stressors. they bounce around from hospital to hospital and have to get to know all the staff. nothing and no one is familiar to them the importance of peer support validating experiences you don’t see or work with your peers, so it’s good to get perspective… decreasing isolation you realize that hey, i’m not crazy and it’s not just me. (see quote in text) peer learning more senior people (in the peer support group) can give you an idea of what to do in a situation then next time when that happens … you feel more comfortable… having seniors there gives perspective to the younger years integrating peer support into timeliness and timing it’s a balance between finding protected time that’s not infringing on people’s anesthesia residency training personal time. but somehow keeping it separate from academic time. because (peer support) isn’t really an academic activity. it’s a personal activity ideal composition and logistics as residents from the same specialty, you bond over similar situations… we’re all part of this marathon, progressing to the exam, the end of the road no nco mm er cia l u se on ly in this quote, the participant describes how the individually-based faculty-resident working model predisposes residents to feel primarily reliant on faculty for feedback, support, and validation. however, there is an inherent power imbalance between resident and faculty and an absence of the moderating influence of other peers that would otherwise be present in a team-based model. this combination leaves anesthesia residents particularly dependent on the quality of the faculty-resident relationship, especially with respect to their professional and personal self-worth. while on call, there is a similar dyadic model of faculty and resident making up the on call team. in describing how he experiences the stress associated with training in anesthesia especially while being on call, one participant states: training in anesthesia…especially a call shift…is like getting on a plane with somebody, sitting next to them for 8-10 hours and having to work through lifethreatening problems with them… he later elaborates: i think it’s just extremely difficult in our specialty because we work on-on-one with a variety of staff [faculty]…and sometimes you work with a staff [faculty] that you’ve never worked with before and it’s kind of like in anesthesia where you get to know your patient in 5 seconds and they’d have to trust you. under the current training model, the resident may or may not have worked with the faculty before, especially early in their training. this quote alludes to the intensity of having to work closely with a potentially unfamiliar faculty member under the already highly stressful demands of emergency and critical cases. how the faculty manages this working relationship is seen to be especially important in terms of the amount of the stress that the resident experiences. furthermore, participants believe that the current canadian model of anesthesia residency training predisposes to feelings of isolation from peers, contributing to increased stress and burnout. there are few opportunities to meet and work alongside their anesthesia peers in the day to day work. one participant comments: as an anesthesia resident, you ‘re in isolation… sometimes i don’t see the other [anesthesia residents] at my site because our breaktimes are different, our lunchtimes are different. i don’t see them until the end of the day. and it’s kind of sad…you know it’s fun joking around with the orthopedic residents or the general surgery residents but it’s not the same. while anesthesia residents do have the opportunity to work with trainees of other disciplines in the operating room, they do not have this opportunity with their anesthesia peers. this quote has a degree of poignancy that reflects a need for greater connection with other anesthesia residents as part of the daily work. with respect to the consequences of the individuallybased rather than team-based model of training, this same participant further expresses a sense of performance anxiety: i don’t get to see how peers at my level are working in the or. so that’s a little bit stressful....am i at the bottom of the pack? where am i? i have no idea. this quote is consistent with the insecurities around attaining professional competence previously seen in the facilitator notes. in the absence of working in a peer-based team, residents feel that they lack a gauge of their own performance and thus are dependent on faculty for validation and feedback on their progress. further, in addition to clinical teaching, the faculty supervisor is also responsible for evaluating the resident performance. therefore, the resident feels under constant scrutiny, which adds to the aforementioned sense of performance anxiety. the high-stakes nature of anesthesia practice was an additional source of stress, especially while on call. nights are stressful when you’re in anesthesia. sometimes you’re the most experienced person in the hospital…people think that…if something happens, i’ll just call the code team and anesthesia will come and take care of the patient. the anesthesia resident is called upon to manage critically ill emergency cases on their own without the benefit of a team response, in contrast with other specialties on call at the same time (e.g. medicine, surgery, obstetrics). because of the life-threatening nature of what they are expected to manage (such as emergent intubation on a trauma victim or massive hemorrhage in an obstetrical patient), residents often feel that they are ultimately responsible for life-saving procedures (or at the end of the line, as one participant expressed). this quote conveys the participant’s heavy sense of responsibility and pressure to perform while being on call as an anesthesia resident. finally, the participants acknowledge that there are differences in stressors according to level of training. in particular, the participants believe that pgy2 residents are particularly prone to stress and burnout due to the transition they have to make from basic clinical training to full time clinical anesthesia training. additionally, pgy2 are not familiar with the anesthesia faculty or the operating rooms in each of the hospital rotations. on the other hand, while senior residents have become more familiar with the training contexts and faculty, they have greater clinical and administrative responsibilities. they also have the additional stress of preparing for their specialty certification examinations in order to obtain their license to practice. [page 106] [qualitative research in medicine & healthcare 2018; 2:7417] article no nco mm er cia l u se on ly theme ii: the importance of peer support the participants recognize the importance of peer support – both formal and informal – as central in mitigating burnout and stress in residency. three subthemes relating to the value of psg are identified as: decreasing isolation, validating experiences, and peer learning. the issue of feeling isolated during anesthesia training is common amongst anesthesia residents’ accounts as the typical day is spent working exclusively with the assigned faculty supervisor. the participants describe how the psg meetings help mitigate this by creating a safe environment to interact. as one participant states: i think there’s a lot of value to meeting with other residents in multiple years…sharing experiences…you feel like it’s real and it’s safe. because the academic teaching sessions are separated by year of training, residents in different stages of training do not have many opportunities to interact. the psg meetings allowed opportunities for relationships and social supports to be formed and strengthened. importantly, the psg meetings allow participants to engage in narrative storytelling about their experiences, concerns and anxieties. as one participant says: sometimes i feel like i’m the only person who feels a certain way and then you realize you’re not. so it [the psg] helps in that way for sure. another participant adds: you don’t see or work with your peers, so it’s good to get perspective [from peer support groups]… you realize that hey, i’m not crazy and it’s not just me. these quotes show how residents derive a great deal of reassurance when they are able to share and validate each other’s experiences and emotions. the therapeutic value of psg is also reflected in the following: i found the sessions to be useful. because they would just go in whatever direction they needed to as issues come up. if nothing else, you just feel comfortable knowing you can just share experiences with your colleagues and…just talk about it and somehow you feel better. the act of discussing experiences with other anesthesia residents had an intrinsic value in allowing one to process and then let go of stressful experiences. participants believe that this helps keep them from ruminating about past mistakes or poor outcomes in order to effectively function in their work. with respect to the differences in the level of training, participants acknowledge the value of debriefing and learning from more senior residents. more senior people (in the peer support group) can give you an idea of what to do in a situation then next time when that happens…you feel more comfortable…having seniors there gives perspective to the younger years. senior residents derive a great deal of satisfaction from providing further perspectives and advice as well as learning from their peers at the different levels. in this way, psg allow residents to learn from each other’s experiences in ways that they could not get from the training program or their faculty alone. the residents highly value the peer learning and mentorship that resulted from these discussions. theme iii: the need to integrate peer support into residency all of the participants agree that it was important to integrate psg into the residency program scheduling in order to fully realize its benefits. they identify lack of time and timeliness as major barriers for effective psg participation. in order to enable maximal attendance, participants feel that it was important to create a protected time during the workday for the psg meetings to take place. sessions need to be offered frequently enough so that current issues could be discussed and addressed within a relatively short timeframe. hence ideal psg composition and logistics would consist of twice monthly meetings and be composed of anesthesia residents from all training years and allow for the anonymous submission of discussion topics. one participant brings up the issue of balancing competing interests in the logistics of scheduling into the residency training program: it’s a balance between finding protected time that’s not infringing on people’s personal time. but somehow keeping it separate from academic time. because (peer support) isn’t really an academic activity. it’s a personal activity. this quote reflects how the participants distinguish psg as separate from the academic teaching but relevant to improving the ability to cope with the training and clinical demands. yet, at the same time, it should not supplant the time used for other means of stress relief, such as spending personal time with family and friends. participants believe that psg meetings would be most effective if they consisted only of anesthesia residents rather than residents from other specialties because of the unique features and stressors associated with anesthesia training. a participant uses the metaphor of a marathon to describe anesthesia residency training: as residents from the same specialty, you bond over your similar situations…we’re all part of this marathon, progressing to the exam, the end of the road. [qualitative research in medicine & healthcare 2018; 2:7417] [page 107] article no nco mm er cia l u se on ly in using the phrase, we’re all part of this marathon, this participant emphasizes the importance of residents supporting each other as a collective toward the ultimate goal of completing the training and becoming certified anesthesiologists. non-participant survey twenty seven out of thirty eligible (90%) non-participant residents completed the survey (table 4). there was relatively equal representation of male and females from all postgraduate years, with most aged 25-35 years and slightly more than half were married, common-law or in a relationship. table 5 summarizes the survey responses. the majority of the respondents (96.3%) agreed that anesthesia residency training was a stressful experience and believed that they experienced burnout as a result. only 7.4% of respondents identified peer support as their preferred method of achieving wellness but, despite this, over 77% believed that participation in peer support groups would help to mitigate feelings of stress and burnout. nearly all respondents cited scheduling issues as the primary obstacle to peer support group participation. when asked what would enable them to participate in a monthly peer support group, most (88.9%) believed that peer group meetings should be scheduled immediately before, after, or during dedicated academic time. discussion anesthesiologists are recognized to be at elevated risk of stress and burnout compared to other specialties.5-8 compared to internists, anesthesiologists have an increased risk of suicide and drug-related death.11 anesthesiologists also have an increased risk of drug abuse.12,13 given that burnout appears to peak during training, anesthesia residents are at an even higher risk compared with practicing anesthesiologists.10,13 why anesthesia trainees are more prone to stress and burnout is not well understood, but some evidence suggests that there are certain aspects of anesthesia residency training that are particularly demanding. a swedish qualitative study of nine anesthesia trainees revealed difficulties associated with a sense of high demands, uncertainty about their roles, lack of support, and loneliness.5 likewise, although there is widespread recognition that peer support is important in mitigating burnout in other specialties, this has not been studied in anesthesia residency training.5,9,14-19 to better understand these issues in our residents, we undertook this study to explore, first, what are the anesthesia residents’ experiences of stress and burnout and their contributing factors and second, what is the value of peer support groups in mitigating residents’ stress and burnout. with respect to the first research question, we find evidence of high burnout risk and stress in our anesthesia residents. the psg participants had high mean scores on the pss and two out of three of the mbi subscales indicative of high burnout risk. interestingly, their mean professional accomplishment subscale score was indicative of low burnout. this finding is similar to a study on academic program directors, possibly suggesting that, in spite of significant stressors, our residents were able maintain a sense of self-efficacy and competence through their training.38,39 similarly, the majority of the surveyed nonparticipant residents perceived a high level of stress and burnout related to anesthesia training. these findings are consistent with pre-existing literature.4-10 our study is able to further elucidate the contributors of stress unique to the canadian model of anesthesia residency training that has not been previously identified in the literature. the analysis of the themes and subthemes drawn from the psg discussions and focus group interview reveals that the nature of the faculty-resident relationship, sense of isolation, high stakes profession, and level of training are contributing factors. a team-based model of training (consisting of clinical clerks, junior and senior residents) that is supervised by a faculty member on an ongoing basis is commonly used in specialties such as surgery and medicine. the team-based model of training allows trainees to work together, learn from, and support each other during the working day and while on call. in contrast, the canadian anesthesia training model is individually-based and primarily involves oneon-one supervision of residents on a daily basis with a different faculty. our participants perceived the individually-based anesthesia resident training model as contributing to a sense of loneliness and isolation from peers. this makes it hard to gauge one’s own performance and to obtain peer [page 108] [qualitative research in medicine & healthcare 2018; 2:7417] article table 4. demographics of non-participants (n=27). demographic n (%) postgraduate year (pgy) level pgy1 7 (26.0%) pgy2 6 (22.2%) pgy3 5 (18.5%) pgy4 5 (18.5%) pgy5 4 (14.8%) gender male 13 (48.1%) female 14 (51.9%) age (years) <25 0 25-30 10 (37.0%) 30-35 15 (55.6%) >35 2 (7.4%) relationship status single 11 (40.7%) unmarried but in a relationship 14 (52.0%) married or common-law 2 (7.3%) no nco mm er cia l u se on ly validation and support. in particular, this training model results in an excessive reliance on faculty for support and validation. at the same time, working with different faculty members on a daily basis may make it difficult for continuity of the training experience and for residents and faculty to foster close working relationships. therefore, our trainees identified the day-to-day quality of the faculty-resident relationship as being crucial to their wellbeing. poor faculty-resident relations are a major contributor to stress. the critical nature of anesthesia practice, risk of medical error, and the high stakes role that anesthesia residents play in emergency situations – especially while on call – are additional sources of stress. the level of training also affects the degree of stress that residents experience. junior residents may be particularly vulnerable due to their [qualitative research in medicine & healthcare 2018; 2:7417] [page 109] article table 5. perceptions of stress and burnout in anesthesia residency among non-participants in peer support groups. statement/question n (%) anesthesia residency is a stressful experience strongly agree 15 (55.6%) agree 11 (40.7%) neutral 1 (3.7%) disagree 0 strongly disagree 0 i experience burnout as a result of my anesthesia residency training strongly agree 11 (40.7%) agree 14 (51.9%) neutral 1 (3.7%) disagree 1 (3.7%) strongly disagree 0 i believe that participation in a peer support group would be helpful to mitigate current feelings of stress and burnout strongly agree 11 (40.7%) agree 10 (37.0%) neutral 6 (22.3%) disagree 0 strongly disagree 0 i believe that participation in anesthesia resident peer support groups will help me cope with future stressors strongly agree 2 (7.4%) agree 19 (70.4%) neutral 6 (22.2%) disagree 0 strongly disagree 0 what is your preferred method of achieving wellness? individual counselling 1 (3.7%) spending time with family and friends 17 (63.0%) exercise 7 (26.0%) meditation 0 peer support 2 (7.4%) i don’t feel that i am in need of wellness activities 0 other 0 what is the biggest obstacle that you perceive to participating in a monthly peer support group? fatigue 1 (3.7%) scheduling around personal/family commitments 6 (22.2%) scheduling around residency training responsibilities 18 (66.7%) i don’t feel that i would benefit from participating in a peer support group 2 (7.4%) other 0 what, if anything, would be required for you to participate in a monthly peer support group? scheduling of the group immediately before or after dedicated academic time 1 (3.7%) scheduling of the group during dedicated academic time 23 (85.2%) less frequent meetings 0 scheduling on the weekend 0 scheduling later in the evening 1 (3.7%) i am not interested in participating in peer support groups 2 (7.4%) if mcmaster university was to offer regular peer support groups, do you think it would be more valuable that they be offered to specific specialty groups or to residents as a whole? individual specialty groups 26 (96.3%) residents as a whole 1 (3.7%) no nco mm er cia l u se on ly relative inexperience, lack of familiarity with the faculty, training, and professional demands. with respect to our second research question, the value of psg in mitigating stress and burnout based on the mbi and pss measurements is inconclusive. in our psg participants, the pre-and post mbi scores were essentially unchanged. the post-pss scores actually showed a small increase but the clinical significance of these findings is indeterminant given the small number of participants. it is possible that the number of psg sessions and participants were inadequate to demonstrate a beneficial effect even if it exists or that psg surfaced rather than ameliorated tensions in the discussions. the benefits of engaging in psg were clearly stated by the participants during the focus group interview. the psg meetings create the opportunity for residents to meet that was otherwise not available during the work day. the therapeutic nature of telling one’s story is an important aspect of psg. through peer validation of shared experiences, participants felt a decreased sense of isolation as well as emotional release associated with talking about stressful events. in particular, junior residents benefitted from the perspective and support provided by their more experienced colleagues. our study findings show an apparent disconnect between the residents’ perception of the benefits of psg and their actual practice. despite over 75% of surveyed residents endorsing psg for mitigating stress and burnout, less than 10% of surveyed residents used this method. most indicated a preference for spending time with family and friends. likewise, we were able to recruit only eight residents for the monthly psg meetings. the survey and focus group interview findings suggest this disconnect can be attributed to a lack of allocated time as the major barrier to psg participation. therefore, timing and proper infrastructure for conducting psg are essential for its success. in particular, the importance of creating a defined space for peer support within residency training was emphasized. this space should be scheduled during working hours to avoid generating more stress by infringing upon personal time with family and friends. our study has several limitations. the small number of psg participants and uneven attendance within the nine meetings was insufficiently powered to draw any clear conclusions from the comparisons of the pre/post mbi and pss scores. while our interview and survey questions on the value of psg were open ended, we did not specifically explore the potential negative aspects of psg. in addition, self-selection bias could have affected our findings. the psg participants were predominantly female and did not include pgy 5 representation which made it difficult to generalize these findings to the remainder of our resident population. however, on the positive side, the 90% response rate of the non-participant survey suggests the findings are representative of this group of residents. despite these limitations, the findings from both the participant and non-participant groups consistently triangulated on several key points with important implications for anesthesia residency training programs. first, we clearly identify stress and burnout as serious concerns for residents that are related to unique aspects of anesthesia residency training. loneliness and isolation as an anesthesia resident was a recurrent issue in our study and identified elsewhere in the literature.5 this can be linked to an individually-based anesthesia training model that provides few opportunities for peer interaction and support. further, the stress of training in a high stakes profession is exacerbated by being on call alone as opposed to being part of an on-call team. to address this, our residency training program could consider modifications in the canadian training model that would allow a more team-based approach, such as staggered or team-based call schedules and increasing opportunities for residents to engage in peer-peer learning in clinical settings or in complex cases. an international comparative study of anesthesia training programs showed considerable heterogeneity across seven countries.40 all but two countries (uk and denmark) required direct faculty supervision of the trainees at all stages of training.40 a comparative study of canadian and thai anesthesia residency training revealed a team-based approach in the latter.41 given our study findings, it would be interesting to compare anesthesia resident stress and burnout rates in those countries with an individual versus team-based training model. second, because the current one-to-one training model may also result in over-reliance on the faculty-resident relationship for validation, our findings also highlight the importance of cultivating positive faculty-resident relationships to improve stress and burnout in trainees. faculty development and mentorship programs may enhance faculty awareness of the critical role they play in resident wellness and support. finally, although the mbi and pss data were inconclusive, the potential benefits of psg for mitigating stress and burnout were clearly expressed by our residents in the focus group interview and survey data. however, the feasibility of psg is hampered by lack of allotted time and infrastructure within an already busy clinical and academic training schedule. in order to properly realize and assess its value in mitigating stress and burnout, our findings suggest that our anesthesia residency program should provide adequate dedicated time and infrastructure to improve psg integration and maximize resident participation. given our preliminary findings, we believe that the role of psg in mitigating stress and burnout in anesthesia residency merits further investigation with larger cohort studies with comparative control groups. while our case study cannot generalize to others, canadian anesthesia residency programs are all based on a similar training model, and thus, our findings may inform their strategies for resident wellness. [page 110] [qualitative research in medicine & healthcare 2018; 2:7417] article no nco mm er cia l u se on ly since the completion of our case study, several strategies to support resident wellness have been implemented at our university. an office of resident affairs has been established at the university level that provides access to mentorship, career and supportive counselling, and wellness activities for residents across all disciplines. our anesthesia residency training program has recently created a position for a resident wellness coordinator who will be reviewing recommendations for supporting resident wellness. in addition, residents’ academic half-days have been changed to full days to allow further peer interaction and wellness-related programming in the latter part of the day. conclusions our findings confirm the high incidence of stress and burnout amongst anesthesia residents. consistent with previous literature. this alarmingly high prevalence has major implications for the health of residents, the profession and ultimately for patient care. while there are inevitable stressors that are inherently associated with a high stakes profession, we also identify potentially modifiable factors in anesthesia training such as the individuallybased anesthesia training model, the over-reliance on the quality of the faculty-resident relationship and the sense of isolation during residency. we recommend increasing team-based training strategies, faculty development and creating space for psg. at the heart of our findings is the need for greater connection and support, particularly from peers. our findings reflect the centrality of social interaction, language, and narrative story-telling in the construction of reality that is embodied in the social constructionist framework. psg offers additional opportunities for residents to make sense of their development as anesthesiologists, obtain validation and support in order to mitigate stress and burnout. although our residents valued psg, its full benefits were not realized in this study due the lack of allotted time. to maximize the potential effectiveness of psg, dedicated space and time must be created to ensure its integration into the residency training program. even though this is a case study, given the existent literature, we believe our findings are not unique to our context and can inform other anesthesia training programs. anesthesia residency programs should also explore other wellness strategies in addition to psg to ensure adequate support for their residents during their training. references 1. dyrbye ln, harper w, moutier c, et al. a multi-institutional study exploring the impact of positive mental health on medical students’ professionalism in an era of high burnout. acad med 2012;87:1024-31. 2. shanafelt td, hasan o, dyrbye ln, et al. changes in burnout and worklife balance in physicians between 20112014. mayo clin proc 2015;9:1600-13. 3. maslach c, jackson s, leiter m. maslach burnout inventory manual. 3rd ed. palo alto, ca: consulting psychologists press; 1996. 4. schernhammer es, colditz ga. suicide rates among physicians: a quantitative and gender assessment (meta-analysis). am j psychiatry 2004;161:2295-302. 5. larsson j, sanner m. doing a good job and getting something good out of it: on stress and well-being in anaesthesia. br j anaesth 2010;105:34-7. 6. larsson j, rosenqvist u, holmstrom i. enjoying work or burdened by it? 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[page 112] [qualitative research in medicine & healthcare 2018; 2:7417] article no nco mm er cia l u se on ly layout 1 introduction holistic health care can be traced back centuries, with some scholars naming aristotle as the first holistic physician, who understood people as a combination of spiritual and physical properties.1 the word holism was first used to describe medicine in 1952,2 and has since evolved from being a popular movement in the 1960s and 70s to being considered a professionalized entity in recent decades.3 although the term holistic is often used as an all-encompassing word for complementary and alternative medicine (cam),4 integrative medicine (im) is a term that blends alternative, complementary, and conventional, biomedical practices with a focus on patient-centered care. im places emphasis on the collaboration between patients and providers and relies on evidence-based scientific thinking.5 im providers encourage patients to take personal responsibility for their own health while advocating for the merits of integrative approaches that combine im and biomedicine. im providers often offer patients options for less expensive and less invasive medical treatments through integrative approaches of care, but not as a replacement for biomedicine. im physicians therefore become advocates for their practice, where they recognize and embrace the interaction between mind, body, and spirit in health and healing. in a comprehensive survey of im centers in the u.s., researchers identified over 60 centers that exist to focus on integrative care across america.6 with over a million medical doctors currently practicing in america, it is not surprising that im providers become advocates for their philosophies and medical practices as a normative approach to care. this study is designed to explore the perspectives of providers about the ways that they communicate advocacy for im in their lives and their medical practice. analysis of im providers’ narratives reveal their philosophy of im, in addition to when and where they advocate for im. we begin with a brief review of literature about im. next, we offer a description of the methodology utilized for this research. then we present the results of this investigation. finally, we close with a discussion of these results, including conclusions, implications, and directions for future research. advocating for integrative medicine: providers’ stories of resonance, negotiation, and community courtney hook,1 brielle plump,2 patricia geist-martin3 1scripps college of communication, school of communication studies, ohio university, athens, oh; 2department of language arts/communication, skyline college, san bruno, ca; 3school of communication, san diego state university, san diego, ca, usa abstract integrative medicine (im) is a holistic health care option that blends complementary, alternative medicine with biomedical models of care. many medical care facilities do not offer im treatment for patients, yet the demand for im is growing. therefore, im providers are in the position of educating and promoting im to patients and other medical practitioners. there is limited research literature focusing on how im providers communicate advocacy for im. therefore, this research is designed to explore the perspectives of providers about the ways that they communicate advocacy for im in their lives and their medical practice. interview data we collected at the center reveals the ways that im providers continuously advocate for im through their resonance with im philosophy, by negotiating systemic tensions that revolve around im, and by forming communities of practice with patients and other providers. results of this investigation offer insight about im, communication, and advocacy. correspondence: courtney hook, scripps college of communication, school of communication studies, 400 schoonover center, 20 e. union street, athens, ohio 45701, oh, usa. tel.: 740.593.4828 – fax: 740.593.4810. e-mail: ch915217@ohio.edu key words: integrative medicine; narratives; advocacy; health; qualitative research. contributions: the authors contributed equally. conflict of interest: the authors declare no potential conflict of interest. received for publication: 4 september 2017. revision received: 10 april 2018. accepted for publication: 10 april 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright c. hook et al., 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:30-44 doi:10.4081/qrmh.2018.7049 [page 30] [qualitative research in medicine & healthcare 2018; 2:7049] qualitative research in medicine & healthcare 2018; volume 2:30-44 no nco mm er cia l u se on ly the history of and advocacy for integrative medicine im has had a long history, evolving from the recognized value of holistic approaches to health care. advocacy for im has increased as both patients and providers have recognized the importance of integrating biomedicine with complementary, with complementary approaches. inevitably, im practitioners become advocates for im in their lives and in their practice of medicine. integrative medicine: origins, evolution, and critiques im is a complex, multifaceted approach to health care. the bravewell collaborative5 defines im as care that puts the patient at the center and addresses the full range of physical, emotional, mental, social, spiritual, and environmental influences that affect a person’s health (p. 6). this holistic approach to health is healing-oriented and relationship-centered, focusing on minimal invasion, toxicity, and cost to the patient.1 im is sometimes discussed in contrast to the biomedical approach, which has been termed the traditional, conventional, or western model of care. biomedicine is the predominant model taught to and used by physicians, focusing primarily on physiology, biochemistry, genetics, and other basic or so-called ‘hard sciences’.7 this dominant model of care approaches health through a scientifically-principled lens, representing one of many reasons biomedicine is often dichotomized from im. im does not function in lieu of biomedicine, however. scholars have argued against the bifurcation of biomedicine and im, encouraging patients and providers to treat both paradigms as complementary to one another.8 further, im is only one branch of various holistic practices, including, but not limited to, acupuncture, nutrition, meditation, yoga, and music therapy. it is critical to understand that, although these terms are often used interchangeably, each holds a unique relationship with conventional medicine. according to the national center for complementary and integrative health,9 complementary medicine refers to conventional medicine used in conjunction with non-mainstream practices whereas alternative medicine signifies the replacement of conventional medicine with non-mainstream practices. cam is particularly important to understand when defining im, which integrates the mission of complementary medicine through the mindful collaboration of conventional and complementary strategies. as baer3 indicates, im refers to efforts on the part of conventional physicians to blend biomedical and cam therapies or the collaborative efforts between biomedical physicians and cam practitioners to address health care needs of specific patients (p. xiv). im is therefore a collaborative effort that integrates biomedical strategies with cam modes of care. im has gained increasing popularity over the years from practitioners and patients alike. according to a survey conducted by the u.s. department of health and human services, 33.2% of adults and 11.6% of children in the united states use complementary health approaches.10 to address the multifaceted nature of im, the bravewell collaborative5 established several principles of im, including: i) a relational partnership between patients and practitioners; ii) the holistic consideration of health, wellness, and disease; iii) care centered around mind, body, and spirit; iv) an emphasis on healing sciences as a catalyst for the body’s innate abilities; v) more natural, less invasive interventions; vi) individualized and prevention-focused care; and vii) im practitioners exemplification of im principles through commitment to self-development and self-exploration. throughout what fadlon11 has coined the holistic turn, patients, providers, and medical facilities have spent the past several decades creating and refining these principles through the implementation of new ways to use biomedical modalities, while offering less invasive, less expensive treatments.1 importantly, im was not im was not intended to replace biomedicine, but work in conjunction with traditional methods where both modalities rely on evidence-based approaches and patient-centered wellness. collaboration between biomedicine and im has not been as fluid or amicable as proponents of im would like. early on in the introduction of im, biomedical practitioners were accused of incorporating alternative medicine into their own practices to serve the purpose of preserving the hegemony of medicine by co-opting the most attractive components of holism.12 research reveals that tensions exist in collaboration, legitimacy, consistency, and unification between biomedical and integrative providers, often due to a lack of support from the health care system;13 research is needed to understand how collaboration might occur between varied health models.14 however, increasingly biomedical providers seem to be in favor of institutional integration and collaboration with im providers.15-17 since its establishment, im has faced harsh and, in many cases, unfounded criticisms. in addition to macrolevel tensions and institutional constraints surrounding the inclusion of im into biomedical health care settings, patients and physicians find they must defend the use of and need for im on a day-to-day basis. as more and more physicians and patients utilize im, they discover ways to negotiate these tensions to negotiate these tensions by becoming advocates for integrative approaches to health. advocacy in health care settings advocacy has been studied in a variety of health contexts, with research focusing on interpersonal advocacy, self-advocacy, and institutional advocacy. interpersonal advocacy literature emphasizes how loved ones function as advocates for their family members, romantic partners, or children. in health care settings, interpersonal advocacy [qualitative research in medicine & healthcare 2018; 2:7049] [page 31] article no nco mm er cia l u se on ly can occur when partners advocate for one another during cardiology office visits,18 when parents advocate for children suffering from complex chronic illnesses,19 and when mothers become a voice for their children with down syndrome.20 research has also addressed self-advocacy behaviors among long-term cancer survivors,21 patients with aids,22 and young students with developmental disabilities.23 finally, research reveals how institutional advocacy occurs in organizations like planned parenthood24 and relay for life.25 advocacy plays an integral role in communication surrounding im between patients and physicians.26 unfortunately, research has found that patients who believe in im are hesitant to disclose their use of cam to primary physicians. a 2011 survey by aarp and nccam – available from: https://nccih.nih.gov/sites/nccam.nih.gov/ files/news/ camstats/2010/nccam_aarp_survey.pdf – exploring disclosure between people aged 50 or older and their health care providers revealed that nearly half of participants (47%) reported using cam within the past 12 months, but only one-third discussed cam with their health care provider. further, patients were twice as likely to initially bring up cam than their physician, which aligns with the notion that patients don’t bring it up because providers don’t ask.27,28 in a comprehensive review of literature assessing patient disclosure of cam to medical practitioners, robinson and mcgrail28 discovered the most common reason why patients do not disclose cam to conventional providers is fear of receiving a negative response. ironically, research reveals that 90.9% of people were found to discuss biomedical treatments with their naturopathic providers.27 scholars concerned with low patient disclosure regarding cam use have explored patient education interventions, which have been found to help patients become more proactive and effective in conversing with practitioners about cam.29 although health care systems have come a long way in the integration of complementary medicine with biomedicine modalities, progress still needs to be made in how patients communicate advocacy for cam and im. patient advocates of im are often most focused on taking responsibility for their health and well-being.1 willard30 contends those who follow integrative medical practices take control of their bodies. they do not place the fate of their bodies in the hands of a professional; rather, they participate in the creation and management of their health (p. 141). while this notion is written about patients, we believe im practitioners experience similar turning points in which they are left to take control of their professional fate. in the face of institutional and societal criticism, im practitioners often become advocates for themselves and their practice of im, yet there is limited research focusing on providers’ perspectives of their advocacy of im. we believe this perspective is best illuminated through providers’ narratives, wherein im practitioners tell stories of their initial interests in im and how those interests manifested in their educational and professional experiences. understanding advocacy through narrative while some conventional health care stakeholders may still believe that holistic, alternative, complementary, and im are illegitimate modalities of health, it is clear that im practitioners find themselves in the position of communicating advocacy for patient-centered health that centers around mind, body, and spirit. im providers become proponents of embodied health care while living as embodied characters in narratives that identify and divide, cooperate and compete, perform and motivate.31 providers’ experiences and stories of practicing im in predominantly biomedical settings reveal internal and external struggles that they face in attempting to legitimize their prescribed methods.13 advocacy is rooted in seeking commitment and support from others; being an advocate implies gaining political commitment and policy support through organized social action with the involvement of committed individuals, support from influential forces and the involvement of concerned sectors of society (p. 48).32 it becomes interesting to consider the ways in which providers accomplish advocacy in health settings that are predominantly staffed by providers with no im training or who do not believe in im. therefore, in an effort to better understand how im providers perceive the ways they communicatively construct moments of advocacy, this research focuses on the following question: rq: what do the narratives of im providers reveal about their advocacy for im? methods this research is designed to investigate how providers describe the ways they communicate advocacy for im. the interviews for this research were conducted with providers practicing im in a center for im. the research site the center (pseudonym) is part of a larger medical system that operates under a standard biomedical model of care via five campuses, a network of clinics, and over 2600 affiliated physicians. the center houses approximately twenty providers, eight of whom are medical doctors (mds), twelve of whom are nurses, im providers (e.g., acupuncture, nutrition, biofeedback, guided imagery, healing touch, and hypnosis, to name a few), and instructors of im classes (yoga, meditation, vegetarian cooking, qigong, and tai chi to name a few). the center serves over 2,500 patients monthly who typically access the center via referrals from the hospital. the center stands apart from the health care system it serves, located in a separate building, miles away from [page 32] [qualitative research in medicine & healthcare 2018; 2:7049] article no nco mm er cia l u se on ly any of the five five main campuses. the center was founded upon the philosophy that healing starts from within, and aims to blend evidence-based complementary and alternative therapies with conventional western medicine in a ‘best of both worlds’ approach. people visiting the center may be seeking treatment and relief for a range of illnesses, including cancer, diabetes, heart disease, weight management, gastro-intestinal concerns, acute or chronic pain relief, or stress; however, the clinic began through an effort to offer im treatments specifically to cardiology patients. participant information and recruitment the center agreed to participate in this research study with internal review board approval and under the supervision of one primary provider at the center. nine providers at the center agreed to be interviewed. of the nine providers, three are registered nurse practitioners and six are mds. of the mds, four are cardiologists, and two are family medicine practitioners. all providers have additional training, certifying them as im specialists, and have selected interests in pain management, acupuncture, biofeedback, hypnosis, reiki therapy, or other im modalities. the sample included five females and four males. no age or racial demographics were officially collected for this study, at the request of participants. interview data collection we extended our initial invitation to providers to participate in our study at one of their weekly meetings. we followed up by contacting providers via email or telephone. once participants replied to our correspondences and scheduled appointments, interviews were conducted at the center or in nearby locations at the convenience of participants. the narrative interviews were open-ended, encouraging providers to tell stories about their interest and training in im and their experience in providing im at the center.33 the interviews ranged in length from thirty minutes to an hour and forty-five minutes. we conducted several interviews with three specific providers because of their extensive roles either as our key informant coordinating our study or because of their roles as outgoing or incoming director of the center. data analysis once all interviews were transcribed, our data set included over ten hours of audio content and 167 pages of transcripts. we engaged in narrative analysis of the transcripts, locating the stories providers tell about advocacy, assuming that narratives or stories hold special powers as windows into the individual and social world (p. 4).34 our narrative analysis of the data occurred through three phases. phase one involved all three authors reading through the complete set of transcripts and open-coding excerpts of discourse where providers offered stories of some form of communicating advocacy for im. in phase two, the authors dialogued about their independent version of the patterned ways that the providers communicated advocacy for im. through this extended conversation, the authors identified and agreed upon the stories that represented three categories of communicating advocacy: i) advocacy as resonance with the mission of im; ii) advocacy as negotiation of dialectic tensions; and iii) advocacy as the formation of communities of support. in phase three, each author, responsible for one of these three categories, returned to the transcripts to locate stories that represented that category. as much as possible, we made an effort to include the voices of all nine providers. the results of this research, presented in the next section, elaborate the meanings of communicating advocacy in each of the three categories. communicating advocacy for integrative medicine trailblazing is a word that is often used to describe the work that providers engage in to advocate for the use of im.35 first, the results of this investigation reveal that providers communicate advocacy for im because they resonate with its mission. second, providers find themselves continuously constructing and communicating this advocacy in their provision of health care because of the challenges or tensions that often exist in the health care system. finally, providers discover that their advocacy is communicated and maintained through the formation of community with others, including providers, patients, and the public. each of the subsections that follow offer the stories providers tell that offer evidence of these three ways of communicating advocacy. advocacy begins with providers’ resonance with the mission of integrative medicine all nine of the providers in this study spoke of the ways that they became advocates for lifestyle changes and healing modalities that consider the whole person. they speak of something that occurred in their families, their socialization in medicine, a personal experience or pivotal moment, or just how they feel different in some way. for most, these were foundational ideas they continue to draw upon in their work as mds as nurses, or as cam practitioners. one of the predominant foundations that establishes providers’ advocacy for im is familial resonance. these stories reveal experiences with family members that set the stage for their advocacy. one provider describes how influential his grandparents were: you know, it started with my grandparents. they are very, very – you know, they were considered like the health nuts of our family. you know, there was like a funny joke about them when i was younger. but as i [qualitative research in medicine & healthcare 2018; 2:7049] [page 33] article no nco mm er cia l u se on ly got older i understood that they actually knew what they were doing. they were big into complementary alternative medicine. i learned a lot just kind of growing up in their house about you know, healthy, not healthy, the things that they did. i mean they – yeah. they avoided doctors forever. you know, so that’s kind of where it started. hughes spoke of the ways that his approach to medicine is to focus on lifestyle one-on-one with his patients; in his words, i’m not going to call it coaching, but you know, it just has to change or else the system is going to break and i think integrative is the way it’s going to end up. but grandparents were not the only family members that played a foundational role in providers’ advocacy. four other providers talked about the ways that parents influenced their advocacy for im. silverman suggested that his advocacy began with his dad’s career: my dad was a botanist so i think i had some interest in plants and stuff so. but when we came here, i really started working here without knowing much about integrative medicine. providers of im speak of the value of supplementing biomedicine with healing through plant-based nutrition, as well as chinese herbal medicine that uses different parts of plants to create teas, capsules, and liquid extracts. it is clear that this was an important foundation for silverman. this philosophy was also instrumental for iverson through her upbringing in an asian country: so my parents definitely instilled within me the foundations of good health as really the foundations of living in a healthful way. and they didn’t believe in using medications unless it was absolutely necessary. familial resonance became the foundation for a focus on im for two of the providers because of their experience with family illness or death. tali believes his advocacy is tied directly to his father’s death: i wanted to do medicine because of my dad’s history, we were in and out of the hospital forever…[my first year of] residency is when my father passed away. it just didn’t make sense to me…he had had open heart surgery for valve replacement, back surgeries, he had had all of his lung cancer site, he had afib, he had a pacemaker…but he was on all the right medicines and insulin and still died and i was sitting there when he died just scratching my head like where did we go wrong. in tali’s view, the problem was, not one doctor ever talked to him about the way he eats, what he was eating, about what he was not doing for exercise, about his weight problem. so, with this familial history, it is not surprising that as an im cardiologist, tali’s specialty is in lifestyle management and nutrition. one other provider who is a cardiologist describes the early deaths of her mother and brother as the beginnings of her understanding of the heart and cardiology as more than its biological functioning. i’ve kind of got a lot of loss in my early life. you know, i lost my mom when i was 8, my brother when i was 10, so i realized the importance of grief, and when i work with my patients, i really understand, you know, it got me thinking that broken heart is so much more than just oh gee, i have high cholesterol, and of course, the research supports that, right? so it made me aware of the dynamics that go on in families when there’s loss, when there’s grief, when someone is ill, you know, all of these things. halloway tells us that as a cardiologist she is always thinking about what she needs to do to keep people healthy: well i need nutrition, i need exercise, i need people to transform the way they respond to stress and tensions, whether it’s through prayer, yoga, meditation. she found that it was her own trauma and her experience of putting in stent after stent as a cardiologist that led her to advocate for what can be done for patients, besides drugs, and within families to help prevent coronary disease in the first place. familial resonance was not the only foundation for providers’ advocacy for im. five providers talked about the ways they felt different than others and that difference was foundational in feeling resonance with and advocating for any and all ways to offer healing and health to patients. halloway talks about the need she felt to do medicine differently: so all of these things and witnessing all of these things have really made me say, you know, we need to do medicine differently. we can’t just keep putting in stents and giving people drugs. i mean that’s what i was doing, and we need to complete the circle of care, which is what led to the birth of [the center]. halloway tells us that she is different than most doctors: i will never be a doctor that sees a patient every 15 minutes, get them in, get them out…i would rather go back to the old fish doctor’s office, to be honest with you, and get paid in eggs than practice medicine [that way]. tali tells us that he didn’t know he was interested in im, but that he knew that what he believed in about medicine was different than most doctors: i was just interested in more lifestyle, which is still my big focus. you know, with all the different aspects of im from energy work to different mind-body modalities to supplements etc., the lifestyle stuff of eating right, exercise and good coping with stress and anxiety and depression, that’s my passion. whether it is a passion or just a feeling, most of the providers in our study found themselves drawn to im in a magical kind of way. hadley speaks in the same voice as many of the providers when she tells us: i don’t know if you’ve had people tell you, but i think many of us have a strong belief that people find their way here for a reason, even the staff as well as the patients…i heard talk of starting an im center, and i don’t know. i can’t tell you what it was. i just knew it was a feeling of yes, this is where i need to be. [page 34] [qualitative research in medicine & healthcare 2018; 2:7049] article no nco mm er cia l u se on ly for some providers, the sense that there was another way of looking at things began much earlier, in some cases before they were even thinking about medical school. two of the providers described feeling different or feeling drawn to something different and wanting to look at things from a different paradigm. carson, the only provider we interviewed that began in im and then became an md says this: in high school and college, i became very interested in eastern philosophy and so i think that was sort of the gateway of there’s this whole other way of looking at things. so i began doing meditation, tai chi, and one of my professors said, you know, you should do a fellowship which allows you to go study other healthcare systems, knowing i was premed and going into this healthcare system. for another provider, morris, this whole other way of looking at things was part of his personality growing up: so then i go into residency and i mean these things are still in my head. i mean i was always kind of a goofy kid with strange ideas and, you know, interested in supernatural and whatever, you know? all the strange sci fi and stuff. so that’s kind of the paradigm that i came in to this with was, you know, this star trek mentality…i was very interested in like metaphysical approaches and the mind, what is the mind and so i was very abstract in my thought process. morris goes on to say that i always think outside of the box…i can’t think in a box and i can’t function that way. like many of the other providers in this study, he began to look for things that connected with the paradigm that resonated with his personality. what we learn then in this first category is that advocacy for im begins with providers’ resonance with the mission of im. sometimes that resonance is something that returns them to their upbringing, a parent’s or grandparent’s philosophy, or a unique personality trait. other times, it can be a pivotal moment or a personal experience where their passion clicks in, and they feel this strong resonance with im. their voices speak in unison as resonance with listening to people’s stories, considering the whole person and how they live their lives, partnering with and empowering people, and placing an emphasis on lifetime learning. the second category of communicating advocacy for im reveals that it isn’t always and easy road to hoe – that providers’ advocacy is continuously constructed by negotiating systemic dialectic tensions. advocacy is continuously constructed in negotiating dialectic tensions trailblazing for im providers translates to continuous negotiation of remnant and real dialectic tensions communicated in a health care system that values evidencebased medicine as historically represented well in biomedicine and more recently in cam. im has been described as a successful bridging of biomedicine and cam, but not without polarizing qualifications that are oversimplified36 and challenges to collaboration that are vital for integration.13 in this second category of communicating advocacy we focus on what we have located in providers’ narratives as the predominant dialectic tensions they negotiate with other providers, patients, families, and the general public. these interactions become avenues for advocating for im and their ideology of care. communicating about these tensions does not necessarily pit biomedicine and cam against one another, but instead the tensions reveal opportunities to open up dialogue and advocate for health care reform. as todorov37 suggests about stepping outside of the frame of them versus us: the relations between a and b are in a state of permanent formation and transformation; they continue to alter in the very process of communication (p. 55). providers in this study put into words their conceptualizations of these tensions and conversations they have with others about these tensions; in the process, the providers voice their visualization of the transformations in medicine they believe in, enact, and advocate for in the evolution of the health care system. the two subsections that follow offer providers’ stories of two prominent tensions. their communication reveals the ways that powerful economic and political interests still dominate the context of im13,38 and as a result, the tensions they must face enacting and advocating for im. what is clear is that there is a fine line between each of these two tensions; they overlap in many ways as revealed in our discussion of each. health-care with disease-care providers’ voice their interest in integrating biomedicine with the cam modalities – integrating health-care with disease-care. however, a tension exists in trying to accomplish both – the tension is often referred to as occurring between science and compassion or education and cost. part of the problem as halloway states is that the incentive in the health care system is on enacting a protocol that focuses on the disease and reimbursement without engaging in health-care (e.g., prevention or lifestyle education), which is typically not reimbursed: you must remember healthcare is not healthcare, it’s disease care. and it is still today, god willing it will change. but medicine is incentivized, physicians are incentivized for doing things for people, right. so i’m going in – you know, if you’re a cardiologist that practices lifestyle change versus a cardiologist that’s putting in stents, the lifestyle change cardiologist is making maybe a third of the money, maybe less. it is not surprising then that these providers believe in disease-care with health-care, which morris describes in this way: and to me, it really just means that you’re using the best of what’s available to the patient that has ac [qualitative research in medicine & healthcare 2018; 2:7049] [page 35] article no nco mm er cia l u se on ly ceptable risk to benefit ratios. and looking at the person that you’re dealing with and trying to find out what makes the best solution for that individual whether or not it’s a drug or a supplement or acupuncture or healing touch therapy, exercise. i mean it’s almost always a combination of those things…i mean i think the baseline should be that we treat everybody with respect [and] everybody should have a wonderful experience. and as morris points out through a metaphor, im doubles your work load: in music, there’s a thing that says enter through form and exit from form. and i think if you talk with a lot of artists, you have to learn…the rules before you can break them. and i…remain actually a very conservative physician. i remain very by the book. i think probably one of the most important things if there’s anything that i try to impart to the residents, fellows, students that come through here is that im means you’re doubling your work, you’re not cutting it in half. you are learning an entire other medical systems on top of what you should know and everything that you know that’s the foundation of it. while morris articulates the work he accomplishes as an im provider, his narrative also represents resistance to any simplification of im. a big part of the problem for im providers is that when more emphasis is placed on disease care, it becomes difficult to implement and advocate for the strength of im, which is communicating with the patient. one way this limitation shows up is in the restriction on the amount of time providers can spend with patients: you know, 10-minute visits, 15-minute visits and it’s ludicrous to me as someone trained in family medicine to say okay you’re supposed to be the quarterback of this patient’s team. you’re supposed to coordinate their care, oversee their continuity of care, manage all of their chronic diseases, take care of all their preventive needs in a span of once a year 45minute annual visits and then in between have a 10, 15-minute visit…you know, this is a model that is not going to be sustainable in the long run. i’m hopeful that with the healthcare reform, there’s really going to be a change. a second way communication is limited is the electronic medical record, which demands that the provider stand at the computer, logging patient information, but as iverson points out: it’s different, a little perhaps less personable than how we would have done things in the past, what we would catch one another, have an exchange with information. it’s supposed to be more efficient but sometimes there are big holes in what’s being recorded… it’s like a barrier that often stands in between us and people that we try to communicate with. a third way communication is limited circles back to the emphasis on disease-care and what can be reimbursed, as halloway points out: so this totally changes the incentives. the incentives right now are for me to do things to people. if i just put a pacemaker in you, a stent, a device, or even do a biopsy on your skin, i get paid a lot of money. if i say, talk to you about how to eat, exercise, and hear your life story, i get paid nothing, you know, so we’re going to have a big shift in his country, and they’re going to wake up, and they’re going to go holy cow, where have we been? essentially, it is through communication that im, disease-care and health-care, unite. it occurs in big and small moments where providers and patients communicate with one another. but as indicated by hadley, the evidence for that value does not exist: we don’t show – we don’t have the numbers, the data…it’s the million dollar question [what is success], and we haven’t created a way to capture that fully because it comes through interaction and verbally…we, as the staff, we know it, we recognize it because people will say, ‘this is the best thing i ever did for myself,’ or, ‘you can imagine how much i’ve changed,’ and from their point of view, they have. recently one man told me, ‘you know, you gave me an apple to eat one day when my blood sugar was low. i hadn’t eaten an apple in 20 years and now i’m buying apples.’ how do you measure something like that?…most of the feedback about success comes to us personally. people have come to this on their own terms and on their own time, states halloway. for all of these providers, disease care and health care belong together as a different model – they have come to it and hope that as health care reform takes places, others will too. all nine providers talked about how the practices they engage in represent the value they place on integrating medicine, the ways they blend disease-care with healthcare. but they also spoke of the emphasis that the u.s. health care system places on disease-care – in terms of what is reimbursed and the lack of emphasis placed on and reimbursement for integration. they describe the difficulty of communicating and creating partnerships with other providers and patients because of the politics surrounding cam and im. partnership with politics a second major tension that im providers describe is one where they advocate for partnership with others in utilizing im, but they describe how politics within the health care system interrupt or restrict that partnership. all nine providers would agree that if the im partnership was strong, they could work together politically to advocate for im within the larger health care system and for national health care reform. the words of providers help us to understand what they see as the composition of this tension. generally speaking, providers who only have disease[page 36] [qualitative research in medicine & healthcare 2018; 2:7049] article no nco mm er cia l u se on ly care in their tool bag and don’t partner with im providers, miss out on what might be needed in providing health-care for the patient. this tension between partnership and politics plays out between im providers and other medical doctors. halloway puts it metaphorically this way: they’re saying…the fruit on the tree is sick. we’re going to keep drugging it, doing surgery. we’re saying the food is sick. let’s fix the soil. and they will say we agree with that, but they don’t do it. they give it lip service. one issue that stands in the way of creating a partnership with other providers is a lack of understanding about what im is. tali describes it in this way: we’re not doing anything special here, we’re focusing on lifestyle and on nutrition and exercise. we’re getting people – we’re thinking outside the box if somebody doesn’t want to do a stent then we’ll say okay we will use supplements, you know? i mean i guess we don’t believe this is rocket science. we believe this is the way you should do medicine. tali talks about his efforts to advocate for a partnership with other providers by attending a medical group meeting, asking them hey, why don’t you guys hire our acupuncturists. they looked at me like i had literally asked them if mars was green. a second issue that restricts the partnership with other medical doctors is the assumptions they make about im. some, for example, see im as just one modality, for example acupuncture, as halloway points out: this is part of the confusion about im because when they look here, they just think oh, it’s about acupuncture. they don’t realize it’s about teaching people to eat, getting people exercising, helping people deal with their anger, their hopelessness, their stress, their depression, putting them together in community, all of which has beautiful research to support this, and the data supports it. other providers do not refer their patients to the center, partner with im providers, or advocate for im because they do not see it as related to the work they do. as carson points out: but i would say we still have folks that either don’t know about it, feel it’s a separate silo or they have been negatively impressioned that this somehow is not quite what is the true clinical medicine. so they don’t even mention it. so i think that is the key. one reason they may not mention it has to do with an assumption a provider might make about a patient choosing im as a replacement for biomedicine, as halloway cautions: so a lot of people in the beginning thought im was about substituting things. you know, instead of my chemotherapy, i’ll take herbs. instead of my statin, i’ll take red yeast rice. it’s got nothing to do with that. carson suggests that advocacy work means that the im providers need to consider how to build better bridges with all providers, especially the ones that see their work as unrelated to im. so it’s not just a matter of helping the physician identify if this is the right patient or illness that would benefit from coming to the center, but also getting that physician to realize that potentially all patients could benefit from that. however, as the im providers point out, building bridges can be difficult when there are still providers that battle the concept of im by making notes in the medical record you know, this patient is doing supplements, which have never been proven and i needed to stop them now. the tension between partnership and politics is also represented in the relationship between im providers and patients and the lack of a support system for patients who seek im. iverson describes it as a stumbling block for patients trying to get to im, but facing resistance from other providers: oh, there’s plenty of resistance within the [health care] system. a lot of my patients say i really have to work hard to get to you even within the [health care] family...because there’s still plenty of physicians within the [health care] system even ones that have been here for more than a decade who still don’t quite know that we exist or what do we do…so there’s still a lot of ignorance that exists even within [the health care system]…[others are] more resistant to sending because they feel like there’s still more that they could do. but the patient is like ‘no, i don’t want to have medications, i want to have these other alternatives’ and they’re like, ‘no, no, you don’t need to go over there,’ but they kept on persisting with it. it took them multiple visits with their primary care doctors to get them to be referred over to us. in the end patients suffer when they are not able to get the health care they need or desire, and when providers don’t understand or resist im. halloway speculates that a wide range of factors stand in the way of advocating for and providing the support system for patients to gain access to im. in her view, it begins at the top: if the senior administration doesn’t understand what im is about, it doesn’t get that im is about more efficient care that will cost less, focus on prevention, chronic disease management, then it will never go anywhere because they won’t invest in it. so partnership with administration is an important step in advocacy, but so too is the partnership with other providers, communicating the value that im has for patients, as halloway elaborates: we have to recognize that there are global healing traditions in the world, right, and these global healing traditions are called traditional chinese medicine, ayurvedic medicine, homeopathy, naturopathy, allopathic medicine which is what i was trained to do with medical school. so all of these global healing traditions have value. it’s only allopathic medicine that fo [qualitative research in medicine & healthcare 2018; 2:7049] [page 37] article no nco mm er cia l u se on ly cuses on disease. every other global healing tradition says prevent the disease, right? the best physicians are the ones that prevent the disease in the first place. the providers in this study see advocacy for im as advocacy for prevention and for managing the stress and depression that often accompanies disease. but as they point out, advocacy has been restricted by a lack of understanding of im, assumptions others have made about im, and even others feeling threatened by im. politics is represented here in these stories through all the ways that people communicate to express or protect their interests. but if we begin to see politics as the art of making what appears to be impossible possible,39 then politics and partnerships become powerful ways to advocate for im in health care systems and in health care reform. our third and final category of communicating advocacy reveals the ways in which providers describe their efforts to form communities of support for im. advocacy is maintained through the formation of communities of support at the same time that providers acknowledge the ongoing dialectic tensions they must communicatively manage, they also talk about the ways they have been successful in forming communities of support. the notion of community articulated by the providers in this study frames health issues and im within a capacities – rather within a deficits – perspective.4 these are represented in the stories of communicating advocacy through: i) a community of donors; ii) a community of providers; and iii) a community of patients. advocacy through a community of donors all nine of the providers in one way or another speak to moments when they advocate for their foundational im philosophy. in some ways, that is what our first category providers’ resonance with the mission of im speaks to. but here it is more than the origins of or resonance with this philosophy; these are moments where the words of the providers describe the origins of the center and what it took to advocate in ways that a community of donors could be established to guarantee its survival. the next two passages provide insight into the foundation of the center’s philosophy and the ways the two founders, halloway and lindholm communicated advocacy within the health care system and a community of donors. the words of halloway describe the community created through their initial advocacy: so lindholm and i literally sat at her kitchen table and we said we can’t just stop doing what we’re doing. we can’t at the end of this research say okay, study is over, no more yoga classes, no more exercise, no more cooking school. i mean we have created a community. people loved it. so we wrote the concept to creating a center for im and the vision that we came up with was healing people and changing lives through science and compassion. because we wanted that combination of everything evidence based and yet coming from love and compassion. coming from really connecting on the human level. after they gained the verbal support from the ceo of the medical system, he indicated that he had no money to support them. but that did not stop halloway and lindholm. they relied on their community to advocate for the support they needed. because of our research, we had some very sick patients who also happened to be wealthy and they said we want you to continue this work and they began to fund us and support us. what started as a very, what we call bohemia, you know, just a couple of us in the basement downstairs and we had no chairs or desks but what we had was plenty of love and a lot of heart, you know, and the patients responded to that…we got patients to come in and paint murals on the wall so it didn’t look like a blank wall. they came in and painted a beautiful mural. everybody was sort of part of it, you know. the community was very interested in finding a way for the two paradigms to work together. every single one of the providers told success stories, where their advocacy for im paid off in terms of reaching people and convincing them of the value of their foundational philosophy. in the passage below, lindholm speaks about one of those success moments when a large donation was offered after halloway presented their idea. so it was a very closed meeting only for these donors and administrators and so i sneaked in the back of the room and halloway was already on the podium and this was live. so she puts the first slide and it had golden gate bridge and it was god preaching the alternative and conventional medicine. so… she put the slide up [and said] boy that’s a bridge over troubled waters. and…everyone started laughing because it was – you know, halloway is a good presenter…it was so tense…and in front of me were two doctors who i know i had worked for years, very conservative doctors and they were now in administration so when she was doing this and showing like what we were planning to do, one of them looked at the other and said boy she has guts and the other one goes ‘yes’…so now we didn’t know if she was going to get booed out or get the standing ovation. she did get a standing ovation and one man got up and said i have never heard anyone, any doctor ever talking like this, so i’m going to give for your dream. i’m going to give half a million dollars. yeah. so halloway said ‘i don’t know who you are but can i give you a kiss. so he had become a major donor’. along with advocacy being communicated by the founders through a community of donors who helped establish the center and keep it running, advocacy was communicated through the community of providers. [page 38] [qualitative research in medicine & healthcare 2018; 2:7049] article no nco mm er cia l u se on ly advocacy through a community of physicians all nine providers offered many examples of pivotal moments when they communicated advocacy for im with each other or with physicians outside the center. each story built upon another with the underlying message that the community of im supporters is growing. these are stories of success, of confidence, and of hope for the future of im. one central locale of this advocacy is within the community of providers that work with patients at the center and believe in im, as iverson describes: well i envision it kind of a parallel track where we’re able to spend some quality time in team building more on a person-to-person level not so much as physicians or nurses or whatever. having that type of interaction to really have a more humanistic look at each person and then having some purposeful roundtable discussions on common problems that you see or some unusual problems that we don’t see and how can we collaborate and have not necessarily a formulaic approach or some sort of flow chart, but maybe there are different ways of looking at the same problems by different people. halloway elaborates on her vision of how this collaborative community would communicate: there’s a once-a-week sit-down collaboration. the whole team sits in there…and discusses with the patient. and so you have the psychologist giving their input. you have the nutritionist giving their input, the nurses giving they input, exercise physiology is giving input. everybody is discussing that patient, right? and that to me is the ideal. while this is a vision of the ideal, one of the providers describes how he sees this vision of a collaborative community being enacted in part at the center on a day-today basis: it’s all streamlined. so it’s like when we see a patient and we say the need x, y, and z. well x, y, and z is right below us and so when they go down and they get their training or they get their physical therapy or cardiac rehab, that nurse can like instantly call me, page me and say ‘yo, i just got this person on the treadmill and they’re not doing well.’ so instantly i can know. i can even go down there and see. so there’s always this communication going on with our patients…because we’re kept in the loop. so it’s good that we keep getting updates so that by the time we see them, we know they’ve been through all of this and we’re ready to see them. we don’t have to go hunting for what were the cardiac rehab results or what did the dietician say. it’s all there. in addition to communicating advocacy within the community of providers at the center, the providers voiced their triumphs in collaborating with physicians outside the center; they describe the advocacy that is communicated in a growing community of providers who are not trained in im, but now see its benefits and legitimacy. at times these pivotal moments focus on referrals and other times they focus on a particular patient another physician needs advice about. halloway describes how she built the center around cardiology, but one day a physician from another specialty called her: and then all of a sudden, a couple of years ago, i got a call from the head of the cancer center, and he said to me, ‘patient seems to think nutrition has something to do with cancer so can you provide us some nutrition classes?’ i said, ‘absolutely. happy to,’ you know, because it got to them, and now they say to me, ‘can you do a lecture on transforming stress on my body for cancer patients?’ this was a shift from physicians’ earlier position when the im providers sensed that the other physicians did not believe in what the center offers. carson described a similar pivotal moment: i mean just this week there’s been one doctor who’s been here the whole 12 years i’ve been here, who i don’t think has referred a patient, is sort of one of the old guard. and just this last week he…emailed me [about a] neuropathy patient where nothing has worked, ‘can you please see her?’ i was like wow, we got to pick that up and get her in as soon as possible and make this as positive a case. because that’s what goes back and he says ‘okay i don’t know exactly what he did or what the techniques are or the herbs, but it helped and she’s better, she’s safe and nothing crazy happened so i’m going to send more folks’. i think that’s the easiest way. one provider and one patient at a time, providers communicate advocacy for im, building a stronger and larger community of supporters. several of the providers described how often that shift in perspective to believe in and support im comes when a physician outside the center becomes a patient, as described here by tali: so…a week ago last friday i had a neurologist call me up…and she’s like ‘you know, i’m having palpitations. do you mind seeing me?’ so i said, ‘sure, come on over.’ so she comes over. i spent about an hour with her. i went through everything but her palpitations, because it’s everything else that causes it. so we spent a lot of time, she looks at me and she’s like ‘how do you do this? you spend all this time and you not once looked at the computer or look at your paper. you just talk to me.’ and i’m like ‘it’s because that’s what we do here. that’s listening to your patient, that’s the whole caring for the whole person, you know.’ i’m like ‘the palpitations are easy. i’ll get a holter, i’ll get an echo, i’ll test you for that. that’s what i’ve been trained as a cardiologist to do. it’s a harder to figure out why you’re truly in this situation, what else is going on, what else could be contributing that kind of thing. i don’t want to just give you pills.’ [qualitative research in medicine & healthcare 2018; 2:7049] [page 39] article no nco mm er cia l u se on ly she totally walked out with this epiphany…that’s our best tool is to have other physicians experience it. advocacy occurred in this connection between the im provider and the physician-patient; through communication and listening, a provider from outside the center joined the community of supporters. ultimately, this is the advocacy that most of the providers talked about a great deal – communicating advocacy with patients, one-byone, day in and day out. advocacy through a community of patients similar to their stories of pivotal moments with providers outside the center, im providers offered stories of pivotal moments with patients where they advocated for im. while most often these are success stories of reaching, educating, or transforming a patients, one in particular was striking in terms of what it offered about the philosophy of im and communicating with patients. hadley told us about a psychologist that works within the center, one-on-one with patients or conducting support groups for people in the intensive lifestyle management program. phillips described one gentleman who we knew he wasn’t getting it. he didn’t get the connection. he didn’t get the power of what the program could do for him. phillips said he is on an island surrounded by a mote, and there’s a wall. he’s got a wall up in front of him, and there’s broken glass on top of the wall. and you know, phillips encourages us to hold everyone in the space of possibility of change, and who knows when. at some time in the future, something that man did here will strike a cord and we can’t know how far down the road that might happen, if it does. but right now, any attempt to reach him over that high wall with broken glass on it, it isn’t going to happen because he won’t allow it. and it’s a pretty neat space to work in when you can respect everyone’s path…phillips has given us one of our many mottos and that is we drip irrigate here. and if people aren’t ready, it’s okay, we’ll respect that. drip-irrigating for phillips is a process of educating, offering resources, support, and encouragement, and opening spaces for them to discover what changes they can make. this was the case for a patient of carson’s named carol: we have a number of those patients who bounced between myself and…other pain specialists…[she] had been seen by me over ten years as well as multiple other doctors for injections, medications, fibromyalgia, low back pain. she was in a wheeled scooter. and what the collaboration taught me was it was failing. like everyone was doing things to her and she wasn’t doing anything for herself and we’re enabling that. [carol came back] four months ago and she’s morbidly obese…i said we have to stop talking about the pain and start talking about your metabolic workings…so she was one of our first new clients for this i-fit care model where she wears…a body media brace on her arm that tells her caloric burn rate 24/7…me the dietician, the exercise physiologist, the behaviorist all can see that, you know, real time. and we can give her suggestions online and she’s lost 50 pounds in a…rational period of time after entire life of never being able to lose significant weight or keep it off…until the patient was brought back in and said the real issue is can we get your lifestyle back in order and [now] she’s out of the scooter, she’s running on a treadmill. she actually volunteers downstairs to enroll new clients for us. in the process of advocating for this one patient, carson has helped this patient to become an advocate for other patients, supporting them toward the kind of success that she has had and expanding the community of patients who advocate for im. carson tells us about studies of patient satisfaction with im and what they find is that it is a lot about the communication and the connection and not being rushed. communicating advocacy for im is accomplished in a multitude of ways. the stories of providers in this study reveal that it begins with providers’ resonance with the mission of im, something that may occur when they are young, in their families, or even because of a pivotal moment in their personal lives. communicating advocacy is not always an easy task, especially when providers face systemic dialectic tensions that they must manage in their medical practice of integrating their biomedical expertise with their cam expertise. finally, and possibly most significantly, communicating advocacy is accomplished through communities of supporters – health administrators, donors, providers outside the center, and every single day, with patients. pivotal moments, epiphanies, vison, connections, and daily drip-irrigation are all important for communicating advocacy for im. discussion this research focuses on the narratives of im providers and what they revealed about communicating advocacy. first, advocacy narratives often begin with turning point moments involving family members and their health. participants relied on past histories and familial memories to construct narratives that revealed the emergence of their initial interests to study im. nearly every participant told stories that involved being drawn to im philosophies at an early age after being influenced by a family member, including: grandparents’ philosophy of life (hughes), parent’s teaching of healthy practices (iverson), a father’s career as a botanist (silverman), a father’s illness and death (tali), and a mother’s early death (halloway). second, the results revealed that providers engage in advocacy through a continuous process of communicating to manage tensions and contradictions that arise in a health care system that has not fully embraced [page 40] [qualitative research in medicine & healthcare 2018; 2:7049] article no nco mm er cia l u se on ly im. finally, the results revealed the importance that im providers place on communicating in ways that construct a community of professionals who advocate for im. in the subsections that follow, we offer conclusions that we draw from these results, theoretical and practical implications of the results, and the directions for future research. conclusions providers’ narratives offer insights about the significant role that advocacy for im plays in family communication, professional communication, and in provider-patient communication. two predominant conclusions can be drawn from these results. first and foremost, providers’ narratives reveal that advocacy is centered on patients. this is not surprising, since patientcenteredness is a cornerstone of im as a health care philosophy and approach. the results reveal that im providers not only treat their patients with an integration of biomedicine and holistic therapies, but also strive to empower patients to take an active role in their health management; this is a tenant that aligns with the notion that im patients are given the agency to take control of their own health.30 we see this through tali’s story of meeting with a coworker and neurologist experiencing heart palpitations, as well as carson’s narrative surrounding carol, a patient who has had appointments at the center for over a decade and has since become a volunteer to help with im client enrollment. the story of carol is particularly powerful when considering how advocacy functions on a relational level, where her experience of healing through im helped her to become an advocate for prospective im patients. although provider advocacy narratives often center around success stories with patients with the central mission of getting physician[s] to realize that potentially all patients could benefit from [im], being an advocate of im also involves being content with patients who are not convinced of the merits of im: if people aren’t ready, it’s okay, we’ll respect that. therefore, im providers’ narratives of advocacy often focus on patient stories and the role the providers play in changing patients’ lives. a second conclusion that can be drawn from the results of this study is the need for innovative changes in the ways that medicine is practiced in the u.s. while these providers’ personal histories provided an invaluable foundation to draw upon in communicating advocacy for im, they all faced structural roadblocks everywhere throughout the health care system. for one, the way that medicine is practiced often creates a series of silos based upon specializations, where communication and advocacy is restricted. the providers in this study spoke to the difficulty of reaching physicians and patients who are localized in specific specialties such as cancer, rheumatology, neurology, and many others; advocacy for most of the providers in this study meant preaching to the choir of people who already believed in or were curious about im. second, the center is decentralized and segregated from the other locations of this health care system. while some of the physicians believe that there may be value for patients in centralizing im so that it is offered at every one of the five campuses, practically this would be difficult, not only in terms of staffing each with sufficient cam modalities, but also because of the limited number of im providers that work within the system. third, and finally, the organization of the u.s. health care system does not facilitate the building of relationships with physicians. while this may be a goal for both providers and patients, especially in advocating for im, it is often restricted by appointment time limitations, lack of continuity in health maintenance organizations for consulting with the same physician at each appointment, and lack of reimbursement for cam modalities in most health care plans. while these two conclusions offer insight into the communicative processes that participants engage in to advocate for im, a range of theoretical and practical implications for im advocacy can be drawn from these results. the results of this investigation offer a number of implications for theory; we will focus on two: narrative medicine and dialectic theory. first, as a study that focuses on narrative, this investigation revealed that im providers offer stories of their experience with patients that reveal their narrative competence. halloway tells us that the book she has published is based on the true stories of patients whose lives changed drastically because of their use of im. as well, all nine providers reveal in some way that they are practicing narrative medicine with empathy, reflection, and professionalism. rita charon, md suggests that along with scientific ability, physicians need the ability to listen to the narratives of the patient, grasp and honor their meanings, and be moved to act on the patient’s behalf (p. 1897).40 tali tells the story of spending an hour treating another physician, and her asking how she does it – spend this much time, not look at the computer, and just talk. tali responds by saying it’s because that’s what we do here. that’s listening to your patient, that’s the whole caring for the whole person. narrative medicine is growing in popularity, especially through the work of charon41 and colleagues in the program in narrative medicine at columbia university.42 however, it is important to consider the larger structural inequalities in our health care system that may constrain providers’ abilities to enact narrative medicine, no matter how much they advocate for it.43 as well, it is sometimes difficult for people to listen in socially just ways…to listen to stories that challenge them, stories that are from the margins, stories that are traditionally silenced.44 sayantani dasgupta, md suggests that providers need narrative humility so that they may improve relationships with patients, deepen their listening, deepen their medical practice, and become more accurate and effective at their diagnosis and treatment. [qualitative research in medicine & healthcare 2018; 2:7049] [page 41] article no nco mm er cia l u se on ly a second important theoretical implication is tied to dialectic theory, which relates to the contradictions or tensions that people may experience as they communicate with one another in relationships.45 as our results revealed, communicating advocacy is often complicated by tensions between disease care and health care, between partnerships and politics, between science and compassion, and between education and cost. these dialectic tensions fold into one another in ways that complicate communication and advocacy. this is especially the case because of how providers’ stance within these dialectic tensions is very much tied to their professional and personal identities, further limiting their communication of advocacy for im. the stakeholders that might find valuable insight from the providers’ narratives in this research may include other providers, health administrators, and of course patients and their families. we learn through this study that advocacy is never easy; therefore, the two practical implications we offer are tied to what we learned from providers about enacting advocacy. one practical implication of this research is that even though all the providers in this study described personal or familial histories that created a strong foundation for their philosophy and practice of im, translating that philosophy to strategies for communicating advocacy was a hit and miss process of learning the power of the story. providers in this study lamented the fact that currently there is no system in place for documenting the success stories of im. while dialogue has ensued about the ways that cam can be evidence-based medicine throughout the u.s.,46,47 most health care systems have not developed or implemented systems for documenting evidence of the success of cam and im. providers in this study suggest that advocacy for im will take off and be much easier to accomplish with more intensive publication of scientific evidence of its value, not just in terms of clinical randomized trials, but in the systematic documentation of patients’ stories of the value of im. one way of accomplishing this documentation is through studies such as this one. the providers in this study initially were hesitant to share details of their experiences with im, including some of their specific concerns with the organization and functioning of the center. yet, with time and rapport, each participant began to share ideas, that they had never verbalized before. over the course of the interview, providers’ descriptions eventually began to deepen and reflections became more vivid. therefore, a second practical implication of this research is for health care systems to create specific opportunities for providers to share their advocacy narratives. these opportunities would offer providers a chance to reflect, interrogate, and visualize collectively. in this way, communication of advocacy within the health care system may alleviate some of the problematics im providers have encountered, including assumptions that im providers are competing with their specialty, im providers are stealing patients, or im providers are quacks, grass pushers or herbal freaks. in this way, health care providers, along with other members of their communities, could begin to uncover new motivations and opportunities for advocacy. additionally, since providers favor stories about patients when communicating advocacy, im physicians might learn more about their own identity as an advocate by inviting patients to share narratives of their experiences with im. there is merit in discovering how patients advocate for im similarly or differently from providers, and how im practitioners can refine their own advocacy messages through conversations with patients about their own stories of advocacy with families and friends. these theoretical and practical implications speak to the insights offered by the results of this study; as well, it is insightful to consider potential directions for future research. first, future research could investigate the communication of advocacy by im providers across facilities, regions, and countries to learn how they may be similar or different from the experience of these providers. investigating the stories of im providers with different histories, biomedical specialties, and cim modalities would offer a comprehensive understanding of how im is approached, constructed, and advocated for within the health care community. second, insights could be gained by hearing the voices of administrators staffing the local health care system, but also the voices of health care policy makers and administrators of the national health care system. future research could offer insights by including these voices, either through interviews or through participant observation. it would be fascinating to explore how patients and providers co-construct advocacy during interactions and how patients become agents and advocates of their own health care. future studies surrounding im advocacy should therefore incorporate other voices and narratives from the various stakeholders and health care workers that are involved in the day-to-day functions of the center, including administrators, nurses, technicians, and assistants. im is an approach to health care that has become part of nearly one-third of american’s lives.10 while several studies have revealed patients’ communication strategies surrounding im, we hope to pave new ground in understanding what im providers’ narratives reveal about the ways in which advocacy is constructed and communicated. if the hope of im providers is to offer im through every health care system and every insurance provider, we must learn more about the communication of advocacy – where it begins and how it is constructed by the providers who intend to help us heal. references 1. rakel d. integrative medicine. philadelphia, pa: elsevier; 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2016. available from: http://nccam.nih.gov/ 10. clarke tc, black li, stussman bj, et al. trends in the use of complementary health approaches among adults: united states, 2002-2012. natl health stat rep 2015;79:1-16. 11. fadlon j. negotiating the holistic turn. albany, ny: state university of new york press; 2005. 12. alster kb. the holistic health movement. tuscaloosa, al: university of alabama press; 1989. 13. geist-martin p, bollinger bj, wiechert kn, et al. challenging integration: clinicians’ perspectives of communicating collaboration in a center for integrative medicine. health commun 2016;31:544-56. 14. gaboury i, lapierre lm, boon h, moher d. interprofessional collaboration within integrative healthcare clinics through the lens of the relationship-centered care model. j interprof care 2011;25:124-30. 15. barrett b. alternative, complementary, and conventional medicine: is integration upon us? j altern compl med 2003;9:417-27. 16. keshet y, ben-arye e, schiff e. can holism be practiced in a biomedical setting? a qualitative study of the integration of complementary medicine to a surgical department. health 2012;16:585-601. 17. keshet y, ben-arye e, schiff e. the use of boundary objects to enhance interprofessional collaboration: integrating complementary medicine in a hospital setting. sociol health ill 2013;35:666-81. 18. checton mg, greene k, carpenter a, catona d. perceptions of health information seeking and partner advocacy in the context of a cardiology office visit: connections with health outcomes. health commun 2017;32:587-95. 19. rafferty ka, sullivan sl. ‘you know the medicine, i know my kid’: how parents advocate for their children living with complex chronic conditions. health commun 2017;32: 1151-60. 20. isgro k. from a caretaker’s perspective: mothers of children with down syndrome as advocates. women lang 2015;38:63-82. 21. borofka ke, boren jp, ellingson ll. ‘kind, sensitive, and above all, honest’: long-term cancer survivors’ quality of life and self-advocacy. commun res rep 2015;32:373-8. 22. brashers de, haas sm, klingle rs, neidig jl. collective aids activism and individuals’ perceived self-advocacy in physician-patient communication. human commun res 2000;26:372. 23. kleinert jo, harrison em, fisher tl, kleinert hl. ‘i can’ and ‘i did’: self-advocacy for young students with developmental disabilities. teach except child 2010;43:16-26. 24. brandhorst jk, jennings fj. fighting for funding: values advocacy and planned parenthood’s right-to-life. pub relation rev 2016;42:723-33. 25. mckeever b. from awareness to advocacy: understanding nonprofit communication, participation, and support. j pub rel res 2013;25:307-28. 26. sharf bf, geist-martin p. integrative medicine. in: thompson t, ed. encyclopedia of health communication, vol ii. thousand oaks, ca: sage; 2014. pp 727-729. 27. busse jw, heaton g, wu p, et al. disclosure of natural product use to primary care physicians: a cross-sectional survey of naturopathic clinic attendees. mayo clin proc 2005;80:616-23. 28. robinson a, mcgrail mr. disclosure of cam use to medical practitioners: a review of qualitative and quantitative studies. complement ther med 2004;12:90-8. 29. ho ey, d’agostino ta, yadegar v, et al. teaching patients how to talk with biomedical providers about their complementary and alternative medicine use. patient educ counsel 2012;89:405-10. 30. willard be. feminist interventions in biomedical discourse: an analysis of the rhetoric of integrative medicine. women’s stud commun 2005;28:115-48. 31. harter lm, bochner ap. healing through stories: a special issue on narrative medicine. j appl commun res 2009; 37:113-7. 32. servaes j, malikhao p. advocacy strategies for health communication. pub relation rev 2010;36:42-9. 33. tracy sj. qualitative research methods: collecting evidence, crafting analysis, communicating impact. malden, ma: wiley-blackwell; 2013. 34. robert d, shenhav s. fundamental assumptions in narrative analysis: mapping the field. qual rep 2014;19:1-17. 35. sharf bf, geist-martin p, cosgriff-hernandez kk, moore j. trailblazing healthcare: institutionalizing and integrating complementary medicine. patient educ counsel 2012;89: 434-8. 36. rogier hoenders hj, appelo mt, de jong jtvm. integrative medicine: a bridge between biomedicine and alternative medicine fitting the spirit of the age. sociol mind 2012;2: 441-6. 37. todorov t. theories of the symbol. ithaca, ny: cornell university press; 1984. 38. waitzkin h. the second sickness: contradictions of capitalist health care. lanham, md: rowman & littlefield; 2000. 39. rodham h. student commencement speech, wellesley college. wellesley, ma; 1969. 40. charon r. narrative medicine: a model for empathy, reflection, profession, and trust. jama 2001;286:1897-902. 41. charon r. narrative medicine: honoring the stories of illness. new york, ny: oxford university press; 2008. 42. charon r, dasgupta s, hughesn n, et al. the principles and practice of narrative medicine. new york, ny: oxford university press; 2016. 43. ensign j. the problem(s) with narrative medicine. 2014. available from: https://josephineensign.com/2014/07/16/the-problems-with-narrative-medicine/ [qualitative research in medicine & healthcare 2018; 2:7049] [page 43] article no nco mm er cia l u se on ly 44. dasgupta s. narrative medicine, narrative humility: listening to the streams of stories. creative nonfiction: true stories, well told 2014;52. available from: https://www.creativenonfiction.org/online-reading/narrative-medicine-narrative-humility. 45. baxter la, montgomery bm. relating: dialogues and dialectics. new york, ny: guilford; 1996. 46. national center for complementary and integrative health. evidence-based medicine: literature reviews. 2017. available from: https://nccih.nih.gov/health/providers/litreviews.htm. 47. yamey g. can complementary medicine be evidence-based? west j med 2000;173:4-5. [page 44] [qualitative research in medicine & healthcare 2018; 2:7049] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2018; 2:7572] [page 73] introduction what is meaningful work? the field of organizational development uses the concept of meaningful work to study how people create positive work environments.1-6 these thoughts align well with meaningful work as defined by steger et al.7 and martela and pessi8 who steered away from the study of what makes workplaces negative to focus on the positive impact of meaningful work. meaningful work in the organizational development sense, however, might be individualized and not involve the act of helping others in a charitable sense at all.7,8 meaningful work can be very personal, and people do not necessarily share the same experiences with the same kinds of work. each individual decides what work is meaningful to him or her, and will convey that understanding in different ways. as martela and pessi note, it could involve either work that helps one achieve self-realization or work that makes one feel as though they are contributing to a broader purpose.8 by examining commonalities in language use and word clusters among groups, we discovered what perspectives of meaningful work in a high-burnout academic medical center: a discourse analysis timothy atkinson,1 molly gathright,2 james clardy,2 carol thrush,3 erick messias2 1department of internal medicine; 2department of psychiatry; 3department of surgery, university of arkansas for medical sciences, little rock, arkansas, usa abstract we conducted a discourse analysis of meaningful work from the perspective of healthcare workers in an academic medical center where we previously observed relatively high levels of personal burnout (52.7%) and work-related burnout (47.5%), all based on the copenhagen burnout inventory survey. burnout is often studied as psychological condition characterized by exhaustion, depersonalization, and feelings of inefficacy or lack of career achievement, but as demonstrated in this analysis, burnout loses its meaning because healthcare professionals provide a robust account of what makes work meaningful to them despite their prevalence of burnout. healthcare professionals exhibit a higher level of burnout compared to workforce members in other organizations. physicians specifically are at high risk for exhibiting symptoms of burnout and work-life imbalances. in addition, burnout manifests itself early in the physician’s career compared other occupations, and in our sample was prevalent among nurses, too. in this discourse analysis of written answers to the survey question, in ten words or less describe what makes your work meaningful? healthcare professionals provide an account of meaningful work that maintains its value in this environment despite the level of burnout, especially when healthcare professionals can use their hard-earned knowledge to make a difference in the lives of people, and observe the results of their work, which is beyond just taking care of patients. nurses accounted for meaningful work in terms of close connections with patients, while being closely focused on ability to provide professional care and experiencing the outcomes associated with that care, and knowing that they have done a good job. physicians were patient focused, and they expressed meaningful work in terms of making a difference, and using their abilities to help patients. basic scientists accounted for meaningful work in terms of their training and abilities to use science for the betterment of others in society. correspondence: timothy atkinson, department of internal medicine, university of arkansas for medical sciences, 4301 west markham, slot 509 little rock, ar 72205, usa. tel.: 501.686.6052. e-mail: tnatkinson@uams.edu key words: meaningful work; discourse analysis; positive organizational scholarship; burnout; well-being. contributions: ta: conceptualization of the burnout and meaningful-work studies, qualitative design, research questions, survey instrument design, edited and submitted the irb protocol, interpretations, prepared the corpus, text analytics, discourse analyses, literature review, wrote and prepared manuscript; mg: conceptualization of the burnout and meaningful-work studies, qualitative design, research questions, survey instrument design, edited the irb protocol, interpretations; jc: conceptualization of the burnout and meaningful-work studies, qualitative design, research questions, survey instrument design, edited the irb protocol, interpretations; ct: conceptualization of the burnout and meaningful-work studies, qualitative design, research questions, survey instrument design, wrote and edited the irb protocol, interpretations, edited manuscript; em: statistician and data analyst, checked the interpretations, edited manuscript. conflict of interest: the authors declare no potential conflict of interest. funding: none. received for publication: 21 may 2018. revision received: 30 july 2018. accepted for publication: 30 july 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright t. atkinson et al., 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:73-83 doi:10.4081/qrmh.2018.7572 qualitative research in medicine & healthcare 2018; volume 2:73-83 no nco mm er cia l u se on ly meaningful work might mean for groups or organizations in an academic medical center. along the way we discovered that meaningful work in the good works sense is really the soul of meaningful work in the technical sense, too. whether talking about meaningful work as an organizational phenomenon or as a charitable act, we found that the selfless’ focus on service to other people is the core to perceptions of meaningful work in this particular organization. literature review in this literature review, we set the parameters and background for our overall qualitative question, but we wanted to avoid finding information that would influence our interpretations of the voices of our respondents. below, we examine the effects of meaningful work, and some of the definitions in general, but does not necessarily say what meaningful work is for a particular population. the rest of our argument develops by way of written discourse and texts gathered during the study. workplace spirituality and meaningful work meaningful work is often studied as one of three dimensions of workplace spirituality (wps) along with a sense of community, and value of organization.9 within wps, meaningful work is often associated with greater job satisfaction and greater work engagement.10,11 hassan et al. noted that it is important to emphasize a person’s values, incorporating their sense of community to produce meaningful work.9 further, kazemipour and amin, studying wps, noted that meaningful work contributes to organizational citizenship behavior, another positive workplace concept.12 none of these studies seem to have isolated meaningful work from the other components of wps. one explanation could be that wps instruments included items measuring meaningful work, which are normed with these other dimensions of wps. another explanation could be because the focus of was not on meaningful work alone, but rather on mediating factors such as trust and work engagement, or outcome measures such as organizational commitment. steger et al.7 and martela and pessi,8 on the other hand, do isolate meaningful work into its own components: my work has significance, my work contributes to broader meaning in life, and my work contributes to the greater good. we used steger et al.’s wami study as the guiding document for meaningful work for our qualitative study because of the focus on meaningful work alone.7 still, these parameters say nothing about the actual meaningful work people are doing in an organization. the range of meaningful work is vast, given the number of occupations and careers that exist in our world. wellness and meaningful work it is clear that meaningful work, however it is defined, is necessary for retaining and attracting people to the healthcare workforce just as much as anywhere else.13 academic medical centers work at the crossroads of education, and the time-constrained activity of patient care, and the need to nurture relationships, education, and self-reflection for a balanced and more meaningful work environment.14 the construct of meaningful work is often studied as an important component of wellness and as a way to combat burnout. for instance, using the effort-reward imbalance (eri) model, rasmussen et al. studied emotional exhaustion (ee) and depersonalization (dp) (two maslach burnout dimensions)1,2 in psychosocial oncologists and found that high levels of meaningful work predict lower levels of ee and decreased dp, however only 2% of the variance was accounted for using the eri model.15 the authors concluded that meaningful work could be added as an extension of the eri model. in a study of u.s. neurologists, busis, shanafelt, keran et al. found that burnout was indeed reduced because of the meaning neurologists found in their work.16 but the unanswered question in these studies is how people talk about meaningful work in healthcare. they presented no discourse or text about what the respondents feel meaningful work is. also, these studies are based on specific specialty groups within healthcare who might talk about meaningful work differently than other groups in healthcare. in a study more closely aligned with ours, schrijver, brady and trockel conducted 19 focus group sessions across 17 clinical departments and found that participants’ meaningful work emerged as a key component to work motivation.17 in contrast to these findings, meaningful work can sometimes have a negative impact on employee wellness; jones and griep call this relationship the double-edged role of meaningful work.18 work can become so important, meaningful, and absorbing, that other aspects of wellness are compromised. cain, taborda-whitt, frazer, et al. supported these findings, noting that their qualitative data from a mixed methods study illustrated an association between meaningful work and feelings of depletion.19 jager, tutty and kao also found that engrossing meaningful work and a sense of calling could both be negatively associated with each other, noting that higher burnout rates overpowered the sense of meaningful work.20 bendassolli also found that meaning making in work can be hindered by the way a person experiences emptiness.21 it is interesting to note at this point that when we begin to describe our interpretations of the texts and discourse, there can be some sense that the pursuit of meaningful work is also contributing to burnout in some people. in other words, the unintended consequences of pursuing meaningful work could result in negative outcomes, and people with a passion about the elements that make their work meaningful could actually be experiencing burnout. connectedness and meaningful work further, in a qualitative research study that employs a categorical content analysis, van iersel et al.22 noted that scant qualitative evidence exists about nurses’ perceptions [page 74] [qualitative research in medicine & healthcare 2018; 2:7572] article no nco mm er cia l u se on ly of meaningful work. their research is important for the current study because it is also qualitative, used a content analysis method, and focused on a prominent group in our sample, nurses. the qualitative themes that emerged from the van iersel study were labeled as connections, contributions and recognition.22 these are very general terms that do not necessarily describe the actual tasks that contribute to meaningful work. van iersel et al.22 concluded that meaningful work is most likely present in an organizational environment that supports continuous learning, teamwork, and effective management, but task orientation, stressful relationships and divisive management likely hinder meaningful work. the authors used the following labels to define nursing roles such as advocate, catalyst and guide and caring presence. this study echoes other studies that assert the importance of connections and collaborations in healthcare to create meaning in work.23,24 meaningful work, meaning making, connectedness and even transcendence are all associated outcomes of spirituality in the workplace, which we discussed earlier.23 other studies have shown both positive and negative effects of strong connections, especially tummers and bronkhorst, who used the leader-member exchange leadership model to study meaningful work, and noted a strong connection with the leader can often result in meaningful work.25 in summary, meaningful work is important to workforce sustainability, reducing burnout in terms of depersonalization and emotional exhaustion, and for overall health and motivation of the workforce in general. in contrast to this, meaningful work could also be a culprit contributing to work burnout because healthcare carries with it many intrinsically meaningful tasks and occupations. for the most part, we know people strive for finding meaning in their work because they often spend more time at the workplace than anywhere else. study objectives the overall goal of the study is to determine the perspectives of meaningful work among physicians, health providers and basic scientists working in an environment that is at risk of high burnout. we wanted to know what makes work meaningful to people, and we wanted them to use their own words. second, we wanted to know what makes work meaningful to academic healthcare employees, so we can focus on how to help facilitate the reduction of burnout and increase well-being in the academic medical center environment. research questions what are the perspectives of meaningful work among employees in an academic health center? what words do health care professionals choose when they discuss meaningful work in an academic healthcare environment that has been found to be highly prevalent for the risk of occupational burnout? materials and methods research design. we used a concurrent embedded design because we embedded a single qualitative prompt in a larger quantitative survey to examine meaningful work from a discourse and meaning perspective.26 in this report, we are only reporting the results of the qualitative question. prompt. our embedded qualitative prompt was, in 10 words or less, describe what makes your work meaningful. the survey designers stopped at 10 words for two reason: i) they felt that the quantitative survey was already too long, and that adding more qualitative questions would encroach on the already valuable time of the respondent population; and ii) they also felt the need to have the respondents keep their comments brief so that they could say the first things that came to mind and not feel like they had time to clarify their responses. respondents mostly adhered to the ten-word prompt, but others responded at length, which generated a large corpus about meaningful work. this was an excellent unintended consequence of the design. given the nature of the question, the number of responses, and the nature of the data (all texts), we determined that linguistic and discourse analytic methodologies were appropriate for extracting meaning from the texts. the large body of responses would lend themselves to corpus linguistic analysis, and the more individual or in vivo codes would lend themselves better to discourse methods. naturally, we discounted case study, phenomenology, narrative and grounded theory approaches because we only used one data-gathering method, we were limited to the 10 words, and did not spend time in the field doing interviews to reach a level of saturation with the data.27,28 institutional review board (irb) approval. the study was approved by the irb using expedited approval procedures because the study was minimal risk, used extensive encryption keys to separate respondent identities from results, and blocked the research team from linking results and keys. respondent characteristics. we targeted data collection from a single academic medical center in the southern region of the united states, focusing primarily on workforce members with direct patient interaction on a daily basis, and secondly from basic scientists. we collected text responses to the prompt from the following groups, at the following rates (table 1). the number of respondents in qualitative research does not necessarily have any bearing on generalizability or statistical significance because that is not the goal of qualitative research. our goal was to capture as much language use as necessary to extract language about meaningful work. in our case, we used all responses to generate patterns and codes. nurses were the largest respondent group, and their discourse dominated the answer to the original prompt, and ultimately the research question. nonetheless, we were able to extract several distinctive [qualitative research in medicine & healthcare 2018; 2:7572] [page 75] article no nco mm er cia l u se on ly patterns in the discourse that distinguished the different groups from one another. to facilitate group level analyses of nurses, physicians, and basic scientists, we combined the nurse respondents together in one group (regardless of credential or education), and combined all physician respondents together as well. preparation of the corpus. the corpus (all the group responses together) was first prepared by eliminating stop words such as a, and the, and isolating words from colons, periods and commas. textual data was further tokenized to extract words to their base unit. we also employed frequency counts and collocations (figure 1). tools used. we used antconc to conduct word counts and help discover words in context using keyword in context analysis or kwic as well as collocations (regularly occurring and similar sentence structures).29 interpretation philosophy through this analysis, we simply interpreted word patterns, clusters, and phrases, and in no way intended generalizability or statistical inference, as this is a qualitative, interpretive analysis. our interpretations were therefore based on simple linguistic analysis by examining specific lexical chains (sequences of related nouns and verbs used by a group). we discovered these chains using the kwic and collocation analysis tools to reveal where respondents used shared language patterns to convey shared meaning, especially in a given setting.30,31 the term frequency, collocation, kwic, and interpretation procedures are all interrelated and interactive, and not linear. the language under investigation is derived from a corpus-driven methodology and is analyzed partly within the framework of thompson’s functional grammar. discourse analyses that employ functional grammar examine how the structure of particular sentences chosen by a speaker reflects how speakers interpret and produce information. in analyses of some participant answers, the authors also draw from the processes/phenomenon framework (table 2). types of coding used we employed pattern coding, which involves commonly used phrases, and in vivo coding, which uses respondent’s own words to convey the meaning.32 both coding approaches were easily employed because the collocation and kwic analysis revealed these patterns almost immediately. because the study group was blinded to respondents and the links to codes, we did not employ member checking to check our interpretations with respondents. results and discussion multiple levels of analysis and interpretations emerged from the data. we borrowed advice from the field of organizational development (od) and limited our analysis to the organizational, group, and individual levels of analysis.5 each discussion includes some orga[page 76] [qualitative research in medicine & healthcare 2018; 2:7572] article table 1. types of groups and number of responses. group responses advanced practice nurses 49 physicians 180 licensed practice nurses 24 registered nurses 534 resident/fellow physicians 40 basic scientists 87 total respondents 914 figure 1. data handling and process. no nco mm er cia l u se on ly nizational level interpretation, which naturally includes an examination of language use among all groups, and even individuals. the analysis then flows down to a focus of each group alone, which almost always includes some examination of individual responses or individual level analysis. in all, organizational, group and individual analyses are included to show contrasts, make comparisons, and differentiate group differences. we began with a word frequency analysis to provide insight into the organization level attitudes about meaningful work. frequency counts revealed high-usage keywords at the organization level such as patients, patient, helping, care, difference, being, and making (table 3). given the frequency of words, and an examination of table 3, we decided to look at word clusters and groupings that occurred at the highest frequencies patients, patient, helping, care, and my. we discovered the following word clusters in high use among our organization of study: i) a difference; ii) able to; iii) making a; iv) my patients; v) helping patients; vi) being able. we can say with some certainty that perceptions of meaningful work held by participants in this study are comprised of wanting to make a difference in the lives of patients using their abilities. though this is not a new discovery, it provides evidence that meaningful work is indeed connected to the betterment of others from an organizational standpoint. also, given that prior research indicated high levels of burnout among the employees in this sample, it illustrates that people in this particular organization have not lost sight of what makes work meaningful. taking each organization perception in turn we examined more closely the themes of making a difference and helping patients. making a difference in people’s lives all groups within the organization used some form of the pattern making a difference. turning to the group level, nurses and physicians alike talked of making a difference in the lives of patients or in people’s lives. as noted in the following sample some respondents used patients and others used people when talking about making a difference: rn: making a difference in people’s wellbeing; physician: making a difference for my patients. apn: making a difference, educating patents. resident: making a difference physically and emotionally with patients. [qualitative research in medicine & healthcare 2018; 2:7572] [page 77] article table 2. interpretive framework.30,31 processes/phenomenon examples mental think, see, hear, know, the senses, believe, the mind material delivering, providing, taking, crushing, doing, etc. situated meanings health, patient, care, science, discovery, etc. social languages interactions with patients, other providers discourse kits common word usage intertextuality borrowed or shared phrases table 3. word frequency analysis (organizational level). word frequency patients 306 patient 152 helping 143 care 131 my 114 difference 84 being 83 making 76 life 64 help 58 able 56 lives 55 people 55 others 54 seeing 51 outcomes 44 make 43 better 42 positive 41 health 37 knowing 36 need 35 good 34 work 30 families 29 no nco mm er cia l u se on ly at the individual level, one basic scientist found meaning in work by making a difference, but said, making a positive impact on research… this particular phrase made us aware of some sharp contrasts between groups as we studied the language use more closely. these differences are highlighted in the group level analysis that follows this section. ability and able the word ability appeared in so many different patterns that we examined these clusters. the patterns that emerged in the use of the word ability or able held some commonalities and differences across all professional groups at the organizational level. at the group level, in response to the prompt, what makes your work meaningful?; one advanced practice nurse (apn) said, the ability to connect with my patients, which decreased the perceived distance between patient and caregiver. physicians, on the other hand, responded such as, the ability to make a difference, the ability to set standards of care, and the unique ability to affect peoples’ lives, which can be broad and open to interpretation as a greater distance between patient and caregiver, that perhaps their training as an expertise in medicine requires their utmost objectivity, and that perhaps there is no room for emotional connections because those emotional connections might interfere with scientific, data-driven evaluation of the patient. in practice among physicians, it is always the patient. it is not my patient. it is rarely my patient presented with x symptoms but more the patient presented with x symptoms. physicians did not express patterns of word usage such as the ability to connect with patients or to connect with my patients. physician use of the word ability seems to be tied to utility of having the knowledge to serve people and make them better. in contrast, registered nurses and licensed practice nurses responded in ways that indicated their ability also came from training, but they tied it to the relationship with the patient in a more substantive way, such as: the ability to make meaningful change, ability to make a difference in their care, and ability to help patients get better. again, nurses tend to exhibit a closer relationship to the patient in language use than other groups, making meaningful work more about the relationship than the process. we are not saying physicians do not care for the relationships with the patient, but as we reveal through this analysis, we became increasingly convinced that education and training has forced them to be more objective than relational. these findings come as no surprise, but we must not lose sight of the original question. ability and process makes work meaningful for physicians, while ability and relationships with patients are what makes meaningful work for nurses. we observed some of this contrast when examining the language of one resident physician who said, the ability to change the trajectory of a family. to us, this is a high impact statement, and it again signals that the actor is providing a material service to help the patient’s long-term sustainability. as we continue, this particular theme emerges among physician discourse throughout this particular corpus. physicians seem to be saying, not just healing for now, but healing for a lifetime. the resident physician’s language aligns with the rest of the physicians in terms of long-term impact on patient care as a material process or a link in a larger chain of events in a patient’s life. on the other hand, nurses and physicians alike seemed to use the being able word cluster along with the word help or some form of the word help as exemplified by the following phrases by nurses: i) being able to help a patient; ii) being able to get done what needs to get done; iii) being able to help patients; iv) being able to help patients have a successful procedure; v) being able to provide patients with the care they need. nurses along with physicians found meaning in their work by being able to help patients. we found it interesting that the phrase being able emerged in such a dominant pattern, but we interpreted this to mean that the academic medical center provides plenty of opportunities for the healthcare workforce to exercise their abilities in a unique and substantive way to impact the lives of others, burnout or not. our respondents seem to consider it a privilege to be able to help people in their time of need, which supports the research on meaningful work that suggests doing good works results in intrinsically meaningful work. at the organizational level analysis we can also see that helping is a big theme especially when it collocates with patient. a closer examination of the word cluster helping patients reveals that helping patients is only part of the story. almost all groups used the grouping helping patients alone or in some context as exemplified by the following sample of phrases: rn: helping patients achieve their goals physician: helping patient and teaching students. resident: helping patients cope or live better. if we were to stop the analysis with just word counts and frequently occurring clusters, each group would be practically the same as far as meaning and interpretation. the word count only tells us when a group of people used the same words to describe the phenomenon. as discussed previously, it is not surprising to find physicians and nurses using the word patient in daily discourse, as it is part of the discourse kit in academic health centers. in order to get at true meaning, it is necessary to look at group level usage in context to examine the use of the word patient and patients and their collocation with other word clusters. at the organization and group levels, we found many commonalities in language use, especially for being able to make a difference in the lives of people or patients, and helping patients. the essence of the group level analysis is that having the ability to make a difference in the lives of patients and helping patients is where they find mean[page 78] [qualitative research in medicine & healthcare 2018; 2:7572] article no nco mm er cia l u se on ly ing in their work. to this end, we found that nurses appear to have closer emotional relationships to patients than other groups. when we examined word cluster my patient using kwic, we found that this interpretation holds mainly for nurses. more group and individual level contrasts using keyword in context nurses focused on patient outcomes when examining the high frequency nouns patient or patients, and applying kwic and collocation analysis, we discovered patterns that indicated some stark differences between nurses and physicians. for instance, we found that nurses were focused on outcomes when it came to patients by using the actual word outcomes without specificity. the patterns seem to suggest that not only do nurses see meaningful work is a process of taking care of patients and seeing positive outcomes in those patients as exemplified by the following sample: i) patient outcomes and the ability to make a difference in their care; ii) improving patient outcomes; iii) seeing the reward of good patient outcomes. nurses used this phraseology or some variation of these phrases frequently enough to augment our interpretation that nurses find meaning in work through the ability to take care of patients with a focus on outcomes. we believe that this indicates that nurses find meaningful work both in the process of healthcare as well as the relationships they have with their patients such that both contribute to patient outcomes. this is a much stronger interpretation than simply: meaningful work is taking care of patients. nurses at this academic medical center are interested in treating the patient while being mindful of positive outcomes driven by sound healthcare decisions. the patterns seem to suggest that nurses use the phrase being able from their years of education and training, and the desire to see positive outcomes is also a function of education, training focused on science and data. the interpretation implies that because nurses have the training, they are able to deliver this service and care to others. evidence-based medicine is the emphasis for nurses, physicians and anyone taking care of patients. the interpretation would be much less satisfying if we were simply to conclude that nurses like to take care of people. applying some transitivity analysis to this interpretation,30 we find that the phrase indeed represents a material process wherein we have an actor providing a service to a recipient with the hope that an outcome might be achieved. among nurses, however, it is so much more than that. we would like to interpret this to mean, nurses like to take good care of people, patients, and families by using a scientific approach and sound reasoning. we were surprised to find that physicians rarely used this word cluster because their discourse seemed to emphasize the material processes over that of the discourse of nurses. though the outcomes word cluster is less prevalent in the discourse among physicians, we found that physicians express outcomes in different ways, so we examined this more extensively in the next few sections. differences in word usages and word patterns emerged to find several variations in the overall interpretation of what makes your work meaningful. nurses focused on my patient to better examine the interpretation that nurses demonstrate a closer relationship to the patient we looked at the word cluster my patient which was used by nurses more than any other group. nurses talked about their patients in very personal terms: i) the ability to connect with my patients by taking time to listen…; ii) seeing a difference in the lives of my patients; iii) being able to make a difference for my patients; iv) bringing joy to my patients; v) being and advocate for my patients; vi) seeing good outcomes for my patients. the above sample is an excellent representation of all the responses in the corpus when looking at the my patient cluster. when examined in context, we believe nurses find meaning in their work when they can be a part of the entire process and see positive outcomes, but they couch these expressions in terms of my patient which supports our interpretation that they hold a strong emotional connection to the patient, too. using the possessive my patients also decreases the distance between caregiver and patient. within this kwic analysis there were also several respondents, who talked about connecting with patients, which supports the interpretation that the concept of meaningful work is constructed by a combination of performing a material process plus using specialized training, specifically augmented by personalization. physicians focused on patients continuing our group analysis, and using the term patient as a commonality in language use, we turn to physicians and their use of the terms patient, people and person to better understand their relationships with their client and a core reason for their occupation. physicians most often use the term patient instead of person or people when discussing those in their care, which supports our interpretation that they exhibit lesser emotional connections to patients to respect their objective view of the subject of healthcare. physicians, however, did not use the term my patient as dominantly as much as nurses did. in fact, only one or two physician respondents used my patient. in order to examine meaningful work in patients from the physician’s point of view, we ran kwic analysis on the term patient and encountered some interesting patterns at the group-level (supplementary table a1). i)… making a difference to patients…; ii) optimize patient care; iii) improving patient’s lives; iv) having an impact on patient care; v) giving back to patients; vi) research [qualitative research in medicine & healthcare 2018; 2:7572] [page 79] article no nco mm er cia l u se on ly that affects patient care; viii) improving the life of my patients. analyzing the term patient led us to different conclusions about how physicians view patients. the commonality here is the use of some form of the word to improve, help, impact, and give to patients though these phrases indicate a positive pattern of physician interactions with patients, we could not ignore the fact the patterns in language use among physicians favored the material processing of patients rather than an emotional connection to patients when compared to nurses. because they used words like optimize, impact, and research that affects patients, the interpretation emerges as more material than emotional. we also did not ignore the fact that some physicians did exhibit some emotional connection by using my patient, but again, usage was rare. because making a difference was so prominent in language use among physicians at the organizational level, we examined these patterns still further. making a difference though physicians did not use the phrase my patient as often to consider it common usage among this group, we might be led to interpret this to mean physicians have a less connected or personal relationship with their patients than nurses do. we did not want to stop there. further examination of the discourse, however, revealed that physicians use the cluster making a difference differently when it comes to patients’ lives, which is an interesting point of discussion as revealed in their own voices (supplementary table a2). i) i make a substantial difference; ii) making a difference to patients; iii) making a difference in the lives of patients and students; iv) making a difference that gets them back to work/family; v) making a positive difference in people’s lives; vi) the difference i make with patients; vii) when i make a difference in a patient’s life. there are several ways to interpret these patterns of making a difference. for instance, the one statement from above that stands out from the rest of the sample is the phrase making a difference that gets them back to work/family. the impact of this statement compared to the others is that it is outcome driven, not just to heal the patient and process them, rather to be present in the process is to heal the patient, which would allow the patient to return to life and sustain the survival of themselves and their families. physicians did not use the term outcomes like nurses per se to describe outcomes but spoke more globally in terms of outcomes. supporting this statement is the fact that, physicians understand their vital role, linking their training and their knowledge, to make a difference in the lives of patients, and that they are the vital link in the patient care process. the patient care process is actually more than just taking care of patients, but healing them such that they can continue to function and have a greater quality of life (the global outcome). it might also be interpreted as physicians showing some emotional distance from the patient more so than nurses when it comes to patient care because they are not saying, make a difference in my patients’ lives rather they are saying in people’s lives or in a patient’s life or to patients. it could also mean they are the reason for the difference when you consider the phrase, the difference i make with patients. instead, we chose to interpret this at face value. the question was, describe what makes your work meaningful, and based on other results across the board, this language use is simply different for this profession (medicine) than the other professions (nursing). helping others we looked at the term helping in context with patients because physicians used the term enough to exhibit some interesting patterns across the sample (supplementary table a3). in their own words, physicians find meaning in: i) satisfaction of helping others; ii) patient interaction, helping others; iii) providing good care to patients and helping them understand their illness; iv) realize i’m helping people reach their goals; v) caring and helping others and families in times of need; vi) helping sick patients. these patterns suggest that the distance between the physician and the patient is smaller than we originally noted, but still represents a material act of patient care. we must not look past the fact that this group finds meaning in their work through helping patients, making a difference in patients’ lives, and having an impact on the patient care endeavor. whether one owns the relationship by saying my patient or speaking about helping others, we feel that the strength is the same when it comes to describing meaningful work in general, and that is most of the professions in academic medical centers find meaning in work when they are able to make an impact to improve the health and well-being of patients. basic scientists science makes my work intrinsically meaningful basic scientists did not use the term patients in any interesting patterns enough to warrant extensive analysis. though the term patient was not in wide use among this group, when they did use the term, they described a benefit that has not yet emerged. scientists used the word patient in phrases like, improving patients’ survival, and… contributing to health of patients through research, which, upon further analysis, aligns with interpretation of the first phrase. using these patterns of language use we can begin to develop an overall theme among this group of respondents. for instance, through an examination of the frequency of the term my, a personal possessive pronoun, we find a deep connection between the basic scientist and [page 80] [qualitative research in medicine & healthcare 2018; 2:7572] article no nco mm er cia l u se on ly his/her work and training for a special purpose in life. supplementary table a4 supports this interpretation through several distinct statements. basic scientists find meaning in their work through: i)…perceiving that my effort leads to something making discovery…; ii) …applicability of my work as hospitals…; iii) learn something new everyday with my research… basic scientists in this sample are very confident that their specialized training can lead to special contributions to society, and in this case, a special place in the discovery of new diagnoses, treatments, medications or cures. one might say that basic scientists are not focused on health, but rather disease processes and the science of diseases rather than healthcare for now. to test this notion, we examined word clusters around the term health. this group connects their meaningful work to health using phrases such as: i) [i] can achieve real impact on child health; ii)…ideas with potential to change human health; iii) contributing to health of patients through research; iv) knowledge and info relevant to health [sic] new findings; v) helping the advance [of] health through research. the discourse analysis on the term health supports the interpretation using the term my above. basic scientists show confidence in their profession’s ability to use their specialized knowledge to combat disease, and in some cases, they work to battle health disparities. the phrase that stands out among all the phrases is, ideas with potential to change human health because it speaks of material actions taken long before they reach the bedside, and to material actions that could have historical impact on the human race (human health). like their physician counterparts, the distance between the patient and the person providing the service is far greater than it is between nurses and patients. though this is not surprising, the distance between scientist and patient is always greater because of the lack of interaction with patients per se. from above, scientists see themselves as contributing to the health of patients through new findings, research, and knowledge, all of which in most cases has yet to make it to patients in the short term. scientists find meaning in impacting health from a distance, and having the ability to provide new solutions to health of the patient in ways that are likely far more advanced than what we have now. despite these apparent emotional distances between basic scientists and patients, they still find intrinsic meaning in their work through practicing their expertise on a daily basis. it seems they are signaling that the long years of training resulted in a meaningful career whether or not they can see the immediate results of their work, unlike physicians and nurses who can see the more immediate results of their meaningful work. the striking difference between basic scientists and those with direct patient responsibility, therefore, appears to be that meaningful work comes through the process itself rather than some sense of immediate meaning. meaning to them is more diachronic than synchronic. disjuncture: knowing that i… a set of data that seems to show some departure between nurse and physician discourse is the set of word clusters that include the word knowing. for instance, nurses used the word cluster knowing that or knowing that i almost exclusively in terms of knowing that i made a difference; i) knowing that i saved someone; ii) knowing that i impacted a patient’s life; iii) knowing that i was helpful; iv) knowing that i give life to patients daily. physicians did not use the words knowing that i together or even the term knowing by itself in this context in any of the text data analyzed. the word knowing was solely a part of the word bank used by nurses. nurses further find meaning in work knowing that they have made a difference in the lives of patients, which is language use that is indicative of a mental process about how these participants see their world. nurses find a connection with their patients, and their jobs bring them meaning and satisfaction knowing that they have impacted a patient’s life. we are not sure why physicians did not use the knowing that i language, but some of us have offered several interpretations. first, knowing that i’ve done a good job could also be interpreted as, someone has to tell me i’ve done a good job to know it or it could be an indicator of humility, or it could be an indicator of the lack of confidence. second, if we went with these choices, we have to speculate that perhaps the long-term training period physicians must sustain, deletes the knowing that i discourse over time because physicians are trained that they must know and that there is no room for mistakes or there is no room for portraying a lack of confidence. third, keeping our interpretation positive, we find this is not a very satisfying interpretation because then you have to commit to saying nurses are not as confident, or nurses don’t know they’ve done a good job or are too humble. finally, the most compelling reason is the difference in the years of training, the levels of decision-making about patients, and the hierarchy. to double check the interpretation that education, training, decisions, and hierarchy might have had something to do with this use of terms, we examined all levels of nursing training and found that only one nurse, who identified as apn, used the phrase knowing that i in this context. the rest were rns. we also examined basic scientists who would have similarly equivalent years of training as physicians, and found only one person used the phrase this way: knowing that i am the expert…this phrase is telling because this basic scientist is not saying knowing that i have done a good job, they are saying knowing that i am the expert which in some ways could be interpreted as elitist and without a check or a balance. true, basic scientists are the experts in their work as are physicians, and maybe that level of education, responsibility, and autonomy lends itself to knowing that they are experts instead of knowing that they have done a good job. we could say that being an expert is the same thing as knowing they have done a [qualitative research in medicine & healthcare 2018; 2:7572] [page 81] article no nco mm er cia l u se on ly good job or that it carries the same weight whether it is expressed or not. there could be some validity to the interpretation that education levels and hierarchy have something to do with these patterns. keeping the interpretations positive we concluded that nurses use the phrase knowing that i more likely because of the perspective that they are an important part of the whole treatment picture, have a lower hierarchical position compared to their physician counter-parts, their different educational experiences, and the fact that nurses can tell they have done a good job because of the obvious close relationship to the patient who might offer a thank you, and later an empty hospital bed. conclusions we can say with confidence that, the health care employees in this organization speak of meaning in work in terms of making a difference in the lives of patients, improving health, either directly through patient care or indirectly through research and discovery, along with having an intrinsic sense of a job well done for helping the lives of patients. this theme is shared across the corpus, regardless of specialty or profession, and probably the most reliable organization level interpretation at this point. we find the most differences, however, at the group level of analysis. for instance, nurses seem to talk about meaning in terms of knowing that they have done a good job or knowing that they have cared for patients, but they also speak of their job as a material process of delivering care that has a measurable, satisfying outcome of a job well-done. nurses more than any other group seem to connect their knowledge and skills to outcomes, but all of this would be for naught without the relationship to the patient. meaning in work for nurses is constructed by a continuum of ability, skills, measurable outcomes and relationships. the finding echoes baldacchino and haland and osmundsen who noted that nurses see themselves as catalysts and as those providing a caring presence. 23,24 these archetypes support this emotional connection that is so prominent in their language about meaningful work. in addition, the connectedness and the knowing that i word clusters are supported by the van iersel et al.22 article in which nurses describe job dimensions important to them such as connectedness and recognition.22 indeed, the knowing that i concept is likely heavily linked to recognition. some inferences could be made that physicians see the patient perhaps as a 3-dimensional system (just one interpretation). and though physicians did not use language that emphasizes a strong emotional connection to patients like nurses did, this does not mean that physicians believe they have not done a good job, nor that they do not care about patients. it simply means that their language favors a more material transaction over knowing or caring when it comes to a job well done or caring for patients. also, perhaps knowing that they have the expertise to experience outcomes or feel that they contributed in a substantive way to positive outcomes is the same as knowing that they have done a good job. the proof is in the patient. overall, people in the healthcare workforce find meaning in work in several ways. some are there to make a difference in the lives of others, and even though they do not see the difference every day, they persist until they can see that they have made a difference, or they persist because the process itself is meaningful, all with outcomes that are yet to be realized when it comes to the patient. it could be said that basic scientists experience meaning diachronically perhaps rather than synchronically because outcomes are at a distance and take time, but still they find meaning in the work along the way. they can see that they have opportunities and abilities to make a difference in the lives of patients whether they share a relationship with them or not. this could finally explain why nurses use the phrase knowing that i have made a difference in the lives of patients makes work meaningful, which is evidence of a mental or cognitive connection to meaningful work through the use of the term knowing. more specifically, nurses seemed to express meaningful work in terms of close connections with patients, while being closely focused on ability to care and outcomes, and knowing that they’ve done a good job. physicians were patient focused, and they expressed meaningful work in terms of making a difference and performing the act of patient care. basic scientists expressed meaningful work in terms of their training and abilities to use science for the betterment of others which adds some validity to from van iersel et al.22 assertions that an environment of continuous learning also contributes to meaningful work,22 or steger et al.7 and martela and pessi,8 who found one does not have to necessarily provide direct help an individual to experience meaningful work. overall, the construct of meaningful work in this environment maintains its value in the face of burnout, especially when the healthcare workforce can use their hard-earned knowledge to make a difference in the lives of people, when they can actually see the results of their work, or when they know that their work will contribute in innovative ways in the long term. meaningful work is therefore more than just taking care of patients. meaningful work in medicine and healthcare must be a combination of some or all of the following factors (no hierarchy intended): i) confidence in one’s hard earned education and skills; ii) a short and/or long term focus on positive patient outcomes; iii) connecting with patients; iv) recognition. still, meaningful work maintains its value regardless of the group or actor or burnout, and all are positive, shared results. our research team believes it would be interesting to stratify the respondents by high burnout scores and low burnout scores and compare responses to gain insight into whether the discourse and the perceptions of meaningful work are different. further, it might be inter[page 82] [qualitative research in medicine & healthcare 2018; 2:7572] article no nco mm er cia l u se on ly esting to see if healthcare workforce members who score high on burnout use different terms for the term patient, or the term ability, or the phrase my patient. references 1. maslach c, jackson se. the maslach burnout inventory. palo alto, ca: consulting psychology press; 1986. 2. maslach c, leiter mp. early predictors of job burnout and engagement. j appl psychol 2008;93:498-512. 3. shanafelt t, boone s, tan l, et al. burnout and satisfaction with work-life balance among us physicians relative to the general us population. arch intern med 2012;172:1377-85. 4. brazeau cm, shanafelt t, durning s, et al. distress among matriculating medical students relative to the general population. acad med 2014;89:1520-5. 5. anderson dl. organizational development: the process of leading 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[qualitative research in medicine & healthcare 2018; 2:7572] [page 83] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2021; 5:9647] [page 45] introduction and aim of the study breast and ovarian cancer belong to the most common types of cancer among women worldwide. five to ten percent of all breast and ovarian cancer patients develop the disease due to genetic predisposition. in 30 out of 100 cases of patients with breast or ovarian cancer in germany, a familial accumulation or an early onset of the disease can be observed.1 predictive genetic testing became a widespread instrument of determining individuals’ hereditary susceptibility for familial breast-ovarian cancer (fboc), and the increasing research in this field allows for more differentiated and individualised knowledge of various genetic and non-genetic risk factors.2 the ticking time-bomb. health literacy in the context of genetic risk prediction in familial breast-ovarian cancer; a qualitative study mariya lorke,1 laura harzheim,1 kerstin rhiem,2 christiane woopen,1,3 saskia jünger1,4 1cologne center for ethics, rights, economics, and social sciences of health (ceres), university of cologne and university hospital of cologne, cologne; 2center for hereditary breast and ovarian cancer, university hospital cologne, cologne; 3research unit ethics, institute for the history of medicine and medical ethics, faculty of medicine, university of cologne and university hospital of cologne, cologne; 4department of community health, university of applied health sciences bochum, bochum, germany abstract personalised methods of predicting breast and ovarian cancer risk through genetic testing increasingly demand a person’s understanding and critical appraisal of risk-related information, as well as decision-making and acting upon disclosure of a positive test result. the current study aims at understanding health literacy (hl) among persons at risk of developing familial breast-ovarian cancer (fboc) from a bottom-up perspective—incorporating their viewpoints into the research process. its qualitative design integrates an ethnographic-narrative approach and findings from 10 narrative interviews with women who have undergone genetic testing, analysed by using reflexive grounded theory. the collected data reveal the entanglement of the women’s perceptions concerning the risk of getting ill, their identity, and their strategies of managing health. the analysis of this interplay provides an empirical basis for approaching hl in its communicative dimension, considering individuals’ understandings of health and illness, and emphasizing the role of critical hl. correspondence: mariya lorke, cologne center for ethics, rights, economics, and social sciences of health (ceres), university of cologne, albertus-magnus-platz, 50931 cologne, germany. tel.: +49.0221.470.89126; fax: +49 (0)221 470-89101. e-mail: mariya.lorke@uni-koeln.de key words: health literacy; risk; narrative interviews; reflexive grounded theory. acknowledgements: we are obliged to our participants for their time and interest in this study and very thankful for their openness in the research process. this project was conducted at the cologne center for ethics, rights, economics, and social sciences of health (ceres) under the leadership of principal investigator christiane woopen. furthermore, we are grateful to rita schmutzler for her valuable input in the process of defining the inclusion and exclusion criteria and julia dick and leonie born for making an extremely effective recruiting process possible. contributions: ml made a substantial contribution to the conception and design of the study, the analysis and the interpretation of data for the work, and the theoretical embedding of the findings; the author also drafted the article. lh made a substantial contribution to the conception, design, and conduct of the study, and revised the work critically for important intellectual content. kr made a substantial contribution to the conception and design of the work and the recruiting process; the author also revised the work critically for important medical and intellectual content. cw made a substantial contribution to the conception and design of the work and revised the work critically for important intellectual content. sj made a substantial contribution to the conception, design, and conduct of the study, supervised the research process, and revised the work critically for important intellectual content. all authors gave approval on the final version of the manuscript and agree to be accountable for all aspects of the work. conflict of interest: the authors declare that there is no conflict of interest. funding: this research was funded by the robert bosch foundation (grant number 11.5.a402.0002.0). availability of data and materials: all data generated or analyzed for the purposes of this article are included in this publication. ethics approval and consent to participate: ethics approval was obtained in march 2018, (registration number 18-014) by the ethics committee of the medical faculty of the university of cologne. the study is conformed with the helsinki declaration of 1964, as revised in 2013, concerning human and animal rights. all patients participating in this study signed a written informed consent form for participating in this study. informed consent: informed consent is covered by the section on data protection regulations included in the ethics approval. received for publication: 28 january 2021. accepted for publication: 30 may 2021. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2021 licensee pagepress, italy qualitative research in medicine & healthcare 2021; 5:9647 doi:10.4081/qrmh.2021.9647 qualitative research in medicine & healthcare 2021; volume 5:9647 no nco mm er cia l u se on ly the german consortium of familial breast and ovarian cancer (gc-hboc), for example, established a multigene panel (trurisk®) for the analysis of risk genes, which currently comprises the core genes atm, bard 1, brca1, brca2, cdh1, chek2, brip1, palb2, rad51c, rad51dand tp53, as well as other genes still being object of current research that needs further validation. apart from specific biographical reasons and motivations that may be crucial for each individual case, most women decide to undergo a genetic test after having developed breast or ovarian cancer due to familial predisposition (based on individual assessment or gynaecologist recommendation) or positive test results of relatives. the increasing opportunities of risk prediction confront individuals with the challenge to find and understand relevant information and to critically appraise it, in order to make a decision concerning genetic testing and preventive interventions. we know a lot about the psychological effects of genetic testing on individuals’ identityaand everyday life,4,5 the experiences of affected individuals and their families,6,7 individuals’ risk perceptionsb in the process of decision-making in terms of prevention,11 and the issue of genetic responsibility.12 but what do we know about health literacy (hl) among persons at risk of developing fboc, and what impact does the perception of risk have on individuals’ understanding of health and illness and/or vice versa? most generally speaking, hl refers to knowledge and skills related to one’s health; depending on the respective definition or perspective, this can imply different cognitive, interpersonal, and social skills, and entail a more functional connotation (in terms of basic reading, writing, and literacy skills), a communicative level, and a critical dimension (in terms of appraisal of information or even a social and political engagement concerning health-related issues).13–15 the number of publications under the heading of hl has risen rapidly in recent years, and efforts continue to define the concept, to expand existing definitions, or to examine them in new contexts.16 in the phase of conceptualising this study, we employed a working definition of hl based on the existing literature and the integrated model of hl, defining it as a person’s set of certain abilities, attitudes and lifestyle, enabling her or him to manage a certain health situation in order to achieve a positive health outcome.10 a great number of studies deal with the measurement and quantification of hl as a multidimensional concept. the majority of them primarily refer to functional hl using standardised measurement tools and mixed measurement (self-reporting components and direct testing of certain abilities).17,18a few very fruitful qualitative studies deserve closer attention19–21 that analyse hl beyond its functional dimension, using data from interviews and thereby emphasizing the perspective of those being studied. however, qualitative research on hl to date is still scarce, particularly in the specific clinical field of risk of fboc.22,23 at this point in time, we still know very little about people’s own perceptions of hl in the context of fboc and of factors relevant for the management of health-related information and behaviour. an insight into the process of decision-making, attitude towards risk, and the individual coping strategies before, during and after the genetic testing can provide a productive ground for a better understanding of hl in the context of risk. the current study aims at generating new hypotheses in the research field of hl and risk based on findings from a bottom-up research approach. the leading questions in this article are: i) which factors account for hl among persons at risk of developing fboc? ii) how can the empirical findings contribute to the theoretical foundation and conceptualisation of hl? methods and research ethics this study is part of a broader research project on hl (health literacy of persons at risk – from information to action – riskomp) in persons at risk in four different clinical fields (fboc, coronary heart disease, psychosis, and alzheimer’s dementia) and uses a qualitative design integrating an ethnographic-narrative approach. this article is based on findings from 10 narrative,24 open-structured interviews with women who have undergone genetic testing for fboc. ethics approval was obtained in march 2018, (registration number 18-014) by the ethics committee of the medical faculty of the university of cologne. procedure and participants the interviewees were recruited at the centre for fboc at the university hospital of cologne (germany) [page 46] [qualitative research in medicine & healthcare 2021; 5:9647] article a we define identity here as social identity,3 illuminating the human world as selfhood which depends on both an individual’s physical body and his/her social world. according to jenkins, identity is not only about individual values and understandings, but also about interactions through which status, social position, roles and expectations become visible. furthermore, jenkins refers to identity as a process rather than a static constant.. b in line with the work of other authors,8–10 risk in the context of our study is experienced and handled in an area of tension between objective and subjective.9 from a medical/statistical perspective, risk is the probability for a certain person to develop fboc, based on the outcomes of genetic testing. from a socio-anthropological point of view, risk can be considered as a relational phenomenon that is situated in specific social and cultural contexts. as a way to unravel these “juxtapositions and amalgamations” of perspectives, boholm proposes considering risk “as a cognitive frame that produces contexts which link an object of risk (a source of potential harm), an object at risk (a potential target of harm) and an evaluation (implicit or explicit) of human consequences;" situated in specific social contexts risk can be thought of as a relational order through which connections between people, ‘things’ and ‘outcomes’ are constituted.”9 this understanding of risk also encompasses the varying perspectives of different actors on the same external phenomena;10 and it is within this cognitive frame that persons confronted with the statistical probability of getting fboc are required to make their evaluations and to negotiate their individual risk perceptions. no nco mm er cia l u se on ly in cooperation with a team of experts in the field of fboc and genetic testing according to the criteria shown in table 1. the team of physicians closely involved in the clinical everyday practice and procedures started screening patients’ data for eligibility and obtained the patients’ agreement to be contacted by the research team. only individuals who underwent genetic testing were contacted; those who did not, were not included in this study. the researchers arranged the meetings and conducted the interviews. all participants were provided with detailed information on the aims of the study and the research procedure and signed an informed consent for participation. in a time period of five months, all 10 interviews were conducted and preliminarily analysed; in the next six months, all interviews were transcribed and went through an in-depth analysis process. narrative interview the interviews started with an opening question avoiding a direct reference to feeling about risk and rather focusing on the concrete situation in which the first confrontation with the notion of genetic risk happened. further in-depth questions were pre-formulated based on existing empirical research and were used only if the topic was raised by the interviewee. an additional tool was developed to ensure a constant process of researchers’ selfreflection, researcher triangulation, and making researcher’s subjectivity visible. the average length of the interviews was approximately one hour. all interviews were conducted in german. for the purpose of this article, the quotations from the interviews used in the analysis part were translated from german into english by the involved researchers including the one who conducted the interview. the different versions of the translation were compared, discussed, and in case of disagreement, a fourth person (also a member of the team but not involved in the research process) was asked for her/his opinion. socio-demographic data were collected by means of a questionnaire before starting the interview. analysis strategy the process of data analysis was embedded in the reflexive grounded theory,25 a variation of the grounded theory methodology emphasizing the interaction between the researcher and the research topic/partners/or field as an integral part of the process of knowledge production and considering reflection on this interaction as a source of insight. it combines the grounded theory approach with reflexivity concerning the situatedness of the researchers, the research design, as well as the research process and practices. reflexive grounded theory therefore allows for the integration of the researchers’ subjectivity, personal dispositions, or standpoints into the analysis, as well as for the reflection on power relations in the research context. the data analysis in the current article is based on two data pools – the interviews and the researchers’ self-reflection—with the aim of ensuring a comprehensive analytical process encompassing reflexivity, theoretical sensitivity, and triangulation of data and researchers. all researchers and participants in this study were female. the researchers’ own understanding of risk grounds in their different academic backgrounds (psychology, health sciences and social anthropology) and in their personal experiences with risk and disease. the three researchers had also been confronted with the risk of getting fboc to different extents in different phases of their lives and made different decisions on prediction and prevention. these experiences and attitudes have undoubtedly impacted the research process; in line with the principles of the reflexive grounded theory, they were actively addressed throughout all stages of data collection and analysis. in the first stage of the empirical research, data were analysed parallel to the process of conducting the interviews. our team arranged researcher meetings on a regular basis and created opportunities to discuss and compare the first impressions and categories that resulted from the first steps of individual open coding. inductive thematic saturation was reached at the sixth interview.26 in the second stage of the analytical process, the memos were systematically analysed, and the findings were incorporated into the process of axial coding. in the third stage of the analysis, the two data sources were integrated into a process of selective coding and theory generation. participant characteristics the analysis includes responses of ten women: two women aged between 18 and 30 (julia, incapacitated for work and kathrin, working part-time in the health area); four women aged between 31 and 40 (christina, working part-time in the social area, jennifer, working fulltime in [qualitative research in medicine & healthcare 2021; 5:9647] [page 47] article table 1. inclusion and exclusion criteria. inclusion exclusion participation in genetic counselling taken place persons younger than 18 years of age group 1: carrier of a brca1 or brca2 mutation mild cognitive impairment or dementia group 2: carrier of a mutation in a moderate risk gene (e.g. chek2) current clinically relevant depressive episodes, anxiety group 3: no mutation detected in one of the known risk genes, but increased symptoms or suicidal tendencies statistical risk of disease due to own and/or family anamnesis written declaration of consent of the patient german language proficiency that allows for participation in an interview/survey no nco mm er cia l u se on ly the health area, stefanie, working part-time in the field of economics, and nadine, working in the health area); three women aged between 41 and 50 (katharina, working full-time in the social area, sarah, working fulltime in the it area and anna, working full-time), and one woman aged between 51 and 60 (sabrina, working parttime in the health area). six of the participants were married, three unmarried, and one divorced. most participants lived with their families or partners, apart from one who lived alone. seven participants had a german background and three, a non-german cultural background. all participants had secondary to post-secondary educational background. four participants suffered from a chronic disease, e.g. thyroid gland diseases. all names used in text are pseudonyms. category system and main findings the main themes and issues that arose in the course of this study can be situated in the context of understanding risk, identity (being a person at risk of developing fboc), and managing health. these spheres also build the central categories of analysis, contributing to a better understanding of hl in persons at risk of developing fboc. understanding the genetic risk of getting ill as a feeling, a multifaceted concept, and an individual/relational responsibility the process of understanding health risk in its different dimensions includes the individual’s feeling about risk, its familial dimension, and possible strategies to manage and control the process of risk understanding. this negotiation also entails questions about the credibility of risk when related to everyday life experiences. risk as a feeling: between reason and emotions the results of this study indicate a tension between different interpretational frameworks concerning one’s genetic risk: a logical framework, analysing risk based on statistics and medical facts; and an intuitive one, viewing risk on a more affective level through one’s own experiences.8 with respect to the appraisal of a genetic risk of fboc, this complex interplay between both frameworks is mirrored in our interviewees’ accounts.8 on the one hand, the demand for genetic testing as a means to objectify risk and as a basis for further decision-making on prevention suggests that in medical settings, reason (representing the analytical system) is the dominant mindset among both professionals and patients. on the other hand, our interviewees’ narratives demonstrate the importance of emotions (representing the experiential system) in the process of interpreting and evaluating risk on an individual level. the decision for genetic testing was described with an emphasis on the role of one’s own risk-intuition, and at the same time as a possibility to technicise risk and thereby attain a sense of safety. sabrina responded to the question of how she was confronted with the risk of getting fboc for first time saying: i somehow knew that i have a high risk, and then i complained to my gynaecologist, and i said to her: i think that i’m quite at high risk, i want to do the test, and then i also wish to act accordingly. and then they said: you do not need to do the test, your cousin is not affected, the youngest and most severely affected family member. we have examined her tissue, and there is no gene. (palp2, breast cancer) the interviewed women reflect on their endeavour of relating the medical information about the statistical risk probability to their personal feelings towards the risk (in terms of a premonition or an intuitive interpretation of the statistics they have been provided with). when being asked how she values the communicated risk percentages, jennifer explains this as follows: i myself for example, from a purely medical point of view, i understand that they say that you only consider it a medium risk if it is increased up to 40 percent. but for me personally, it felt like close to 50 percent and the chance is actually fifty-fifty whether you will get it or not. (chek2, breast cancer) this quotation illustrates the process of relating medical information to one’s own feelings. our interviewees’ reflections suggest that the two sources of information (numbers and feelings) are not merely considered a problem of contradiction, but also as a resource for decision-making. this shows that understanding the quantity of risk correctly in mathematical terms and feeling about its quality may be seen as complementary rather than contradictory. risk as a multifaceted concept the depiction of risk in an area between the emotional and the rational is also related to one further perspective of understanding risk and decision-making, namely experiencing risk in manifold facets. these were described with respect to i) illness-logic, i.e. the observation that whether or not someone will be struck by a disease is not always logical in terms of risk factors; ii) inevitability, i.e. the awareness that one cannot influence the fact of having or not having inherited the gene; and iii) a call to action, i.e. the responsibility that one may be able to influence whether or not the gene will eventually result in developing the disease. all our interviewees provided many examples for the paradox of risk in terms of the illness-logic in order to substantiate their decision to listen to their individual feeling. for example, julia refers to this paradox while responding to the question of how she became aware of the risk saying: [page 48] [qualitative research in medicine & healthcare 2021; 5:9647] article no nco mm er cia l u se on ly well, i knew it before. that sounds stupid, but my grandfather died of cancer, but he was the healthiest man ever—he never smoked and stuff, or drank. (brca2, breast cancer) the interviewed women also discuss the pathogenesis of fboc emphasizing its paradoxical nature between determinism and modifiability: sabrina sees it as a genetic bug and one’s own genes as an uncontrollable danger, and julia as variable, modifiable by stress and way of life: well, you feel as if you were carrying a time bomb with you. (sabrina, palp2, breast cancer) but i just think, somehow, considering how fastmoving society is, and the pressure you feel in working life and so on, people just get sick…. (julia, brca2, breast cancer) individual and relational responsibility the feeling of risk in the context of fboc is a topic which also implies a further relational/familial dimension. the possibility for genetic testing is seen as emanation of the individual’s autonomy, on the one hand, and on the other hand, it raises the topic of the distressing effect on the tested person and her/his family and relatives if the result is positive. asked about her experience with genetic testing, sabrina said: and there is a constant back and forth, right? that you say: i do not want to know it, it is driving me crazy. you almost feel like it’s a self-fulfilling prophecy. (palp2, breast cancer) in this quotation, the notion of responsibility and self-fulfilling prophecy also becomes visible. women reason on the relation between being overconcerned with risk and the illness outbreak, wondering if they themselves could somehow influence its emergence. responsibility is not only a question concerned with the individual and her impact on the disease emergence, but also with her as a part of the familial system. christina provides an example for this familial dimension when asked about how her family deals with the results from genetic testing: my mother even apologised to me for transmitting the gene to me. but that is not at all her fault. (brca2, no cancer) in this case, the genetic risk goes beyond the individual responsibility (in terms of behaving in a way to minimise it) and reveals a further collective dimension. christina’s genetic risk is immediately intertwined with her mother’s risk and raises the question of fault, responsibility, and the distribution of blame. strategies to manage risk the different biographic backgrounds influence the strategies the interviewees employ in order to manage the thought about possible sickness in the future or acute onset of a disease in the present. factors that influence the perception of illness are: i) vicarious experience as in the case of sabrina, ii) the perception of illness as a normal and universal part of human life as described by julia, and iii) medically related work experience in the case of jennifer: so, and this horror scenario was something i had then, in the same way, like the images of my mother who died so terribly and then i thought: i have to do it in an extreme fashion [the prevention]. (sabrina, palp2, breast cancer) and if you look into families, there is hardly any family, i would say, without any diseases, or strokes of fate [...] i see diseases as everyday risk.” (julia, brca 2, breast cancer) so… and we’ve had such a chief physician whom i have to think about all the time. i am actually working in surgery. and he always used to say, he always was in favour of resecting generously. (jennifer, chek2, breast cancer) to sum up, the concept of risk as a feeling in the area of tension between emotions and reason is seen as an important aspect in the processes of perceiving risk and decision-making. describing risk as a multifaceted concept giving examples based on personal, everyday experience performs an argumentative function in explaining one’s own attitude and serves as evidence that medicine/statistics/science are not universal. the question of responsibility is seen in both an individual (doing something that could trigger the disease) and a social (genetic responsibility) dimension. identity between quality of life, social environment, everyday life, and stress this category illustrates the role of personality in the process of dealing with risk and, at the same time, the impact of risk on one’s identity3 and life-world.27 women describe their quality of life in a close relation to their personality, social environment, everyday life, and their individual ability to regulate and control stress. quality of life in terms of quality of life, it became clear that the personality determines the individual, subjective definition of the concept. katharina responds to the question of how she manages her risk saying: well, i’m not in the mood for side-effects [of the preventive medication], if that’s what’s affecting [qualitative research in medicine & healthcare 2021; 5:9647] [page 49] article no nco mm er cia l u se on ly the quality of life. i want to live as well as i can. i want to do sports, make music, work [...]. (atm, breast cancer) when asked about their understanding of health, anna and jennifer responded referring to the term “quality of life.” on the one hand quality of life is seen as condition that should be actively maintained in doing something spontaneously and actively enjoying life as in the case of jennifer; on the other hand, it is defined by keeping up with normal life and feeling able to live in the normal way as explained by anna: i need to take better care of myself and that i also just do such spontaneous things just more often, you know? that i just say: nope. i have the weekend off and my husband is on duty, so i’m just going to holland to the seaside, just like that, you know? (jennifer, chek2, breast cancer) that is, being healthy for me means being able to lead a normal life. that includes work, it includes friendship, it includes family, it includes my partner, it includes sports. being able to join cultural things, you know? so that i can do all of this. i can lead a completely normal life. and for me in a way that just means being healthy. (anna, chek2, breast cancer) in anna’s words, normality relates to the life before knowing about the risk or having cancer, and quality of life means to maintain this condition, not allowing risk and illness to take up too much space and thereby endangering the normal life. in the case of jennifer, the risk and the illness can be seen as a ground for actively increasing the subjective quality of life through enriching the normal life by spontaneous actions and experiences. social environment and everyday life the concerns related to the concept of quality of life are connected with the feeling of anticipated loss of everyday-life normality, especially in the context of life planning and decision-making with respect to one’s own self or in the impact on relatives and family members, as in the case of jennifer. asked how knowing about the risk change her life, she responded saying: so, i thought: it will never be the way it was, and you will never get back your normal life. and i found that really bad. and so just to have back this normality. and yes, the normality is another one now, but also good. (chek2, breast cancer) the knowledge about the results of the genetic testing is also seen in close correlation to everyday-life normality and social relationships. for example, katharina reports feeling the predicament of keeping something (the information about risk) for herself, as a secret towards children, parents, or other family members, and to the impact which this has on their social environment: well, you can’t always talk about everything [when the children are there], can you? (atm, breast cancer) dealing with stress another important factor connected to the preservation of quality of life and normality is the concept of stress. the strategies to balance stress in everyday life build the core of understanding quality of life and the concept of hl, which will be described further below. one strategy of stress regulation is to adapt one’s personal attitude towards life circumstances by, for instance, becoming more relaxed. stefanie responded to the question of how does the knowing about risk impact her everyday life saying: just to slow down a little, to be a little bit more relaxed and, you sometimes get to work on that, but it is difficult to put it into practice. (brca2, no cancer) a further strategy to balance stress is related to the interaction with others and training one’s own ability to put personal capacities into centre as in the case of sabrina: i am allowing myself more time for things; these stressful things where i used to think “i have to, i have to, i have to”—these are more indifferent to me now.” (palp2, breast cancer) additionally, christina, for example, has also identified and employed stress management strategies in everyday life that are connected to certain activities, habits, and behaviour: yeah, somehow not to have so much stress all the time. exercising every day and paying attention to healthy eating, also for my kids. then… well. then you also realise that life is short and that you ought to make the most of it as best as you can. (brca2, no cancer) the findings of this study show that the concept of quality of life is primarily seen in its individual and subjective dimension, being used as a synonym for normal life. regulating stress inwards through one’s own attitude and outwards in the interactions with the social environment is seen as a key factor for preserving quality of life in the context of genetic testing. managing health on the crossroad of information, self-reflection, and expectations towards the system information and self-reflection, expectations towards the system, and role expectations and definitions in the [page 50] [qualitative research in medicine & healthcare 2021; 5:9647] article no nco mm er cia l u se on ly doctor-patient relationship emerged as central subcategories with respect to the process of managing health. information and self-reflection when asked about how they inform themselves with respect to risk and fboc, the interviewed women discussed and reflected on their personal strategies of searching for and finding relevant and trustworthy sources of information. for example, sarah outlined her motivation of getting information in addition to the regular doctorpatient conversations and kathrin advocated her need or decision to look up information on the internet: [regarding the search for information on the internet] maybe that wasn’t quite right, either. but, well, as i said, i thought the more i know, the more i’m in control, and the better that works. but, as i said, it’s just, i think that is just such a way one could deal with it, as it were…. (kathrin, familial cancer history, no cancer) yeah, that’s the way it is, you need to critically question everything. i know there are quite a few scientific publications that are not based on real studies. […] however, when i see the websites run by german clinics, by the university hospitals, i can rely on those, since, well, if even a university hospital spread rubbish, that would just be…. (sarah, familial cancer history, no cancer) thesequotations demonstrate the women’s awareness that the internet as an information channel needs to be consulted with caution and their effort to justify the way they make use of it. apart from that, kathrin and sarah describe a feeling of being unsure and timid in this information process, accentuating the complicated way information is being written as well as difficulties in finding universally correct medical information. expectations towards the system this subcategory evolved in a close relation to the topic of decision-making for risk prediction. in this context, the interviewed women discuss and evaluate the doctor’s recommendation of risk-controlling measures, on the one hand, and emphasize the importance of the feeling of making autonomous decisions, on the other. in retrospect, kathrin, for example, reflected on whether the outcome of the genetic testing had met her expectations and helped her decision-making: well, and in the end, we are human beings and not statistics […]. i first thought, well, okay. maybe we will manage that in one way or another. and then, nope, [the testing] has not brought me any certainty on no account. it brought me, so i think, uncertainty, and in retrospect, at some point, i thought, let’s wait and see, what will be, will be, and before that you cannot do anything anyway. (kathrin, familial cancer history, no cancer) nadine responded to the question concerning her experiences with doctor-patient communication describing her ideal of the doctor’s role as empathic, competent, and able to communicate at eye-level: i have the feeling that my actual gynecologist is not an incredibly well-informed doctor in this area, because he has a different specialty. but what helped me most was the counselling center for fboc in the university hospital. i have the feeling that my questions have been answered. and if i have a question, i will go there again. (brca1, breast cancer) asked the same question, katharina responded thematising her awareness of the role of self-proclaimed “annoying patient” and describes her strategies of how to avoid being seen as such by her doctors: you [as a doctor] have to talk to people. i don’t want to be annoying either, but i just want to be taken seriously and get answers, right? (atm, breast cancer) women also thematise the power relation in the doctor-patient communication and reveal their strategies to cope with it i) by actively reflecting the power constellation and asking questions (in the case of katharina) and/or ii) by asking for a recommendation on how to decide, adopting the passive role in the communication process (as in the case of jennifer): and nowadays, it is often still like that, the doctor is way up high and the patient has to, as it were, like obey or so. (katharina, atm, breast cancer) but you really are, you want to, well, the perspective is really a different one and you just want that otherpeople, so, that the doctors decide on your behalf. well, i could not have made many of the decisions by myself. (jennifer, chek2, breast cancer) the ability to manage health and risk is seen as the competence to find relevant information and adapt it to the individual context in a constant process of self-reflection, critically estimating whether a certain recommendation fits into one’s own life-world or not. the concept also includes a systemic dimension manifested in the doctorpatient relationship – being aware of the role-attributions that professionals assign to patients, being able to formulate one’s own role-expectations towards professionals, and working out strategies to manage and reflect on this power-constellation. [qualitative research in medicine & healthcare 2021; 5:9647] [page 51] article no nco mm er cia l u se on ly discussion and implications for practice the findings of this study allow for insight into different levels of knowing about, perceiving, and dealing with an increased risk of developing fboc. the women’s narratives show the entanglement of managing one’s health, the risk of getting ill, and one’s identity, as manifested through the individuals’ description of their risk perceptions. in the following, we will first discuss these risk narratives, interpret their meaning in terms of hl, and then relate our empirical data to existing concepts and theories of hl, discussing possible implications for research and practice. the meaning of health risk in the context of fboc our study revealed the intertwining of meaning-making with respect to one’s risk and hl. in our interviewees’ narratives, a health risk turns into a risk of getting ill or something that can let the illness break out and develop. this shift in the meaning of risk speaks for an increased awareness of the possibility of getting breast or ovarian cancer and a decreased risk of the possibility to maintain the condition of not having cancer in the present and future. in the case of individuals with no manifest cancer disease, this can also mean a shift in the self-attributed role definition –from a healthy individual to a patient or carrier of hidden genetic thread. as gunn et al. have demonstrated in their study on women at risk of developing fboc, it is essential to sharpen health communicators’ sensitivity for the risk explanation models of advice seekers.28 in the following discussion, we will address three conclusions regarding interviewees’ risk perceptions and their impact on hl in the sense of a person’s management of health information and health behaviour. feeling about and understanding of risk as a multifaceted concept our findings show that the appraisal of risk has a dualistic nature: intuition is seen as a trustworthy source of risk awareness; at the same time, it gets meaningful only if it attains the status of factual knowledge, providing some extent of scientific value that can be quantified, measured, and observed. the interviewed women see risk as a theory of probabilities and statistical data that should be taken seriously, but at the same time they oppose these objectivity claims to their everyday experiences. these findings can be discussed within the framework of slovic et al.’s theory of risk, giving us more information about the way individuals realise, perceive, and negotiate risk within their experiential system, questioning the attributed value of its accurate numerical perception.8 this underlines that risk literacy is much more complex than simply understanding risk in correct statistical terms. our findings draw a specific picture of risk in the context of prevention, locating genetic risk in closer proximity to disease than to health; genetic predisposition is perceived as a dormant disease that can break out under certain conditions. with a view to the counselling practice, we recommend reserving a definitional space for discussing genetic risk vs. disease (incorporating patients’ explanatory models) in the patient-doctor communication and genetic counselling. genetic testing as a signpost and as a trigger for individual risk management according to our findings, intuition is often the reason for choosing genetic testing, and the testing procedure is seen as a way to technicise one’s intuition and give the subjective feeling of fear and uncertainty an objective, medically approved face. dealing with risk consists of renegotiating its dualistic nature in each individual situation of decision-making and in the construction of a person’s individual life narrative before and after genetic testing. with respect to healthcare practice, these findings can offer a fruitful ground for future work in the sphere of genetic counselling and communication, delivering focal points for more patient-centred communication by addressing the individual’s lived experiences, identity, and life-world. risk in a close relation to (hypothetic) disease perceptions the ideas about the potential disease may be crucial for dealing with and interpreting risk.22 these often arise based on past experiences of others (often family members, friends, or patients if the person works in healthcare). in addition, the understanding of disease as a phenomenon varies between a universal dimension, being seen as an almost normal condition (all people have some disease), and a personal dimension, considered as a particular threat due to one’s own risk genes. this dna fraught with risk is, on one hand, seen as a trigger or even an early stage of the disease, and, on the other hand, as a matter of a person’s own responsibility. as a recommendation for counselling practice, both the perception of the potential illness and the topic of individual responsibility (not only in terms of agency, but also as a possible burden) should, in our opinion, gain more relevance in the patient-doctor-communication. health literacy in the context of risk – different faces and diverse facets the above outlined facets of risk perceptions among individuals who have undergone genetic testing in order to learn more about their risk of getting fboc open up a new possible perspective of approaching the concept of hl. in the following, we will embed our findings into three conceptual dimensions of hl discussed in the recent literature. [page 52] [qualitative research in medicine & healthcare 2021; 5:9647] article no nco mm er cia l u se on ly health literacy between personal and relational concerns the findings of our study mirror the academic discussion on hl, defining it as an individual set of abilities, attitudes and lifestyle,16 evolving within a specific health/disease situation,20 manifested through and formed by communicative practice.29 we argue that in the context of risk, hl should be understood in both its individual and relational dimension, emphasizing its meaning as communicative action.30 as the results of our study show, the way individuals deal with health risks is strongly influenced by their own identity. the personal understanding of quality of life, the role of stress, and the social environment have an impact on how individuals deal with risk and illness. similar to the findings of sanders et al.31 our study shows that being an observer of someone else’s suffering leads to the projection of these impressions and fears on one’s own possibility to become ill and thus forms the understanding of health-oriented behaviour. this entanglement between the individual and the collective/relational dimension of the concept of hl leads us to ethical issues regarding the fine line between agency and genetic responsibility. our results are in line with existing studies,12,32 showing that genetic risk is seen not only in its medical relevance in terms of prediction and prevention among family members, but also as a factor influencing social and family relationships. referring to this, we strongly support the call by maddock et al.33 for improvements in risk communication, emphasizing the need of paying attention to the topic of telling the family. in the counselling practice this may imply the use of strategies to increase awareness for the relational responsibility in a familial context, providing recommendations for communicating risk to family members, and encouraging individuals to engage in reflections on the consequences of knowing about risk for themselves and for their family members. on an organisational level, it may be helpful to integrate and further develop complementary family counselling. health literacy as interdependence between individual and (health) system hl is mostly seen as an individual-centred concept which means that individuals apply a set of abilities and attitudes to manage health information in a concrete health/disease situation in order to achieve the best possible health outcome.16 nevertheless, a striving for enhancing the organisational/systems-related dimension of the concept can be observed in the academic field.34 in our study, this dimension becomes visible through the description of the expected roles of doctors in the consultation and healing process. holmberg et al. found that the most important factor for deciding on the intake of a certain medicine for the treatment of breast cancer was the doctor’s recommendation.35 on one hand, this can mirror trust in the search for orientation in an ambiguous situation. at the same time, it may also demonstrate the power gap in an existentially threatening decision-making situation. for example, dixon-woods et al. have shown, in their research among women who consented to surgery in obstetrics and gynaecology, the weakness of the consent process as a safeguard of autonomy (p. 2742) in the context of hospital structure and rules of conduct.36 our findings suggest similar mechanisms in the case of decision-making on risk prediction and preventive interventions— both the impact of doctors’ recommendation on a certain preventive decision and the felt power gap in the consulting situation, emerged as relevant categories during the research. nevertheless, our study does not provide enough data to draw general conclusions about shared decision-making in the context of risk, and, hence, calls for further research on this topic. according to our findings, the concept of stress appears to play a strategic role in the process of coping with health risk. our analysis showed that our interviewees address stress both as an alert system enabling a successful risk control and, at the same time, as an external and internal source of hidden and uncontrollable danger. while the internal danger is associated with the feeling of anxiety, the external one is closely related to stress caused by the health system and can be discussed in the wider context of organisational hl. while the health system is seen as a source of healing in terms of risk control, it is also perceived as a source of stress that can provoke a disease breakout. being health literate, from the perspective of the person at risk, in this context not only means complying with the health system and correctly understanding risk information, but particularly finding an individual balance to regulate both sources of stress. from the perspective of organisational hl, it is worth addressing the question of how a system can reduce stress in the case of genetic prediction and how it can provide a supportive environment for individual hl. our study provides some focal points for understanding hl in its communicative dimension;29 this is in line with the findings of sarangi et al.37 who describe risk assessment and management as a dynamic process of negotiation between advice seekers and professionals, thereby co-constructing and putting into perspective the meaning of risk. we strongly believe that for research and counselling practice it will be fruitful to pursuit further research on possible tools and instruments that may support the process of interaction as a space where individual and system meet, and that could contribute to the evolution of a joint, collaborative hl. critical health literacy as a resource for risk savvy the interpretation of the risk narratives in the context of fboc and their relation to the concept of hl discloses one further crucial dimension of handling health information on risk – critical hl as the ability to assess [qualitative research in medicine & healthcare 2021; 5:9647] [page 53] article no nco mm er cia l u se on ly the credibility and applicability of the risk information and to challenge its meaning.13 the findings of our study suggest that it is closely intertwined with quality of life; in particular, with regard to the critical appraisal of information and the ability to assess its personal relevance.13 in the context of our research, critical hl becomes relevant in the process of relating health information to one’s subjective quality of life. the women’s narratives reflect an attempt to carefully select and apply those pieces of information which do not interfere with their quality of life in an inacceptable way and, hence, outweigh the potential health benefit. while the sacrifice for the future and the loss of the feeling of not knowing is seen as a justified sacrifice in the name of life, the sacrifice in the present is seen as burden and a cut in the individual quality of life. the delicate trade-off between benefits and harms, expected gain and taking a loss was also discussed by bloom et al. with respect to prophylactic mastectomy; they found that women were ready to pay an unexpectedly high price (i.e., sacrificing their breast) for a relatively small reduction of risk.38 based on their findings, the authors recommend that instead of putting risk statistics at the centre of communication, physicians should rather emphasize patients’ lived experiences in order to support them in being prepared for the emotional and physical consequences of their decision. with respect to the practice and in line with this recommendation, we argue that the promotion of critical hl may enable an individual not only to critically analyse information,14 but also to incorporate the identity (attributed roles and expectations), life narratives about health and risk, familial relationships, and everyday situations which may be influenced by the knowledge of genetic risk or the distress before testing. this is why we believe that it might be a winning approach to search for ways of promoting critical hl in the counselling practice, embracing the concept of subjective quality of life, and integrating it into institutionalised communicative action. to sum up: the genetic testing is not an event that triggers and forms patients’ attitudes towards the questions of risk, health and illness. it is much more a process that brings these attitudes, values, and ideas to the surface. this is the reason to suggest that patients’ explanatory models of risk, their general attitude towards health and disease, their lived experience39 and biographical background should be taken into consideration in the course of genetic counselling in order to promote both individuals’ and doctors’ hl. methodological reflection, strengths, and limitations limitations on two different levels – setting and methodology – need to be discussed in the context of this study. the definition of inclusion and exclusion criteria was chosen in close agreement with medical experts according to the current state of medical evidence concerning risk prediction in the field of fboc. in this way, persons who believe to be at risk without having a medical proof of their intuition in terms of genetic testing were excluded from our study. hence, the composition of our sample does not unrestrictedly mirror the claim “to focus on the subjective perceptions of risk and hl.” apart from that, we also excluded persons who had been recommended to participate in a genetic testing and decided against it. in addition, in the case of fboc, like for many other conditions, a clear demarcation between not at risk, at risk, and ill is not always possible (e.g., in the case of women who had breast cancer and underwent a genetic testing for the healthy breast). hence, a differentiated definition of diverse at-risk conditions to be eligible for our study was needed. based on our experience, we therefore recommend considering time for discussion and agreements with the respective clinical partners. conclusions given the increasing discussions and critical voices concerning the theoretical anchoring and conceptualisation of hl and the large variety of its existing definitions in recent years, the findings of this study suggest some complementary cornerstones for theory generation based on qualitative data, approaching hl from a bottom-up perspective. in our opinion there is a need for more explorative, collaborative, and interdisciplinary research in this field. we, therefore, call for an alternative and more holistic approach to hl in science, medical practice and research, and the development of tools that address both provider and recipient of health services at once. risk prediction in the context of health and disease is always a call for action and can have positive, but also negative, consequences for an individual’s life. in the case of genetic risk, it is not only a call for action for the affected person, but also for relatives and family members. in this context, the relational, collective dimension of hl is crucial for the better understanding of the concept and needs to be considered when developing hl promoting interventions. technical innovations in the field of genetics and predictive medicine will beyond doubt lead to the detection of an increasing number of risk factors. this will present hl research, politics, and public health for the next generations with the challenge of mediating this ever-expanding medical field with corresponding considerations concerning decision-making, prevention, and stress management in the view of persisting statistical uncertainty. we, therefore, believe that a definitional space needs to be reserved for discussing genetic risk vs. disease, incorporating patients’ explanatory models in patient-doctor communication and in genetic counselling. [page 54] [qualitative research in medicine & healthcare 2021; 5:9647] article no nco mm er cia l u se on ly references 1. rhiem k, bücker-nott h-j, hellmich m, et al. benchmarking of a checklist for the identification of familial risk for breast and ovarian cancers in a prospective cohort. breast j 2019;25:455–60. 2. hauke j, horvath j, groß e, et al. gene panel testing of 5589 brca1/2-negative index patients with breast cancer in a routine diagnostic setting: results of the german consortium for hereditary breast and ovarian cancer. cancer med 2018;7:1349–58. 3. jenkins r. social identity. 2nd ed. london: routledge, 2014. 4. appleton s, fry a, rees g, rush r, cull a. psychosocial effects of living with an increased risk of breast cancer: an exploratory study using telephone focus groups. psycho-oncology 2000;9:511–21. 5. caiata-zufferey m. genetically at-risk status and individual agency. a qualitative study on asymptomatic women living with genetic risk of breast/ovarian cancer. social science & medicine 2015;132:141–8. 6. bluman lg, rimer bk, regan sterba k, et al. attitudes, knowledge, risk perceptions and decision-making among women with breast and/or ovarian cancer considering testing for brca1 and brca2 and their spouses. psycho-oncology 2003;12:410–27. 7. kenen r, arden-jones a, eeles r. healthy women from suspected hereditary breast and ovarian cancer families: the significant others in their lives. eur j cancer care (engl) 2004;13:169–79. 8. slovic p, finucane ml, peters e, macgregor dg. risk as analysis and risk as feelings: some thoughts about affect, reason, risk, and rationality. risk anal 2004;24: 311–22. 9. boholm å. the cultural nature of risk: can there be an anthropology of uncertainty? 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[page 56] [qualitative research in medicine & healthcare 2021; 5:9647] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2020; 4:8801] [page 75] introduction healthcare systems are increasingly adopting interprofessional collaborations that harness the range of expertise and skillsets of medical and social care professionals to provide high quality and effective care.1 one of the primary settings for this model of healthcare is the patientcentered medical home (pcmh), where patients can receive more coordinated and higher quality multidisciplinary care.2 the pcmh model for primary care was supported by the patient protection and affordable care act of 2010 and a number of professional organizations including the american college of physicians, resulting in widespread reform of primary care delivery.3 a number of studies have evaluated pcmh from the health care provider perspective.4-7 for example, attending physicians and residents reported improvements in care coordination, quality and safety of care after the introduction of pcmh but also highlighted inadequate staffing and clinic hours.6 another study found that nurse care coordinators were the single most valuable element of a payer-based pcmh while the online data portal was the least valuable.4 specialist practice reform has lagged, resulting in the development of the analogous patient-centered specialty practice model by the national committee for quality assurance (ncqa) in march 2013.8 the nsqa standards largely aim to improve care coordination between primary and specialty practice as well as between specialty practices.8 prior research has explored the adoption of the medical home model in a wide range of specialties including radiology, urology and gastroenterology.9-11 there is growing evidence that a specialty medical home (smh) can improve clinical efficacy, quality of care, and help reduce avoidable emergency department (ed) visits, hospitalizations, and procedures,12-16 including in the context establishing a medical home for patients with inflammatory bowel diseases: a qualitative study ksenia gorbenko,1,2,3 eliezer mendelev,4 marla dubinsky,5 laurie keefer3,5 1population health science & policy, icahn school of medicine at mount sinai; 2institute for health care delivery science, mount sinai health system; 3susan and leonard feinstein ibd center, mount sinai hospital; 4new york university school of medicine; 5division of gastroenterology, mount sinai health system, new york, usa abstract the patient-centered medical home model has gained popularity in primary care to provide early effective care to patients with chronic conditions. prior research on specialty medical homes has been cross-sectional and focused on patient outcomes. the objective of this longitudinal qualitative study was to identify best practices in establishing a specialty medical home in inflammatory bowel diseases (ibd home). the multimethod study included direct observations of multidisciplinary team meetings (30 hours over one year) and in-depth interviews with individual team members (n=11) and referring physicians (n=6) around their participation in the ibd home. all interviews were professionally transcribed verbatim. two researchers coded transcripts for themes using nvivo software. weekly team meetings (n=9±3) included behavioral health providers, nurse practitioners, nurses, dietitians, a clinical pharmacist, and clinical coordinators. physicians referred patients with psychosocial comorbidities to the ibd home. initially the team enrolled all referred patients. later, they developed exclusion criteria and a patient complexity score to manage the volume. some providers reported increase in their workload (social work, nutrition) while others’ workload was unaffected (gastroenterology, nursing). no physicians attended team meetings regularly. regular in-person meetings helped to strengthen the team. involving physicians as consultants on an ad hoc basis without regular meeting attendance empowered other team members to take ownership of the ibd home. correspondence: ksenia gorbenko, one gustave l. levy place, box 1077, new york, ny 10029, usa. tel.: +1 (212) 659-9387. e-mail: ksenia.gorbenko@mssm.edu key words: multidisciplinary team; specialty medical home; qualitative methods; team-based care; patient-centered practice. presentation: we presented an earlier version of this study as a poster at the academy health annual research meeting in 2018. conflict of interest:dr. gorbenko was co-investigator on educational grants from pfizer and abbvie, outside the submitted work. mr. mendelev has no conflicts to declare. dr. dubinsky reports equity ownership/ is co-founder of trellus health inc. she has a patent pending for “the gritt method”, licensed to trellus health. dr. keefer reports equity ownership/is co-founder of trellus health inc. she receives personal fees from pfizer, has a grant from abbvie, outside the submitted work. in addition, dr. keefer has a patent pending for "the gritt method", licensed to trellus health. acknowledgments: we thank gritt™-ibd team who welcomed the researchers and graciously shared their time with us. received for publication: 7 january 2020. accepted for publication: 9 september 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:75-82 doi:10.4081/qrmh.2020.8801 qualitative research in medicine & healthcare 2020; volume 4:75-82 no nco mm er cia l u se on ly of inflammatory bowel diseases (ibd).17-20 most studies have used cross-sectional design and focused on patient outcomes. the pcmh and smh models demand successful inter-practice coordination, which means, for example, that a primary care practice works together with a specialty practice to coordinate care delivery for particular patients who receive care from both types of providers. however, this coordination of care also happens within each practice through interprofessional work between different kinds of providers: physicians, nurses, dietitians, social workers, etc. effective teamwork within the multidisciplinary teams that make up pcmh and smh models has been shown to significantly improve clinic efficiency and patient safety.21 however, creating an effective team is challenging. healthcare professionals rarely collaborate with other health care disciplines during formative training (e.g. physicians-in-training rarely work with dietitians-in-training).22 healthcare is structurally hierarchical, which can result in allied health professionals “elbowing” to defend their scope of practice and secure their position within the hierarchy. this behavior undermines collaboration and communication between health professionals.1 few practices allow protected time for inter-professional collaboration, such as dedicated time for multidisciplinary team meetings, despite this factor being critical for getting a holistic view of the patient and their needs.23 our study studied the process of establishing an smh over a one year period in order to identify best practices. methods setting this study took place at the susan and leonard feinstein clinical ibd center, which is part of the icahn school of medicine at mount sinai and the mount sinai health system in new york city. the medical school is a unique setting for ibd as it has been on the forefront of research, identification, and treatment of gastrointestinal (gi) illness since the division’s early days. an outpatient clinic was founded and devoted solely to gi diseases in the early 20th century. the ibd center gastroenterologists cared for 7,500 unique patients with ibd in 2017 alone. gastroenterologists from throughout the state area send their most challenging cases to the ibd physicians. the center features personalized treatments, innovative strategies in disease management and the opportunity to participate in clinical trials. the centralized location of the ibd center enables extensive collaboration among pediatric gastroenterologists, adult gastroenterologists, surgeons, and allied health professionals and delivery of comprehensive care. the program we examined is called gaining resilience through transitions in inflammatory bowel diseases, or gritt™-ibd, and is an smh providing team-based multidisciplinary care for pediatric and adult patients with ibd with multiple and complex needs. here and below we use the terms “ibd home” and “gritt” interchangeably. ibd home patients receive fully integrated medical, behavioral, and nutritional care, which is collocated and delivered at the point of service within an academic ibd clinical center. the ibd home team consists of non-physician providers: a psychologist, social workers, registered dietitians, a clinical pharmacist, nurse practitioners, nurses, a population health coordinator, a child life specialist, and a clinical coordinator. in a separate article, we describe the role of physicians in this program that we found to be that of advisors rather than leaders of the multidisciplinary team.24 by the end of the second year, the program had over 150 patients enrolled in high-touch care, with about half as many having graduated from the program. program for protection of human subjects at the icahn school of medicine at mount sinai approved the protocol of the study (irb-17-02423). study design this multimethod study includes two components: i) observations of team meetings by two observers, [kg and em] (approximately 30 observation hours per year); ii) semi-structured interviews with gritt team members and referring gastroenterologists. data collection observations. one or two observers [kg and em] attended gritt meetings on a weekly basis in 2017-2018. we introduced the study to the team and secured team members’ verbal consent to take notes during their discussions. we also informed the team that they could declare any part of the conversation “off the record” at any given point in time, and it would not be recorded or otherwise reported. when a new member joined the team, we reintroduced the study and secured the new member’s consent. observers were taking handwritten or typed notes. we followed a loose observation schedule found in table 1, and took note of any questions that arose during our observations. both observers had independent meetings with the team leader (lk) and used these meetings to clarify any new developments or decisions made in the group. qualitative interviews. two authors [kg and lk] developed the initial interview guide that focused on five major topics: i) start of the program; ii) current state of the program; iii) decision making about team processes; iv) patient stories – successes and challenges; v) impact on provider wellbeing (resilience, burnout, coping). table 2 includes examples of questions we asked in each domain. two researchers [kg and em] conducted all interviews. the interviews lasted approximately 30 minutes on average and were audio-recorded with participants’ permission and later professionally transcribed verbatim. before each interview, we informed each participant that lk, who is the supervisor for some [page 76] [qualitative research in medicine & healthcare 2020; 4:8801] article no nco mm er cia l u se on ly members of the team and the team lead, would be blinded from the interview data and would only see the results of the analysis with no identifying information. after the initial round of interviews with the gritt team members were over, two interviewers used a shortened interview guide to interview gastroenterologists at the ibd center who did not participate in the weekly gritt meetings (table 3). analysis two analysts [kg and em] read all meeting notes to identify descriptive information, e.g. number of attendees, number of patients discussed and scored, decisions about the program and processes made over the year. the two analysts also coded all the interview transcripts. first, the analysts coded one transcripts per week independently using the comment function of the word-processing program, creating and applying codes to excerpts of data (open coding approach). the analysts met weekly to discuss coded interviews and come to agreement on codes and their definitions for three weeks. the researchers reviewed any disparities to ensure that the analysis was consistent across analysts. as a result of these discussions, we deemed some codes to be too specific and combined them with other codes (e.g. “emr challenges” became “emr” because there was very little data related to this topic). on the other hand, we also found some codes that were too general that needed to be split (e.g. code “communication” evolved into “team communication”, distinct from “team meeting” and “team composition”). our team was able to reach cohen’s kappa of 0.70 after three rounds of coding and discussion. after the first two interviews were discussed, the analysts used nvivo 11 software24 to assist with data coding and editing of the emerging codebook. [qualitative research in medicine & healthcare 2020; 4:8801] [page 77] article table 1. observation schedule topics and questions to observer. topic questions to observer attendance how many people? who’s present? who’s missing? patient queue describe a few patients discussed today, in particular success or failure stories. who presented the patient? how? what next steps were identified? how did team members react to the patient story? decisions around the ibd home process what process issues were discussed? what decisions were made? was a point person identified to carry out these new process decisions? changes in team meeting what was surprising or out of the ordinary in today’s meeting? table 2. gritt team interview guide: topics and sample questions. topic sample questions program start can you describe some of the first meetings? who was present? current state of program what do you like about the team meeting? is there anything you would like to change? how do you decide which patients need to be discussed in the meeting? when do you mention ibd home to patients? e.g. during visit, after conferring with a colleague decision making about the ibd how are decisions about the processes for the ibd home usually made? do you participate in decision home processes making? give some examples. patient stories: successes and challenges in your opinion, what is the impact of the ibd home program on patients? can you give some examples of success stories about patients who got better because of ibd home? were there any disappointing cases? how do you handle disappointment as a team? impact on provider wellbeing how, if at all, has the program affected your daily work? do you think burnout is common in your field? what do you do to prevent burnout? table 3. gastroenterologist interview guide: topics and sample questions. topic sample questions introduction to the ibd how did you learn about the ibd home program? what was your first impression of the ibd home program? home program current interactions with ibd have you referred patients to the program? if so, how do you decide when/ which patients to refer? can home team you give an example of a patient you referred to the ibd home? how do you describe the program to your patients?what happens after a referral? have you seen any impact of the program on your patients? please describe. burnout do you think burnout is common in your field? do you think the ibd home program impacts your workload? how? no nco mm er cia l u se on ly results we interviewed 17 people in total, including 11 members of the ibd home team and 6 referring gastroenterologists (table 4). weekly team meetings (n=9±3) included behavioral health providers, nurse practitioners, nurses, dietitians, a clinical pharmacist, and clinical coordinators. other roles included a child life specialist and a population health researcher. physicians referred patients with psychosocial comorbidities such as depression and anxiety to the ibd home. initially the team enrolled all referred patients. later, they developed exclusion criteria and a patient complexity score to manage the volume. some providers reported increase in their workload (social work, nutrition) while others’ workload was unaffected (gastroenterology, nursing). no physicians attended team meetings regularly. below we discuss team building and leadership, patient selection for the medical home, weekly team meetings, the patient complexity score, and the impact of the program on health care providers/ members of the multidisciplinary team. team building and leadership by team building and leadership, we mean to capture what we observed in the team meetings with some consistency and what team members said about their subjective perception of their team (e.g. who was in and who was out of the team, who led team meetings and who coordinated the work of the team outside of the meetings). according to our observations, which our participants confirmed, it was helpful for the team leader to have autonomy in making hiring and firing decisions. this enabled the selection of team members with the personalities and skill sets to match the unique needs of the patient population the ibd center serves. according to one team member, …as far as the different services that have been provided to the patients… [the psychologist] started those as soon as she came here, so the gritt program was like the unofficial [name] program, but as soon as [the psychologist] came here and was doing hypnotherapy, and then she hired [the social worker]. she hired… all of us. [… ] pretty much everyone on the team. and through our interviews she kind of… tailored it to what she knew and our different skill sets. the team leader described doing a listening tour when she first joined the institution. i… went around the hospital and met with a bunch of different people and heard about their either medical home or their integrated [service]. so, i met with like the primary care medical home providers and their social workers and learned how they did it. i met with people basically around the hospital that had different roles at the systems level, just a listening tour. and then that started to give me a sense of what would be doable within the sinai system, what i was hearing from them... […] things to avoid, how they were collecting data, whether they were using any kind of theoretical models… several team members reported that the team leader was “very open to receiving ideas and implementing [them]” and “supports everyone’s passions,” increasing team buy-in. for example, one team member described the team leader’s style as follows: i guess it’s also having [the psychologist] be that team leader to constantly coach us on how the [ibd home] format should be, and whether or not certain patients are eligible or not, and training us, while we’re having these meetings, to be able to fine-tune how we do this was really important, in a very nonjudgmental way. really just trying to give us the ability to talk about patients and seeing whether or not they were appropriate. leadership was also distributed so that several team members led the weekly team meeting on a rotating basis when the founding team leader was away or unable to attend. one team member thought the team leader “needs to be around more” but added that “we do fine when she’s not there, too. we know what has to get done because we’ve been doing it for a while.” patient selection by patient selection, we mean to document the informal criteria the team applied to patient cases in weekly meetings and their accounts of how these criteria evolved [page 78] [qualitative research in medicine & healthcare 2020; 4:8801] article table 4. total respondents by role. role # of personnel (n = 17) psychologist (phd) 1 social worker (msw) 1 dietitian (rd) 2 nurse (rn) 2 nurse practitioner (np) 2 health population specialist (ms) 1 clinical pharmacist (pharmd) 1 child life specialist (ccls) 1 gastroenterology attending (md) 4 gastroenterology fellow (md) 1 resident (md) 1 no nco mm er cia l u se on ly over time. initially the gritt team accepted all ibd patients referred to the program. however, the team reported that patients that refused to engage with care caused frustration among staff potentially leading to burnout. to combat this problem, the team began discussing a stricter set of criteria for enrolling or rejecting proposed patients from the program. at that point, the team agreed to focus on highly complex patients, typically presenting with a combination of active ibd symptoms and psychosocial issues such as depression or anxiety. the team would reject (“gritt-ject”) some patients referred to the program for the following reasons: i) patients did not want to be part of the program; ii) had no active ibd symptoms; or iii) had psychiatric problems beyond the scope of ibd therapists. the team also removed patients who consistently failed to engage with the program and their providers after being enrolled. according to one team member, “setting boundaries around what the team was willing to work on and what they weren’t [was very important].” this was different from most medical homes, in which neither providers nor patients have a choice. there are certain criteria, and if the patient meets these criteria, they are enrolled, even if they never make a single appointment. the team decided that they “weren’t taking in help rejecters. because that’s not a good use of resources. one, because the patient is still going to continue with nonadherence to treatment. but two, the team… people are burned out by help rejecters.” a team member ordered a “gritt-jected” stamp for each member of the team, and the term was used throughout subsequent meetings as a lighthearted way of giving back control of the patient queue to the team members. this enabled the team to focus on patients that would benefit from a high-touch approach and prevent provider burnout. weekly team meeting this theme describes weekly team meetings in terms of their composition, goals and achievements. the weekly team meeting played an integral role in the gritt program, enabling interprofessional learning, team bonding, and multidisciplinary discussions of how to approach particularly challenging cases. one team member commented: i am really surprised at how well maintained and consistent it has stayed. i mean, i guess we should attribute that to [the psychologist] because our thursday meetings are consistent. and even if she wasn’t in the office, she would say these meetings should continue. so that consistency really helped to build, i think, the longevity and also credibility of the program, both to us, the people involved, but also to the [physicians]. the meeting was never mandatory, but the team members (average of 9 people) voluntarily attended it on a weekly basis and emailed the team leader if they were unable to attend. several team members described team meetings as “fair” and “collaborative.” one team member elaborated: “i think the group gets along really well, and the goal really is for the patients, and everybody seems to care about it, and care about them.” the meetings have transformed from a “general discussion” to “very organized in terms of [discussing] psychosocial, nutrition, all the medical needs.” according to one participant who was there at the start of the medical home: initially… [th]ere wasn’t really as much organization as there is now… we would just… think of patients that needed the home and just… have an open discussion about it and what their needs were, and… assign people to follow up with them. but now it seems to be more regimented. […] we know which team players have to meet with the patients to address which needs. […] …there’s a whole systematic approach to it. even in this structured format, there was still some room for levity, as a team member explained, “there’s a lot of humor and jokes… when we leave here, we are dealing with other people’s anxieties... we have to have a place where we can just… make some light of it.” this allows people to “blow off steam and bond together” according to another team member. some team members wanted the team discussion to be more focused and efficient, expressing frustration with the pace of some meetings: “there could be meetings where we only get through two patients, and we could get through 20.” according to our observations, the number of patients discussed in each meeting varied between 1 and 15, with an average of 8 patients per meeting. this number usually included an average of 3 new patients considered for enrollment and updates on 4-5 patients enrolled in the smh. given that the meetings rarely lasted longer than an hour (sometimes up to 75 minutes), this means the team discussed each patient for under 10 minutes on average. in practice, this varied greatly. for example, in one meeting the team discussed a pediatric patient who was in crisis, and did not discuss any other patients that day. according to our observations, the number of patients discussed varied depending on who was leading the meeting. some team members encouraged detailed conversations, “a deeper dive” into one or two cases, whereas others facilitated transitions to the next case once a care plan was set. patient complexity score this section summarizes the development of the patient complexity score from the participants’ perspective. determining a precise set of entry criteria has proved challenging and the team discussed potential candidates on a case-by-case basis. about six or seven months into the program, the team developed an integrated patient [qualitative research in medicine & healthcare 2020; 4:8801] [page 79] article no nco mm er cia l u se on ly complexity score that helped streamline decision making. one of the team members described the program before the score, “it was more like an ideology, i guess, of [name of program].” the patient complexity score included a set of criteria in five domains (general health, nutrition, resilience, independence, trouble with the health system) with a total score ranging from 0 to 100 (100 signifying optimal health). selecting a maximum score of 100 was intentional to simplify scoring and interpretation based on the grading numerical scale in which “100 is good and zero is bad.” a combined score of 70 and below was used as a cutoff for enrolling a patient into the program. our respondents reported striving for simplicity because there was concern a complex scoring system could “burn out their providers really quickly.” the team leader and the population health analyst led the development of the score, utilizing recommendations from relevant team members for each domain (e.g. nurses commented on the general health domain, a dietitian helped develop the nutrition domain). for example, one team member described how she helped create one of the sub-scores: “i basically looked at many different scoring methods […], but then i adjusted it to our patient population, made it outpatient population and gastroenterology related.” the patient complexity score functioned as a communication tool to focus the team on important domains that had to be considered and bring them to consensus on the care plan for the areas with the lowest scores. initially, the entire team would score patients during weekly meetings. several scoring sessions were held to help “catch up” with scoring of the previously enrolled patients. about one year into the program’s existence and 6 months after developing the patient complexity score, each provider scored patients independently in the domain most relevant to their expertise (e.g. the dietitian scored the nutrition domain). several team members stated that they wished the scoring system was more automated, with a system that calculated the weight of each category and output a score in order to reduce human error. two years after the program started, there were between 100 and 150 enrolled patients in any given week and between 150 and 200 graduated, gritt-jected, and removed patients. gritt impact on providers in the impact on providers theme, we summarize participants’ perceptions of the impact of their participation in the medical home on their workload, professional and personal growth and well-being, and the risk of burnout. team members reported several benefits of being involved in the gritt program and participating in weekly team meetings, including interprofessional learning and collegiate support. team discussion “allow[ed] me to learn what other disciplines do in order to help that patient… so i develop more skills”, stated one team member. another emphasized that “it makes me feel good about my job because we get to talk about the positive progress in people.” without the weekly meetings in which colleagues provided updates on patients, health care providers would not normally hear from the patients who are doing well. according to one respondent, “you’re only focusing on… the sickest people in your cohort… [which can feel] discouraging at times… and you forget how many people you’re only seeing like twice a year who are functioning very highly.” burnout is a common problem in human services in general and in health care in particular. our respondents admitted that working with a large volume of medically and psychosocially challenging patients is difficult and “there’s always somebody that is… getting burned out.” according to our interviewees, weekly meetings helped build trust among group members who could “talk to each other [outside of the meeting] and seek support that way.” this usually took place outside the confines of the regular meeting on a one-on-one basis. one respondent explained that having support of a multidisciplinary team who work with the same type of patients was “very protective from burnout”: “you’re… with people who, even if they don’t have the same letters behind their name, really… are doing the same work.” in addition to collegiate support, several team members have taken steps to limit the number of patients they see in order to protect themselves against burnout. discussion according to our participants and based on the observations of weekly team meetings, the core components of the successful development of a team within the medical home setting are autonomy in hiring and firing decisions to tailor the composition of the team, regular team meetings (e.g. weekly), and development of clear enrollment, rejection, and graduation criteria. the model we describe is similar to the established practices for addressing the needs of vulnerable high-need high-cost patients25,26 but also involves several important differences. blumenthal and colleagues (2018) summarize evidence-based practices to improve care for high-need, high-cost patients: “i) targeting interventions to those patients who are most likely to benefit, ii) comprehensively assessing patients’ needs, iii) employing trained care managers to facilitate coordination among care team members, iv) implementing supportive health information technology, v) promoting patient and caregiver engagement, and vi) partnering with social service providers to address patients’ non-clinical needs.” the smh we studied, gritt™-ibd, organically over time established enrollment criteria that focused on the patients most likely to benefit from the interventions (e.g. non-adherent patients or those with several no-shows were removed from the program to preserve provider engagement). patients’ needs were comprehensively assessed in several stages: first during an intake over the phone after a referral was received, then in [page 80] [qualitative research in medicine & healthcare 2020; 4:8801] article no nco mm er cia l u se on ly the weekly team meeting, and lastly offline between individual providers as necessary to adjust the care plan. the patient complexity score communication tool facilitated care plan development and agreement across team members. thanks to the weekly gritt meetings, team members were able to piece together key information about patients in crisis in order to identify their needs and best ways to address them. the inclusion of health care professionals from different disciplinary backgrounds (e.g. social worker, dietitian, clinical pharmacist) allowed provision of services to high-need, high-cost patients. in contrast with the established practices suggested by blumenthal and colleagues, the smh team we studied relied on in-person weekly meeting rather than the work of care managers to facilitate coordination across providers. the development of ibd medical homes is a recent phenomenon and only a few have been described in the literature.10,27 at the university of pittsburgh medical center, one of the largest such centers, metrics show that one third of ibd patients are responsible for three-quarters of expenditures, primarily during inpatient care.27 this sub-population of ibd patients is particularly prone to suffering from concomitant mental illness and limited social support and would therefore benefit most from a comprehensive, team-based approach involving extensive psychosocial and nutritional support that could reduce emergency room visits and hospitalizations.27 the smh model is uniquely positioned to both improve patient outcomes and quality of life as well as reduce costs for the care of the most complex ibd patients. our data support the possibility that medical homes may also benefit providers by being a source of collegiate social support that can help reduce burnout. additionally, medical homes may help reduce healthcare fragmentation by enabling high-quality care throughout the lifespan in a single, cohesively organized setting. effective collaboration and cross-training of the full spectrum of providers, including physician trainees, social workers, psychologists, nurses, pharmacists, and dietitians can help prevent future fragmentation. this collaboration was particularly evident during weekly team meetings, due to the protected time for team building and case management that occurred during the formative months in the beginning of the smh we studied, gritt™-ibd. our study also has some limitations. for example, our observations are limited to a single ibd medical home with a unique patient population and providers that may not be transferable to other settings. this study was started about a year after the start of the program, preventing comparison of provider perspectives at the start of the program to their experiences at the time of the observations and interviews. nonetheless, we believe our findings may be useful to other centers looking to develop a medical home for ibd patients if care is taken to elicit input from the team members during the development process. it is also possible that this research on ibd home may be relevant to medical homes in other disciplines that involve specialty chronic disease management, such as rheumatology or endocrinology. this study is unique in that the two qualitative researchers were embedded in the medical home team, which led to the lines between the researchers and the team members blur. this qualitative study created the safe space for a feedback loop between the team members and the team leader, with the researchers discussing the evolution of the medical home, its methods, and its goals regularly with the team. in this study, we used qualitative research methods in an applied manner. this marks a transition away from the traditional extracting nature of research towards an inclusive co-creation and co-team building with the input from anonymous interviews and systematized findings. our institution recognized the innovative nature of this team building approach by awarding the multidisciplinary medical home team with a dean’s healthcare system team science award in 2019. health care professionals aiming to build a medical home program could benefit from enlisting a qualitative researcher to collect ongoing feedback from their team. qualitative researchers should pursue partnering with clinical teams to expand their understanding of the clinical perspectives. ultimately, these collaborations can lead to more clinically relevant and better designed studies as well as theoretically informed and strategic program development. references 1. fox a, reeves s. interprofessional collaborative patientcentred care: a critical exploration of two related discourses. j interprof care 2015;29:113-8. 2. clay ma, sikon al, lypson ml, et al. teaching while learning while practicing: reframing faculty development for the patient-centered medical home. acad med 2013;88:1215-9. 3. kirschner n, greenlee c, american college of physicians. the patient-centered medical home neighbor: the interface of the patient centered medical home with specialty/ subspecialty practices. american college of physicians. philadelphia, pa; 2010. 4. gimm g, goldberg dg, ghanem n, et al. provider experiences with a payer-based pcmh program. j gen intern med 2019;34:2047-53. 5. cronholm pf, klusaritz h, nguyen gt, et al. resident engagement in the patient-centered medical home. fam med 2016;48:603-12. available from: https://www.stfm.org/familymedicine/vol48issue8/cronholm603 6. sklar m, seijo c, goldman re, eaton cb. beyond checkboxes: a qualitative assessment of physicians’ experiences providing care in a patient-centred medical home. j eval clin pract 2019;25:1142-51. doi:10.1111/jep.13136 7. loeb df, bayliss ea, candrian c, et al. primary care providers’ experiences caring for complex patients in primary care: a qualitative study. bmc fam pract 2016;17:1–9. available from: http://dx.doi.org/10.1186/s12875-016-0433-z 8. huang x, rosenthal mb. transforming specialty practice [qualitative research in medicine & healthcare 2020; 4:8801] [page 81] article no nco mm er cia l u se on ly — the patient-centered medical neighborhood. n engl j med. 2014;370:1376–9. 9. itri jn. patient-centered radiology. radiographics. 2015;35:1835-46. 10. regueiro md, mcanallen se, greer jb, et al. the inflammatory bowel disease specialty medical home: a new model of patient-centered care. inflamm bowel dis 2016;22:1971-80. 11. sakshaug jw, miller dc, hollenbeck bk, wei jt, hollingsworth jm. urologists and the patient centered medical home. j urol 2013;190:1345-9. 12. friedberg mw, rosenthal mb, werner rm, et al. effects of a medical home and shared savings intervention on quality and utilization of care. jama intern med 2015;175:13628. available from: http://archinte.jamanetwork.com/article. aspx?doi=10.1001/jamainternmed.2015.2047 13. kirschner n, barr ms. specialists/subspecialists and the patient-centered medical home. chest j 2010;137(1):200-4. available from: https://linkinghub.elsevier.com/retrieve/pii/ s0012369210600347 14. kruimel j, leue c, winkens b, et al. integrated medical– psychiatric outpatient care in functional gastrointestinal disorders improves outcome. eur j gastroenterol hepatol 2015;27:721-7. doi: 10.1097/meg.0000000000000335. 15. friedberg mw, schneider ec, rosenthal mb, et al. association between participation in a multipayer medical home intervention and changes in quality, utilization, and costs of care. jama 2014;311:815-25. available from: http://jama.jamanetwork.com/article.aspx?doi=10.1001/ja ma.2014.353 16. koltun wa. better together: improved care of the ibd patient using the multi-disciplinary ibd center. expert rev gastroenterol hepatol 2017;11:491-3. doi: 10.1080/ 17474124.2017.1309289 17. szigethy em, allen ji, reiss m, et al. white paper aga: the impact of mental and psychosocial factors on the care of patients with inflammatory bowel disease. clin gastroenterol hepatol 2017;15:986-97. available from: https://linkinghub. elsevier.com/retrieve/pii/s1542356517302793 18. mikocka-walus aa, andrews jm, bernstein cn, et al. integrated models of care in managing inflammatory bowel disease: a discussion. inflamm bowel dis 2012;18:1582-7. available from: https://academic.oup.com/ibdjournal/article/18/8/1582-1587/4607736 19. click b, regueiro m. the inflammatory bowel disease medical home: from patients to populations. inflamm bowel dis 2019;25:1881-5. doi:10.1093/ibd/izz062 20. regueiro m, click b, anderson a, et al. reduced unplanned care and disease activity and increased quality of life after patient enrollment in an inflammatory bowel disease medical home. clin gastroenterol hepatol 2018;16:1777–85. doi:10.1016/j.cgh.2018.04.007 21. long t, dann s, wolff ml, brienza rs. moving from silos to teamwork: integration of interprofessional trainees into a medical home model. j interprof care 2014;28:473-4. 22. leasure el, jones rr, meade lb, et al. there is no “i” in teamwork in the patientcentered medical home: defining teamwork competencies for academic practice. acad med 2013;88:585-92. 23. hager k, st hill c, prunuske j, swanoski m, anderson g, lutfiyya mn. development of an interprofessional and interdisciplinary collaborative research practice for clinical faculty. j interprof care 2016;30:265-7. 24. godau r. qualitative data analysis software: nvivo. qual res j 2004;4. 25. blumenthal d, mccarthy d, shah tb. academic medical centers and high-need, high-cost patients: a call to action. acad med 2018;93:1617-9. 26. mccarthy d, ryan j, klein s. models of care for highneed, high-cost patients: an evidence synthesis. issue brief (commonw fund) 2015;31:1-19. 27. kosinski lr, brill j, regueiro m. making a medical home for ibd patients. curr gastroenterol rep 2017;19:20. doi: 10.1007/s11894-017-0561-1 [page 82] [qualitative research in medicine & healthcare 2020; 4:8801] article no nco mm er cia l u se on ly layout 1 introduction a distinguishing feature of applied health communication scholarship is its capacity to intervene and make a positive difference in response to “real life” problems.1 when we were invited to participate in one healthcare network’s interprofessional task force to address the issue of difficult cases in the inpatient setting, we saw an opportunity to improve outcomes for patients, healthcare practitioners, and the organization. in brief, we came to understand difficult cases as those that i) include lengthy and/or costly hospital stays, ii) lead to poor or unanticipated outcomes, and iii) include complex communication among multiple stakeholders. this article presents a definition of difficult cases that distinguishes them from medical error, describes the development of the difficult case consultation (dcc) process including its format, and offers outcomes from a preliminary review of the intervention by clinical staff at the hospital. our project reflects the goals and practices of action research, which demands close collaboration between researchers and professionals to improve healthcare practice.2,3 our approach also owes much to the field of organizational rhetoric, which analyzes the nature of organizational life through the persuasive practices of language. foundational articles by cheney4 and crable5 established the applied nature of organizational rhetoric, arguing that insights into the pragmatic workings of an organization can be accessed via the study of its symbols, whether physical, behavioral, or verbal. the dcc is a facilitated, collaborative, and structured process in which members of an interdisciplinary clinical team i) recount the story of a difficult case (ideally, while it is in progress), ii) analyze the narrative elements of the story, and iii) reframe and retell the story using a different set of narrative assumptions. the point of this narrative reframing is to move the team members’ perceptions of agency from the patient or family to the healthcare organization and its workers, including the team members. because the dcc interrogates how the language of particular teams both enables and constrains their clinical decision-making and actions when dealing with problems or “issues,” our investigation is methodologithe difficult case consultation: an intervention for interprofessional health communication elissa foster, jay baglia health communication, college of communication, depaul university, chicago, usa abstract an interprofessional group of healthcare practitioners sought a new approach to the early detection, prevention, and resolution of “difficult cases” in the inpatient care context. an action research project addressed this need by developing a narrative re-framing tool that helped reveal entrenched assumptions regarding the root causes of difficult cases in the hospital. the intervention method that emerged from the project — the difficult case consultation (dcc) — is a theoretically-grounded process that helps teams to analyze and address complex communication problems in interprofessional healthcare contexts. collaborative processes grounded in theory have proven to be the most successful when seeking to optimize healthcare team communication. the article describes the collaborative development of the dcc, presents two cases illustrating the process, and describes systemic factors that exacerbated the emergence of difficult cases in the inpatient context. correspondence: elissa foster, health communication, college of communication, depaul university, 14 east jackson blvd., chicago, il 60604, usa. e-mail: efoste10@depaul.edu key words: action research; health communication; interdisciplinary health team; medical error; root cause analysis. acknowledgements: the authors wish to acknowledge lou lukas, md, for her leadership of the original interdisciplinary working group; and krista hirschmann, phd for her insights during the early stages of the project. availability of data and materials: primary source materials analyzed during this study are not publicly available. ethics approval and consent to participate: not applicable. informed consent: not applicable. received for publication: 15 july 2021. revision received: 1 january 2022. accepted for publication: 3 january 2022. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2021 licensee pagepress, italy qualitative research in medicine & healthcare 2021; 5:9977 doi:10.4081/qrmh.2021.9977 [page 84] [qualitative research in medicine & healthcare 2021; 5:9977] qualitative research in medicine & healthcare 2021; volume 5:9977 no nco mm er cia l u se on ly cally aligned with both applied health communication and organizational rhetoric.6 the goals of the project were: i) to operationalize the concept of “difficult cases” from the perspective of the participants; ii) to highlight the role of the healthcare system (and not merely individual actors) in difficult cases; iii) to develop and test a reproducible group process (eventually named the “difficult case consultation”); and iv) to gather feedback from health care practitioners regarding the utility of the dcc to their clinical work. as we came to understand and define them, difficult cases are those that can involve a lengthier than expected hospitalization, poor outcomes for the patient, and high levels of stress for healthcare team members and patients’ families. however they play out, difficult cases always impinge upon a system of finite resources—financial, physical, and emotional—for patients, family members, and healthcare providers and require engagement in multiple complex and difficult conversations. like “never events”7 that are indicators of poor quality health care, the difficult case may be easily recognized in retrospect as something to avoid. however, “never events” such as wrong-side surgeries or incompatibility of blood type in transfusions are, by definition, rare and preventable, whereas the difficult cases we encountered seemed both inevitable and extremely difficult to control once in play. one reason for this seeming inevitability was that the origins or predictors of the difficult case were not as easy to identify as a procedural or diagnostic error. at the same time, most practitioners involved in the difficult cases we reviewed reported experiencing a “gut instinct” that a case was not going to proceed or end well. part of the challenge of responding to the difficult case, therefore, involves team members being willing and able to voice concerns early enough in a patient’s care to prevent exacerbation of a problematic situation and subsequent downward spiral. in this report, we first present the background of the project including the macro and mezzo dimensions that impact difficult cases and the theoretical frameworks we employed in designing the intervention. we then describe the evolution and testing of the dcc process over the course of five meetings with an interprofessional team of eleven health practitioners; our description of these five meetings summarizes what was an emergent, collaborative, and iterative series of conversations from which the dcc reframing process emerged. we then illustrate the narrative reframing at the heart of the dcc process by summarizing two exemplar cases, presenting each case as it would typically be conveyed in a clinical setting and as it was told after dcc reframing. we present the preliminary assessment of the dcc as it occurred at a meeting of approximately 100 employees of the hospital, and we conclude with a discussion of the dcc as a communication-based intervention along with our intended next steps. background national context (the macro level) many factors contribute to the complexity of difficult cases, including the aging of the population,8 the rising incidence of chronic and complex illness including obesity and diabetes,9 the ballooning costs of health care due to a dysfunctional system, the negative impact of the medical hierarchy on communication and collaboration across professional boundaries,10,11 and the implementation of the patient portability and affordable care act with its attendant calls for greater accountability, quality, and teamwork in the delivery of care.12 in addition, the construct of “health care quality” is multidimensional and not understood in the same ways by patients and healthcare practitioners or administrators. poor documentation, contraindications of pharmaceuticals, problematic communication practices among interdisciplinary staff members, as well as inadequate nurse-to-patient ratios all threaten optimal patient care and outcomes. patient actions and a lack of agreement among family members about courses of treatment can also add challenges to already complex systems of care. interprofessional teamwork in the health context has gained considerable interest among practitioners, administrators, and researchers in the last two decades. in a systematic review of the research, schot et al.11 describe how healthcare professionals bridge gaps based on disciplinary differences using communication, negotiate overlaps in care responsibilities based on clinical processes, and create opportunities for collaboration by establishing physical space and adjusting professional practices. distinct professional cultures bring about many of the challenges to successful collaboration among team members who have different training, values, and norms of communicating. furthermore, these socialized differences often result in power imbalances with regard to team members and their ability and willingness to contribute perspectives.12 nevertheless, meta-analyses have demonstrated how healthcare teams can be effective as well as challenging.13 in this project, we recognized interprofessional communication in teams as both the cause of and the potential solution to difficult cases. difficult cases are not necessarily associated with medical error, but the framing of medical error and communication practices surrounding them offer a worthwhile point of comparison. also known as “iatrogenesis,” “adverse effects,” “nosocomial infection”, and, less directly, “complications,”14 medical errors are often associated with novice clinicians, untested procedures, and complex care. in the united states alone, medical errors are estimated to result in as many as 250,000 unnecessary deaths15 and over one million excess injuries each year. unlike medical error because there are no standard definitions or characteristics that would mark a case as “difficult,” there are no statistics to identify how prevalent the phenomenon may be. [qualitative research in medicine & healthcare 2021; 5:9977] [page 85] article no nco mm er cia l u se on ly historically, the healthcare industry’s primary efforts to minimize errors have involved penalizing—via suspension, demotion, or termination—those directly responsible for mistakes. the penalty approach typically included new rules or procedures intended to prevent the same mistake from happening again, but did not necessarily prevent similar mistakes. in contrast, root cause analysis16-18 assumes that solutions to problems are best discovered by identifying and eliminating the origins of error, minimizing problem recurrence. because a single intervention is unlikely to completely prevent recurrence of error, root cause analysis is designed to be an iterative and ongoing process. concluding a systematic review of root-cause analysis as an interventional process, martin-delgado et al.19 recommend that future research prioritize the problem of how to best translate the results of root cause analysis into practice improvements. trust issues and deeply flawed communication practices also contribute to poor outcomes for patients and hospitals.20 the wider context of health care quality and medical error, including successful approaches to addressing medical errors such as root cause analysis, contributed several key principles as we designed an intervention into difficult cases. first, we determined that the intervention must incorporate an understanding of complex causes and the role of systems (rather than individuals) in creating the conditions for the difficult case. second, we intended the intervention to target persistent cultural assumptions and practices within a given context in order to broaden its impact. third, we anticipated that intervention should be employed as an iterative process that could be revisited as the system identifies and responds to emergent difficult cases. organizational context (the mezzo level) in response to an identified need for collaboration across clinical units of the healthcare network, we (the authors) joined an interprofessional team of hospital staff to explore the reasons and the possible solutions for difficult cases. the group was convened by a physician leader in the palliative care branch of the hospital, with the intention of finding and resolving difficult cases as early as possible to avoid poor outcomes and squandered resources. although the network had experienced no sentinel events,21 a culture of reflection and improvement had been established through a number of initiatives; these included schwartz rounds22 — a structured forum in which healthcare practitioners from across the hospital network gather to discuss patient cases that spark emotional responses and call for collective sense-making — and teamstepps — developed by the agency for healthcare research and quality to guide effective teamwork to support patient safety. consequently, the organizational culture was well positioned to initiate a project in response to cases that seemed easy to recognize in hindsight, but difficult to anticipate or redirect as they unfolded. although not all of the following objectives were achieved, at the time the group was convened, the following activities were proposed: i) defining what constitutes a “difficult case;” ii) identifying the medical, legal, educational, personal, and systemic issues associated with difficult cases; iii) creating a multi-stage process for identifying and resolving difficult cases; iv) developing a plan to educate staff about the process; v) defining outcome measures; and vi) monitoring the impact of the new process over time. the core group was comprised of seven physicians from a range of specialties, one ethicist, two nurse managers, one case manager, and two health communication scholars (the authors) who served to facilitate the process as well as to provide insight into the possible communication implications of the difficult cases. theoretical frameworks early in the process, we adopted a narrative-based methodology in order to better understand the communicative and relational dynamics involved in difficult cases. narrative and medicine have a robust history that includes narrative-based clinical practices,23 narratives of patients’ experiences,24 and personal narratives of physicians.25 narrative can also be employed as an analytical tool to reveal meaningful characteristics of stories. an important assumption that underlies narrative analysis is that the story of any given event — even the seemingly objective clinical case account — can be told in myriad ways depending on the perspective and motives of the teller. narrative analysis, then, is a systematic method of exploring rhetorical choices (such as literary devices) along with how the characters, scenes, time, and plot are expressed.26 one approach familiar to scholars of rhetoric is the dramatistic pentad.27 dramatistic analysis involves identifying five elements in a given narrative: the agent, act, scene, purpose, and agency. by undertaking a dramatistic analysis and identifying the relative weight given to each of these five elements, it is possible to identify the implicit or explicit motives of the storyteller. these elements of the pentad are similar to the journalist’s toolkit: the who (agent), what (act), where and when (scene), why (purpose), and how (agency) of a news story. burkean analysis has been employed in other health contexts, such as use of spatial metaphors in stories by patients with hiv28 and facilitator responses to relationship-centered care curriculum.29 given that there are many ways to recount the story or drama of an event, applying narrative analysis to an organizational story can provide information about organizational life by identifying how a story (its characters and their motives, the scenes, and action) is described. by narratively analyzing the “facts” of an organizational story, we can reveal both conscious and unconscious choices about how organizational members make sense of a situation. by asking how else this story might be told, we can reveal opportunities for meaning and action that may not have been available under previously accepted, objective “facts.” research has shown the usefulness of examining how interprofessional teams discursively frame various [page 86] [qualitative research in medicine & healthcare 2021; 5:9977] article no nco mm er cia l u se on ly elements of their work; for example, mcdougall and colleagues30 demonstrate how cardiologists and nephrologists frame fluid management differently. goffman31 points out that frames enable entities to share common ground through language and experience and that frames create limitations when they foreclose the perception of alternate possibilities. in the section that follows, we describe the development of the dcc including the facilitation process that emerged as we pursued the goal of identifying difficult cases and their specific features, including dynamics related to interprofessional team communication. in the results section, we illustrate the dcc process and impact of narrative reframing with two composite cases, and in the discussion, we offer implications and outcomes of this project both for the context in which it occurred and as a transferable process. method: development of the difficult case consultation process researchers’ roles our perspective and function within the interdisciplinary group was complex. at the time of the meetings, we were both “insiders” (as employees of the hospital) and — as non-clinicians on a team comprised mostly of physicians — also brought an “outsider” perspective to the process. further, we facilitated these meetings and were invited to contribute to the process of case analysis by providing communication expertise when needed. we independently recorded observational notes during the meetings and met to discuss meeting outcomes after each session. thus, we functioned as full participants in the process.32 ethics and internal review the activities of the interprofessional task force fell under the category of a quality improvement (or qi) project, which made them exempt from review by the hospital institutional review board. nevertheless, we obtained permission from the participants to i) record process notes, ii) collect the group members’ notes and cases that were discussed at the meetings, and iii) write an account of the process that could be submitted for publication. mindful of patient and family privacy, the group agreed to de-identify all cases both during verbal presentation and in notes given to us. we recognized that it would be essential to provide specific examples of cases to convey our process to the reader, so, as an added privacy measure for task force members and patients, we developed composite cases33 to illustrate our results. facilitation during the developmental phase of the project, the interdisciplinary team of eleven health professionals and two facilitators met a total of five times (one hour every one to two weeks) with minimal “homework” between meetings. meeting 1: defining the difficult case we asked each member of the task force to take three minutes to contribute a case identified as “difficult” by virtue of the basic features outlined earlier: a lengthier than expected hospitalization, poor outcomes for the patient (and family members), and/or high level of stress for healthcare team members. some of these cases had lasted for many months and had multiple complicating factors and events. even so, every team member was challenged to present their story in three minutes or less, in order to draw out what was most essential to the drama of the case. these stories followed accepted format for clinical case presentations, beginning with identifying information about the patient and the chief complaint (e.g., 81 year old male with acute post-operative delirium and failure to recover), relevant history (former smoker who survived an emergency repair to a ruptured aortic aneurysm), physical findings (loss of coordination, loss of bladder and bowel control, refusal to eat, blood albumin below critical level), and clinical plan (e.g., consultations with psychiatry, registered dietician, physical therapy, and occupational therapy). because these were past cases, the classic case presentation concluded with a summary of the impact of the case and the patient’s outcome (e.g., family distress extremely high, extended stay in the cardiac recovery unit unable to transfer to rehabilitation, patient developed an infection, returned to the icu, and did not recover). using a worksheet, we asked each presenter to employ the journalist’s tools by determining the who (corresponding to burke’s agent), what (act), where and when (scene), why (purpose), and how (agency) of their individual cases. upon review, without exception and according to standard practices of clinical case presentation, when assigning the “who/agent” of the case, every presenter chose the patient. subsequently, the “what/act” described the course of the disease and therapeutic intervention. the “where and when/scene” was the hospital unit or service caring for the patient. the “why/purpose” and “how/agency” of the case laid out various complications of the disease, difficulties of treatment, conflicts among specialists, hospitalists, and primary care physicians, and/or psychopathologies of the patient or members of the family. during this initial meeting, as a whole group, we reviewed three of the eleven team members’ cases using the five ws corresponding with burke’s pentad before introducing the idea of narrative reframing. in the case outlined in the previous paragraph, this would read as follows: who (81 year old male former smoker), what (failing to recover from surgical repair to a ruptured aortic aneurysm), where and when (in the cardiac recovery unit of the hospital); why and how (patient’s refusal to eat, prolonged delirium, distressed family members, possible underlying psychiatric problems). [qualitative research in medicine & healthcare 2021; 5:9977] [page 87] article no nco mm er cia l u se on ly meeting 2: reframing the difficult case during this second meeting, we invited the participants to take one of the cases from the first meeting and reconfigure its original (customary) framing by reassigning the patient from “who/agent” to “where and when/scene” and reassigning the healthcare system from “where and when” to “who/agent.” the retelling of the case—that is, how the members of the team conveyed the story—was strikingly different in the reframed version, especially with regard to the how and why the case was difficult. we present two summary illustrations of this before-and-after effect in the results section, and it is important to note that during these initial meetings, the participants sometimes found it challenging to complete the reframing of the cases with the system in the position of “agent.” our decision to make the healthcare providers and system the “who/agent” of the story and patients the “where and when/scene” in no way reflects a devaluing of the patient’s significance or agency in these cases. rather, for the clinical participants in the dcc, this reframing exercise was intended to reveal their (often unacknowledged) influence and power so that they could perceive the roles that they and the system of care played in the outcomes of these difficult cases. meeting 3: practicing the analysis having successfully worked through the reframing of the case once, it was important to replicate the process with a different case to see if it would produce similarly meaningful results. to that end, the group collaboratively selected and analyzed a second case from the set presented at the first meeting, beginning with the original framing of the patient as “who/agent” and then reframing with the system as the “who/agent.” the group noted how the reframing allowed them to see actions and communication of the hospital system and its members that had contributed to the difficulty and intractability of the case. meeting 4: internal assessment in an effort to further assess the reliability of the process, we (i) selected another case from the set that was presented during the first meeting, (ii) split the team into two groups that engaged the narrative reframing process independently, and (iii) engages in a whole-group discussion to compare the two sub-groups’ results to see whether similar conclusions were reached regarding the systemic motives and factors of the case. the interdisciplinary team worked through four more cases in this way—having two groups independently reframe each case and then compare results—before determining that the independent analyses resulted in substantial agreement between the groups’ reframed narratives. whereas it had taken a whole meeting to reframe the initial cases, during this meeting, it became clear that, with practice, the team was able to review and reframe cases relatively quickly using the dcc framework. at the end of this meeting, we also recognized that a certain degree of saturation had been reached regarding the systemic factors in the “difficult cases;” that is, the same observations about the system began to be repeated. at this point, the group agreed that we had enough material to address the initial objectives of the task force. meeting 5: solidifying the intervention the group reviewed its progress, synthesized and verbally summarized the impact of the dcc analysis process on the group’s thinking, and established goals for a system-wide resolution process based on the narrative reframing process of the dcc. although network priorities shifted and we were not able to create the imagined identification and resolution process, the team agreed that the dcc reframing was an important technique for helping clinicians to review and discuss difficult cases in a new light and, in our experience, to collaboratively identify avenues for positive change. results: the reframed cases and preliminary review of the dcc from the cases that were presented in the course of this intervention, we determined that difficult cases in the given inpatient setting occurred when: i) the prescribed treatment options seem futile to many of those providing care, ii) healthcare surrogates (often family members) behaved in ways the clinicians did not understand or support, iii) resources employed seemed to exceed plausible benefit to the patient, and/or iv) staff distress in coping with the case was high. sometimes, the hospital ethics committee and/or inpatient case manager could be effective at bringing these cases to acceptable conclusions, but when those consultations failed to result in any meaningful progress, the cases persisted to the frustration of patients, family members, and hospital personnel alike. in this section, we offer two examples of difficult cases — first as they would typically be presented to the group at the beginning of a dcc process and then as they would appear after engaging in narrative reframing via the dcc. as described briefly in the methods section, the “before” cases bear a strong resemblance to the typical clinical case presentation and follow a motive of describing and justifying clinical decisions; the “after” cases convey quite a different narrative and follow a motive of illuminating the role or agency of the system in the action that unfolded. at the conclusion of this project, we anticipate that other interdisciplinary teams, with appropriate facilitation, could accomplish the dcc narrative reframing of a case in the course of a single one-hour meeting, with a majority of that time spent reflecting on the implications of the reframed narrative. although names of patients, family members, and providers were never discussed in the meetings so as to [page 88] [qualitative research in medicine & healthcare 2021; 5:9977] article no nco mm er cia l u se on ly protect patient and family confidentiality, we have also altered a number of facts about each of these cases while preserving an account of the dynamics of the case from the perspectives of the participants. thus we (the authors) constructed these accounts — both the “original” cases and the reframed narratives — for illustrative purposes from the process notes we recorded at the time and from worksheets completed by the participants. for the interdisciplinary team, the power of the dcc reframing lay not so much in the transformation of the facts as it did in the group’s collaboration to dismantle existing assumptions and prejudices in order to rewrite the stories. as we discuss later in this article, presenting cases with a focus on patients and their diseases is an accepted practice that marks clinical objectivity and also obscures important, systemic factors in a patient’s care. by working together to perceive and narratively construct a familiar clinical story in an unfamiliar way, the participants in the dcc were able to perceive and then question the assumptions that motivated clinicians’ actions and contributed to the difficulty of the case. in guiding the team to uncover their assumptions and critique past actions together, through structured analysis and without blame, the dcc process was cast in the light of discovery rather than culpability. the example cases are offered here as an illustration of the transformation of facts into possibilities for improved communication and patient outcomes. case 1: the problem patient as first described, this case focused on the behavior and actions of a “non-compliant” patient and “enabling” family members and was presented by a participant during the first meeting in the following general terms. a morbidly obese female in her thirties was hospitalized for treatment of a large decubitus ulcer on her thigh and buttocks, which developed from remaining immobile on a couch for several months following a fall. the treatment of the ulcer was medically complex involving a physician of record from plastics [reconstructive or restorative surgery, sometimes cosmetic], and consults from internal medicine and psychiatry who deemed the patient to be competent. the patient, however, was not compliant with care plans; for example, she refused to engage in physical therapy or to sit up to eat. the patient was hospitalized for many months with no discernible progress toward being able to discharge to home. the family members, including a sister who was an attorney, refused to support hospital staff in gaining the patient’s compliance and, at one point, consulted an orthopedist from outside the hospital network. hospital staff consulted both risk management [their own attorneys] and the ethics team in efforts to resolve conflict. communication among the hospital staff, patient, and family was often at cross-purposes regarding goals of treatment. simultaneously, hospital staff accused family members of enabling the patient and, furthermore, of craving attention and feeding the conflict. after dcc reframing, this case was recast as follows. hospital staff from plastics, internal medicine, psychiatry, the medical-surgical floor, physical therapy, ethics, and risk management undertook care of a morbidly obese patient in her thirties suffering from a large decubitus ulcer. over the course of many months, this assembly of medical professionals was unsuccessful in developing and communicating an overall care strategy, which resulted in fragmentation of daily tasks for nursing and physical therapy. medical staffing of the hospital, which dictated that attending physicians supervised the case for one week at a time, led to the patient and family perceiving no continuity of care over the course of the hospitalization, and the medical leadership in this case was unclear to them. further, hospital staff could not communicate a unified plan to the patient and family members, which led to an increasing sense of alienation between members of staff and the patient and family. the lack of coordination among the hospital staff, as well as the regularly-shifting care plans, were likely a product of short-term efforts to appease the patient and family in order to “make everybody happy,” as well as a reluctance among the hospital staff to actively address their competing interests—for example, the different goals and approaches of the medical and nursing staff compared to the advice given by risk management. case 2: a tragic end this case described the death of a hospitalized patient who had received a late-stage cancer diagnosis. in its initial form, the case focused on a deeply regrettable, but seemingly inevitable, sequence of events. a 48-year-old male presented in the emergency room with shortness of breath and was diagnosed by the attending of record—a family medicine physician—with stage iv cancer that had metastasized to the lungs. upon receiving the terminal diagnosis and a prognosis of only a few weeks to live, the patient stated that he wanted to go home to be with his wife and two teenaged children. because of the cancer diagnosis, an oncologist was consulted who disagreed with the initial prognosis given by the family physician and “took over” the case, suggesting that the patient could live for 5 to 10 years if radical treatment was successful. the palliative medicine team was also consulted; they [qualitative research in medicine & healthcare 2021; 5:9977] [page 89] article no nco mm er cia l u se on ly agreed with the prognosis given by the family physician but, for the patient, an element of mistrust had emerged due to the conflicting prognoses from the different physicians. ultimately, the patient agreed to undergo “heroic measures” in an effort to survive. despite the misgivings of the family physician (whom the patient had designated as primary care provider because he had no existing relationship with a pcp) and the palliative care team, the patient was admitted to the hospital for surgery from the er. within 10 days, the patient died while undergoing his second surgery having never returned home from that initial visit to the er for shortness of breath. after engaging in a challenging and complex dcc process, the case was reframed: the diagnosing family medicine physician (later designated as the patient’s pcp), the consulting members of the palliative medicine team, and the oncologist were called to care for a 48-year-old father who came to the emergency department with distressing symptoms that led to a devastating diagnosis. the patient expressed a clear set of priorities when given the prognosis of only weeks to live. specifically, he wanted to return home and spend time with his family. the physicians in the case failed to communicate their various perspectives effectively to one another. the oncologist “took over” the case once he was consulted and the designated family physician/pcp and palliative medicine team members were unwilling to “overrule” the specialist; they also did not recommend a second oncology consultation. in this case, the assumed medical hierarchy—in which there was a disempowering relationship between the pcp and specialist—obscured the expressed desire of the patient to die at home. the oncologist’s desire was to “give the patient a chance to live” and so he “did everything” he could to achieve the patient’s survival. the perspective of the pcp and palliative medicine team was that a distorted sense of professionalism prevented them from contradicting another physician when they believed that the patient was being given false hope—a hope that put at risk and ultimately robbed him of his ability to be at home with family in his final days. the pentadic elements from these two cases are summarized in table 1. difficult case consultation preliminary review the culmination of the interdisciplinary group’s work on the dcc process was a presentation at the hospital’s schwartz center rounds — a monthly meeting open to all members of the hospital and dedicated to conversations about the emotional difficulties of complex care or loss of life.34 the physician leader of the dcc, one of the nurse managers from the group, and the second author requested to present the process at schwartz rounds and co-chaired the forum. the first author took ethnographic field notes and (unattributed) verbatim quotations from the discussion. schwartz center rounds follow a structured format, including the stipulation that plenty of time is allowed for audience feedback. importantly, audience feedback is not permitted to be offered from a problem-solving perspective; rather, audience comments and questions are meant to acknowledge the emotional aspects of medical care and neither identify fault nor propose solutions. as in most schwartz center rounds, nurses were the largest single group represented among the 100 hospital employees present. in anticipation of this majority representation from nursing, the nurse manager introduced the description of the dcc process. she began by recognizing that in difficult cases, it is often challenging for nurses to know how to effectively pass on information, asking, “who is the team? who is in charge?” the physician leader continued by adding that physicians are frequently pulled away and miss “windows of opportunity” for consults with other team members as well as discussions with the patient and family, particularly with regard to end-oflife decisions. in many cases, she continued, the physician mindset makes the dignified death a “challenge to our profession.” she stressed the importance of frontline personnel such as nurses and hospitalists having both tools and permission to voice those “messy” situations when communication is hostile or when no one is talking. immediately prior to opening the floor to audience discussion, the second author briefly described the application of narrative analysis and burke’s pentad to the cases, as well as the oft-noted phenomenon of hospital personnel feeling “in their gut” that something is about to go wrong and simultaneously feeling unable to prevent the unraveling of a difficult case. the audience conversation began with the question, “does this happen? do you have this intuition that something is going wrong?” some of the responses are worth recording here: “we see it. doctor to doctor. the consult [specialist] who disagrees with the attending [primary care physician] but doesn’t communicate directly.” “people are so afraid of stepping on each other’s toes — to the detriment of the patient.” “physicians are not good at giving bad news, so they don’t give it.” “patients who say they don’t want anything [heroic measures] are labeled as crazy and we call in psych.” “many of these situations are not ethical dilemmas—it’s about communication.” [page 90] [qualitative research in medicine & healthcare 2021; 5:9977] article no nco mm er cia l u se on ly relatedly, one of the major initiatives in the hospital network at the time of this schwartz center rounds was an efficiency program modeled after an internationallyrecognized quality improvement process — toyota lean.35 a critical component in the lean philosophy is that each member of the assembly line is empowered to stop the process—jidoka—or pull the cord. one of the audience members offered this possibility: at the bedside, anyone should be able to “pull the cord” and call a difficult case mediation that brings everyone together to talk about the case. it needs to be an institutional priority to meet in the next 36 hours. because of the nature of schwartz center rounds, the audience responses from which these comments were selected were gathered ethnographically rather than through a more formal survey method; however, as facilitators, we were encouraged that the process made sense to this interdisciplinary group of 100 healthcare workers and that they were able to perceive and reflect on its utility in their day-to-day practice. discussion through the dcc project, we generated a number of insights into interprofessional clinical communication and difficult cases. the principle benefit we witnessed was the shift in hospital staff members’ perspectives from hopelessness and inertia to empowerment and forward movement. the emotional effect of the consultation was like the untangling of a complex knot that had kept the team [qualitative research in medicine & healthcare 2021; 5:9977] [page 91] article table 1. summary of narrative elements before and after dcc reframing. who/agent where & what/act how/agency why/purpose when/ scene case 1 before case 1 after case 2 before case 2 after the patient, obese woman in her 30s; ulcer from staying on couch after a fall. family members “enabling” and dissatisfied with care risk mgmt, ethics, plastics, internal med, psych 48 year old male with stage 4 cancer, diagnosed in the er after presenting with shortness of breath; no close relationship with a pcp palliative medicine, oncology, ed physician, family physician on call (who became designated as pcp) medical surgical floor obese patient with persistent ulcer emergency room, then medical floor 48 year old father and husband with metastatic cancer hospitalized for many months; complex and conflicting communication with hospital staff; refusal to address weight loss concerns inconsistent and indirect communication from staff; failure to act; fragmented daily tasks w/o an overall strategy, lack of medical leadership when given diagnosis and prognosis, stated that he wanted to go home to be with his family; then agreed to be admitted and undergo surgery and “heroic treatment;” never went home, died in surgery oncology “took over” the case once consulted – the designated pcp and ed physician unwilling to “overrule” specialist – didn’t recommend 2nd oncology opinion manipulative and demanding patient and family; abusive of hospital staff enablement of dysfunctional communication; power without accountability; shifting of responsibility for patient care (med service had one week on and one week off so there was no attending to lead) had the right to hear different perspectives on the case; changed his mind and needed to be respected hierarchy – disempowering relationship between pcp & specialist – needs of the patient (to die at home) not adhered to – creation of false hope patient and family need for attention and drama; comfortable with conflict; “codependent” relationships keeping the family satisfied with care; press-ganey (patient satisfaction survey) worry; unwilling to give up control or compromise with other members of the team; desire to “make everyone happy” without thinking about the long-term health of the patient. wanted to believe that there was a chance to survive; gave in to the persuasive power of the oncology consult despite initially stating wishes clearly oncologist perspective = “i gave him a chance to live” and “i did everything i could;” pcp perspective = “professionalism” prevents one physician from contradicting another to the patient no nco mm er cia l u se on ly immobilized. the second benefit of the process lay in identifying the systemic habits that reoccurred across the different cases. by identifying these patterns, the team was able to find a positive direction for system-level changes that might in the future prevent the occurrence of a difficult case or speed its resolution. we elaborate on both benefits in the sections that follow. reframing a case from hopeless to manageable a consequence of the dcc was that the language of the group shifted away from blame and scapegoating (of difficult patient personalities, complicated family members, or “arrogant” consulting physicians) and towards an appreciation for how the organizational system failed to respond optimally to the cases as they unfolded. the reframing process helped group members to perceive aspects of trained incapacity inherent in the culture of this institution and, based on our experiences elsewhere, healthcare institutions in general. we argue that perceiving this trained incapacity is a first step in overcoming it. according to burke,36 “we can’t say anything without the use of terms” (p.50) and terms that populate the discourse of a given context—a hospital system in this case—reveal both conscious and unconscious choices about how to make sense of a situation. for example, the term “adverse event” used to describe anything from a medication error to fatal iatrogenic infection is a choice that serves to both generalize and depersonalize the details of medical mistakes. in burke’s vocabulary, a terministic screen refers to habits of language that serve to repress other options for describing events or phenomena. as might be predicted, by narrating the case with the patient as the agent, the other components of the story followed suit. patients (and their families) became problems to be solved, and, consequently, the story reflected a curious absence of agency on the part of the hospital staff, who seemed almost universally bewildered regarding how to change the course of these types of events. burke27 argues that humans pursue “vocabularies that will be faithful reflections of reality. to this end, they must develop vocabularies that are selections of reality. and any selection of reality must, in certain circumstances, function as a deflection of reality.” (p.59) burke does not imply here that language choices are a conscious deflection of reality, only that deflection is the result, and is accomplished through rhetorical choices. burke36 suggests we are “goaded by the spirit of hierarchy” (p.16) or, with regard to the work of healthcare professionals, the promise of order and status. when the promise of modern medical science disappoints—as is apparent with difficult cases—a scapegoat must be identified. “occupational psychosis” is the term burke gives to the tendency of members in a given profession to perceive reality in particular ways. the dcc reframing process redirects this tendency to ascribe blame in particular ways in the medical context. as a consequence of narrative reframing, then, perhaps the tendency to scapegoat can be avoided altogether. the apparent lack of agency of the clinicians providing care was particularly surprising when we considered how several members of the group reported intuitions early in the course of these cases; the phrase “we knew this would not end well” seemed to encapsulate the feeling of both insight and helplessness in the difficult case. in every case we addressed, the members of the interprofessional group turned from a frame that placed responsibility on a distant “other” to a frame in which the hospital system’s own exigencies contributed to the poor outcomes. in case 1, the “manipulative” patient and family members were reframed as individuals who were frustrated by the situation and possibly in need of more consistent guidance and attention by the medical team. in case 2, the “unrealistic” oncologist who overrode the advice of colleagues and the wishes of the patient was seen in a different light — as a physician who believed he was doing all he could for a patient. an insight into this positive — and ultimately misguided — motive might have provided rhetorical leverage for others to point out that the patient’s voice was being silenced in the oncologist’s effort to “do all he could.” in a mirror image of the oncologist’s actions, the lack of intervention by the emergency department staff, family practice physicians, and palliative care team was reviewed in light of the realization that they put the saving of “professional face” ahead of what they knew about the patient’s prognosis, what the patient envisioned for his final days, and what they had come to believe was best for the patient. recognizing systemic factors in difficult cases the dcc process helped to highlight several ways in which a system of care can perpetrate or perpetuate a challenging dynamic among staff, patient, and family members. professional communication physicians were not likely to communicate differences of opinion directly to a colleague. indeed, two physicians writing notes on the same chart might contradict each other, but would not necessarily raise that as an issue for discussion. healthcare providers might talk to a peer in order to “vent,” but would not likely talk to the person with whom there was a communication problem. discussing nurses’ clinical perceptions, miller and hill37 report that experienced senior-level nurses employ multiple sense-making mechanisms to enhance clinical judgment, including intuition and gut feelings. although their research focused specifically on nurses’ clinical assessment of patients, we propose that the same instinctive judgments might well be in play when a system of care is in danger of becoming unstable. one implication of our research is that a process like the dcc provides a formal context in which nurses can voice these intuitive concerns [page 92] [qualitative research in medicine & healthcare 2021; 5:9977] article no nco mm er cia l u se on ly and positively impact the trajectory and outcomes of care. members of our interprofessional team described having “gut feelings” early in a case without sharing them. in the words of one of the schwartz rounds audience members, this instinct represents a moment of opportunity to “pull the cord.” despite the value of these instincts, habits of professional communication currently prohibit the outward voicing of concern, whether related to instincts about a patient’s prognosis or conflicting clinical judgements between colleagues. physicians, for example, did not make family members aware of differences in professional opinion, possibly engaging in face-saving on behalf of a colleague or themselves. we noted that professional hierarchies among various clinicians exacerbated the prohibitions against speaking up. lack of coordination different specialties had different goals of treatment. these differences were especially glaring between the “high end” specialists and the primary care physicians, but there were also differences within specialties regarding goals of treatment. predictably, the internist/generalist/family doctor wanted to maintain consistency based on what had come to be understood as their patients’ wishes. while individual attending physicians may have provided realistic prognoses, when there was regular turnover among attendings to a specific unit and/or abbreviated handoffs, there was a risk of insufficient continuity in the care of patients who fell into the realm of “difficult cases.” there was a strong conviction among the interprofessional group that the pcp should be the “quarterback” in the interests of better coordination. shifting goals of care one pattern we observed through our interaction with the team and in the analysis of the cases was that generalists, whether hospitalists or primary care physicians, were more likely to identify a realistic outcome than were specialists. generalists tended to see the “big picture” of a given patient, particularly if they were a primary care provider to the patient prior to hospitalization. and yet, the specialist-as-consult had assumed a hierarchically superior role in the hospital and often in the minds of patients, leading to a lack of clarity around goals of care. certain prognoses were not communicated clearly, and there was a tendency for uncertain prognoses to not be presented as uncertain. in health systems generally, there is rarely an established practice of laying out a realistic scope of best-case to worst-case scenarios to patients and family members. if anything is left out of the conversation, it is the worstcase scenario. also, in the difficult cases we encountered when working with the interdisciplinary team, goals of care were often inconsistent, whether between pcp and specialist, or between physician and patient. when goals did change, not everyone was kept in the loop. members of the interprofessional team conceded that it is the patient’s right to “make bad decisions.” the dcc process reminds hospital personnel to recognize the patient’s and family’s needs as more important than the occupational habits that can drive medical decision-making. in turn, family members can be recast as resources who know best the needs of the patient. mcdougall and colleagues30 advance the idea of collaborative entanglements to describe how intraprofessional and interprofessional teams negotiate meaning and framing in the desire to learn from each other, despite inconsistent professionally socialized classifications and descriptions. in short, they emphasize that diverse team members must learn to be comfortable with ambiguity. in her study of rapid-response teams, colvin12 employs knotworking as a metaphor to describe medical situations with distributed responsibilities and swiftly changing circumstances that require improvisation. the “knot” is a tightening and loosening of potential or actual clashes in light of that improvisation. as is the case with collaborative entanglements and knotworking, the dcc process reveals what are, at times, negotiated territorial tensions. what the dcc adds is the recognition that members of interdisciplinary teams must be encouraged to break free of the frames that are failing to support effective patient care and speak up when they have misgivings about the way patient care is unfolding. future directions as compelling as the results of this initial project are, we recognize that the dcc process requires testing in additional clinical environments to be certain of its utility and generalizability. plans to further test and refine the process involve initiating the dcc with another interprofessional group of inpatient providers. two additional tests of the process are needed. first, we should analyze a larger population of reframed narratives in another healthcare organizational setting to identify systemic features of communication that exacerbate difficult cases. second, we need to assess the clinical impact of the dcc on quality of care. our hope is that engaging in dcc will improve systems of communication to reduce the incidence of difficult cases and help practitioners to “head off” the unraveling of difficult cases by intervening earlier in the case with positive and collaborative communication. as the covd-19 pandemic continues to challenge healthcare systems and critical care clinicians in particular, we expect that the profile of “difficult cases” will evolve in association with this acute infection and the systemic response to what is being called “long covid.”38 effective communication and collaboration among clinicians will continue to be needed in response to difficult cases, for the good of patients and practitioners alike. [qualitative research in medicine & healthcare 2021; 5:9977] [page 93] article no nco mm er cia l u se on ly references 1. cissna k. applied communication research in the 21st century. j app commun res 2000;28:169-73. 2. de oliviera gcb, alves mr, ramalho de oliviera d. action research as a tool for transformation of the pharmacist’s praxis in primary care. int j pharm pharm 2017;9:180-5. 3. eisenberg e, baglia j, pynes j. transforming emergency medicine through narrative: qualitative action research at a community hospital. health commun 2006;19:197-208. 4. cheney g. organizational rhetoric: the practice of criticism. j app commun res 1990;18:93-114. 5. crable re. organizational rhetoric as the fourth great system: theoretical, critical, and pragmatic implications. j app commun res 1990;18:115-28. 6. meisenbach rj, mcmillan jj. blurring the boundaries: historical and future directions in organizational rhetoric. commun yearb 2006;30:99-141. 7. morgenthaler t, harper cm. getting rid of “never events” in hospitals. harvard bus rev 2015. available from: https://hbr. org/2015/10/getting-rid-of-never-events-in-hospitals 8. dieleman jl, squires e, bui al, et al. factors associated with increases in us health care spending, 1996-2013. j amer med assoc 2017;318:1668-78. 9. hajat c, stein e. the global burden of multiple chronic conditions: a narrative review. prevent med rep 2018;12:284-93. 10. defenbaugh n, baglia j, foster e. billable (h)ours: autoethnography, ambivalence, and academic labor in a healthcare organization. in herrmann a, ed. the routledge international handbook of organizational autoethnography. new york, ny: routledge; 2020. pp 191-208. 11. schot e, tummers l, noordegraaf m. working on working together: a systematic review on how healthcare professionals contribute to interprofessional collaboration. j interprof care 2020;34:332-42. 12. committee on diagnostic error in health care; board on health care services; institute of medicine; the national academies of sciences, engineering, and medicine; et al. improving diagnosis in health care. washington, dc: national academies press; 2015. 12. colvin j. knotworking in an emergency response team: understanding team communication and process. qual res med healthc 2017;1:128-37. 13. schmutz j, meier l, manser t. how effective is teamwork really? the relationship between teamwork and performance in healthcare teams: a systematic review and meta-analysis. brit med j open 2019;9:1-16. 14. gawande a. complications: a surgeon’s notes on an imperfect science. new york, ny; 2002. 15. makary m, daniel m. medical error—the third leading cause of death in the us. brit med j 2016;353:i2139. 16. françois p, lecoanet a, caporossi a, dols am, seigneurin a, boussat b. experience feedback committees: a way of implementing a root cause analysis practice in hospital medical departments. plos one 2018;13:e0201067. 17. weick k, sutcliffe k. managing the unexpected: resilient performance in an age of uncertainty. san francisco, ca:jossey-bass;2007. 18. worman d, rock m. teaching nursing students root-cause readmission analysis. nurse educ 2021;46:15-6. 19. martin-delgado j, martínez-garcía a, aranaz jm, valencia-martín jl, mira jj. how much of root cause analysis translates into improved patient safety: a systematic review. med princ pract. published online may 15, 2020. 20. hong h, oh hj. the effects of patient-centered communication: exploring the mediating role of trust in healthcare providers. health comm 2020;35:502-11. 21. the joint commission. sentinel event. 2021. available from: https://www.jointcommission.org/resources/patientsafety-topics/sentinel-event/ 22. the schwartz center (n.d.). official website. https://www. theschwartzcenter.org/programs/schwartz-rounds 23. charon r. narrative medicine: honoring the stories of illness. oxford, uk: oxford university press; 2006. 24. silverman re, baglia j. communicating pregnancy loss: narrative as a method for change. new york, ny: peter lang academic publishing; 2014. 25. foster e. physicians’ stories: autoethnography, presence, and rhizomatic inquiry. int rev qual res 2014;7:290-301. 26. taylor b. narrative analysis. in taylor b, francis k, eds. qualitative research in the health sciences. london: routledge; 2013. pp. 243-265. 27. burke k. a grammar of motives. berkeley, ca: university of california press; 1969. 28. bareiss w. space, boundaries, and identification: a dramatistic approach to hiv counter-narratives. int j comm health 2016;9:62-72. 29. chou c, hirschmann k, fortin a, lichstein p. the impact of a faculty learning community on professional and personal development. acad med 2014;89:1051-6. 30. mcdougall a, goldszmidt m, kinsella ea, et al. collaboration and entanglement: an actor-network theory analysis of team-based intraprofessional care for patients with heart failure. soc sci med 2016;164:108-17. 31. goffman e. frame analysis: an essay on the organization of experience. cambridge, ma: harvard university press; 1974. 32. lindlof t, taylor b. qualitative communication research methods. 2nd ed. walnut creek, ca: sage publications; 2002. 33. willis r. the use of composite narratives to present interview findings. qual res 2018;19:471-80. 34. barker r, cornwell j, gishen f. introducing compassion into the education of health care professionals: can schwartz rounds help? j comp care 2016;3:3. 35. isfahani hm, tourani s, seyedin h. lean management approach in hospitals: a systematic review. int j lean six sigma 2019;10:161-88. 36. burke k. language as symbolic action: essays on life, literature, and method. berkeley, ca: university of california press; 1966. 37. miller em, hill pd. intuition in clinical decision making: differences among practicing nurses. j holist nurs 2018;36:318-29. 38. mehase e. covid-19: what do we know about “long covid”? bmj 2020;370:m2815. doi.org/10.1136/bmj.m2815 [page 94] [qualitative research in medicine & healthcare 2021; 5:9977] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2018; 2:7817] [page iii] as i welcome you to another issue of qualitative research in medicine and healthcare (qrmh), i am truly grateful to the authors, the dedicated reviewers, our tireless managing editor, francesca baccino and, most especially, to our growing readership, for supporting this journal and for continuing to raise its profile as a theoretically articulate, methodologically diverse and impactful publication for scholars-practitioners (for the two are rarely separated; as research is inherently a practice). i am pleased to announce that jay baglia, ph.d., associate professor of communication studies at de paul university has accepted my invitation to join our editorial board. dr. baglia, whose research foci are health communication, performance studies and gender studies, is the author of the viagra ad venture: masculinity, media, & the performance of sexual health (2005) and co-editor of communicating pregnancy loss: narrative as a method for change. thus far, qrmh has published diverse scholarship, ranging in topics from reproduction counseling in sub-saharan africa, action research teams in sweden, rural elders in ghana, and the identity challenges of physician burnout and anorexia in young women in the united states (just to name a few) and showcasing a variety of qualitative approaches such as interviews, critical theory, ethnography, grounded theory, narrative analysis, dialogue theory, autoethnography, personal narrative and mixed methods. the six original research articles in this issue continue to demonstrate the versatility, sophistication and rigor of qualitative methodologies in tackling the tensions and complexities present in what elliott mishler1 called the voices of the life-world: the multiply embedded accounts of health care users and providers. in the opening article, the introduction of the medicinal partner in direct-to-consumer advertising: viagra’s contribution to pharmaceutical fetishism and patient-asconsumer discourse in healthcare, applequist’s compelling multimodal health communication study of advertising strategies examines the ideological underpinnings of viagra’s ask your doctor appeals and how the photography in viagra ads combines semiotic resources to recruit both men and women into (a heteronormative) pharmaceutical fetishism. atkinson, gathright, clardy, thrush, and messias’ close lexical analysis of a corpus of accounts by the staff in a medical center in their study perspectives of meaningful work in a high-burnout academic medical center: a discourse analysis problematizes the very discourse of burnout qua psychological condition, demonstrating instead that physicians, nurses and basic scientists find meaning (and are able to communicate how they do so, if we actually study communication carefully as the authors do) in their work in spite of its challenges. similarly, ottewell’s a qualitative study of illness identity: schizophrenia and depression, an analysis of accounts of japanese interviewees diagnosed with depression and schizophrenia, sheds light about how identities in healthcare are negotiable by those who claim them and are so identified, even when the possibilities for doing so seem restricted – as is the case of stigmatizing and isolating psychiatric diagnoses, or, for that matter, limiting and poorly examined classifiers like burnout. ottewell’s argument that illness identity, or one’s selfunderstanding of being both object and subject to one’s own medical diagnosis is not a binary between being well or ill, but rather an ongoing both/and negotiation between normalcy and the social stigma of illness is both astute and highly consequential to psychiatric patients and practitioners. in a qualitative study of urban hospital transitional care, feinglass, wein, teter, schaeffer, and rogers note how interviews are often the best, most efficient, and most meaningful way to shed light on healthcare delivery system change and innovation.2 editor’s introduction mariaelena bartesaghi department of communication, university of south florida, tampa, fl, usa correspondence: mariaelena bartesaghi, department of communication, university of south florida, cis 1040, 4202 e. fowler ave, tampa, 33620 fl, usa tel.: +1.813.974.2145 fax: +1.813.974.6817. e-mail: mbartesaghi@usf.edu received for publication: 9 september 2018. accepted for publication: 10 september 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright m. bartesaghi, 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:iii-iv doi:10.4081/qrmh.2018.7817 qualitative research in medicine & healthcare 2018; volume 2:iii-iv no nco mm er cia l u se on ly indeed, the authors practice interviewing as a way to not only go beyond expected clinical narratives but as efficient collaborative engagement in the very conversations that will affect the improvement that the study is designed to investigate. for what could be more efficient than actually understanding the experiences of those who must make sense of how to go about accomplishing complicated and stressful transitions as part of their workday? in this way qualitative research about healthcare is already transformative of healthcare practices for staff and patients alike: it allows for better practices to emerge from those that are currently experiences as less than ideal. the articles by spence, smith and wong and meluch, further demonstrate the rich explanations that qualitative interviews yield for healthcare theory and effective practice. what is interesting is that both studies deal with social support, and as i see it, reveal that research interviews and focus groups are social support in (methodological) action. in stress and burnout in anesthesia residency: a case study of peer support groups spence and her co-authors return us to the topic of burnout, which has been prominently featured by research journal, as much as medical research and social discourse at large. by way of focus group interviews with medical residents in an anesthesia program– whom the authors tell us is the medical specialty at greatest risk of suicide – the study reveals that the peer support groups in which the residents participate are not what relieves their stress. instead, the key to reducing burnout would be more time with their families and friends. finally, meluch’s above and beyond: an exploratory study of breast cancer patient accounts of healthcare provider information-giving practices and informational support adopts a constructivist grounded theory approach, which holds the researcher accountable in interpreting the data, to advance three consequential insights. the first two are theoretical, for meluch demonstrates that physicians’ clear delivery of information about breast cancer treatment is inextricable from communicating support, therefore allowing patients to feel secure with their treatment plans; the second is that uncertainty is not always a drawback – as it uncertainty theory would have it – for ambiguity can be a source of hope for patients. the last insight is actually a proposal as to how we might conceive of interviewing itself as a form of research as social engagement, if not actual social support. when researchers ask healthcare consumers and staff for experiential accounts they not only entitle interviewees to author their own versions of how things are and should be3 for publication and organizational change, but first of all listen and record these versions, which may have never been attended to before. the active co-creation of healthcare practices in qualitative research is nothing if not supportive and thus constitutive of change as it starts from the premise of listening and paying close attention. references 1. mishler e. research interviewing: context and narrative. cambridge, ma: harvard university press; 1991. 2. feinglass j, wein s, teter c, et al. a qualitative study of urban hospital transitional care. qualit res med healthc 2018;2:94-100. 3. roulston k. reflective interviewing. newbury park: sage; 2011. [page iv] [qualitative research in medicine & healthcare 2018; 2:7817] editorial no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2020; 4:9564] [page 117] it’s long-term, well it’s for life basically: understanding and exploring the burden of immunoglobulin treatment in patients with primary immunodeficiency disorders georgina l jones,1 eva brown hajdukova,2 esmee hanna,3 rosie duncan,4 brendan gough,1 jane hughes,4 debbie hughes,5 fran ashworth,5 johan prevot,6 jose drabwell,6 leire solis,6 nizar mahlaoui,7 anna shrimpton5 on behalf of the international igbot study team 1department of psychology, school of social sciences, leeds beckett university, leeds; 2parexel access consulting, parexel international, london; 3allied health sciences research, de montfort university, leicester; 4school of health and related research, university of sheffield, sheffield; 5clinical immunology and allergy unit, northern general hospital, sheffield teaching hospitals and nhs foundation trust, sheffield; 6international patient organisation for primary immunodeficiencies, rocky bottom, trerieve, downderry, cornwall, united kingdom; 7french national reference center for primary immune deficiencies (ceredih), necker enfants malades university hospital, assistance publique-hôpitaux de paris, paris, france; pediatric immuno-haematology and rheumatology unit, necker enfants malades university hospital, assistance publique-hôpitaux de paris, paris, france abstract this paper describes the burden of receiving immunoglobulin (ig) treatment from the perspective of patients diagnosed with a primary immunodeficiency (pid). thirty semi-structured interviews with patients receiving intravenous (n=21) and subcutaneous immunoglobulin (n=9) therapy, either at home or in hospital were undertaken. underpinned by a phenomenological theoretical framework, and using a qualitative, inductive thematic approach to prioritise patients’ concerns, we identified that ig treatment requires considerable effort by the patient, particularly in relation to the amount of time, organization and planning that is needed. they also face numerous physical, social, relationship, emotional, role functioning, travelling, and financial challenges in their effort to undergo and maintain their infusions and care for their health. some qualitative differences in treatment burden were noted between home and hospital settings which contributed to non-adherence to those regimes. immunoglobulin treatment burden is complex and influenced by therapeutic mode and setting and the personal circumstances of the patient. as choice over treatment method appears to be mainly informed by lifestyle needs, pid patients may benefit from more information about these potential ig lifestyle influences when selecting which form of treatment to take together with their health professional. correspondence: georgina jones, department of psychology, school of social sciences, leeds beckett university, calverley building, city campus, ls1 9he, leeds, uk. tel.: 0113.8125106. e-mail: g.l.jones@leedsbeckett.ac.uk key words: primary immunodeficiency; immunoglobulin treatment; qualitative research; thematic analysis. acknowledgements: we are extremely grateful to all the patients who gave their time to take part in this research and share their experiences of receiving ig treatment. we are also extremely grateful to professor john brazier for his contribution to the development of the study protocol. contributions: glj: principal investigator for the study, wrote the study protocol for funding and ethics applications, co-wrote the interview schedule and assisted with data collection and analysis of the interview data. wrote the paper for publication. ehb: supported analysis of the data and writing of the paper for publication. eh: contributed qualitative expertise to the writing of the paper for publication. rd: co-wrote the interview schedule, assisted with patient recruitment, undertook most of the qualitative interviews and assisted with analysis of the data. she assisted with the writing of the manuscript for publication. bg: contributed qualitative expertise to the methodology and writing of the paper for publication. jh: undertook some of the qualitative interviews and commented critically on the drafts of the manuscript for publication. dh: supported recruitment of the patients to the study and commented critically on the drafts of the manuscript for publication. fa: helped write the study protocol, assisted with recruitment of the patients to the study and contributed clinical expertise to the drafting of the paper for publication. jp: provided patient expertise, commented critically on the interview schedule, protocol and manuscript for publication. ls: provided patient expertise, commented critically on the interview schedule, protocol and manuscript for publication. jd: provided patient expertise, commented critically on the interview schedule, protocol and manuscript for publication. nm: provided clinical expertise, commented critically on the interview schedule, protocol and manuscript for publication. as: helped write the study protocol, assisted with patient recruitment and contributed clinical expertise and interpretation to the drafting of the paper for publication. conflict of interest: eh, dh, fa, bg and as declare that they have no conflict of interest. glj has received a research grant from baxalta us to undertake this work and received financial remuneration to attend two travel meetings to london as part of this study. ebh decares no conflict of interest. ebh is an employee of a contract research organization parexel, but has received no financial rewards to participate in this publication. rd was a paid research associate working on this award and received financial remuneration to attend two travel meetings to london as part of this study. jh was also a paid research associate working on this award. jp and jd have previously received unrestricted grants from baxalta/shire to support ipopi’s coordination work with its national member organisations in the context of the study. they have also received unrestricted grants from baxalta/shire in support of ipopi’s activities, outside the scope of the study. nm has received unrestricted education grants from baxalta france and then shire france to support the research activities of the french national reference center for pid (ceredih). he also received financial remuneration for travel to speak at the shire international symposium in 2017 and an honorarium for speaking at this symposium. conference presentation: the abstract of this paper was presented at the advances in patient reported outcomes: integration and innovation conference, leeds, uk, 13th june 2019 as an oral presentation with interim findings. the abstract has been published in the journal of patient-reported outcomes 2020, 4 (suppl 1):28. funding: this work was supported by baxalta us (now known as takeda) under grant number am000958. received for publication: 16 december 2020. accepted for publication: 7 january 2021. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:117-131 doi:10.4081/qrmh.2020.9564 qualitative research in medicine & healthcare 2020; volume 4:117-131 no nco mm er cia l u se on ly [page 118] [qualitative research in medicine & healthcare 2020; 4:9564] article introduction primary immunodeficiency disorders (pids) consist of a group of rare disorders characterised by an impairment in the development and maturation of the immune system.1 this means that for people affected by pids, parts of their immune system are missing or not working properly leaving them with a reduced or absent natural defence against viruses, bacteria or fungi. the consequences of this immune deficiency are that many people with pids will experience frequent infections which do not resolve as quickly as would be expected with antibiotic treatment and even then, the infections may keep recurring.1,2 these symptoms can be mild e.g. recurrent colds or severe illnesses including pneumonia, skin disorders, arthritis and heart problems to name a few.3 as such, the symptom and disease burden associated with pids often have a significant negative impact upon a patient’s quality of life.4 children and adults can experience frequent absenteeism from school or work, reduced participation in social and sporting activities, as well as a range of psychological symptoms in response to living and coping with their condition.2 immunoglobulin (ig) treatment is the main therapy for most patients with pid and it is typically administered either intravenously (directly into a vein) or subcutaneously (directly under the skin). whilst it is generally accepted that this treatment can dramatically improve quality of life,1,5 it may also be associated with a substantial treatment burden i.e. work and effort for the patient. for example, intravenous ig treatment (ivig) is typically administered in hospital (although it can also be given at home in some circumstances). it is usually infused every 3 weeks but can range from 2 to 4 weeks lasting approximately 2-4 hours per visit. the precise length of infusion however, will be dependent on dose and tolerance of the individual. side effects include headache, feeling hot, nausea, diarrhoea, rash, back pain, rarely hypotension. extremely rare and serious side effects such as allergic reactions, kidney problems or blood clots. subcutaneous immunoglobulin (scig) infusions are given by slowly injecting immunoglobulin into fatty tissue just underneath the skin. scig can be given at home, using a mechanical infusion pump (spring loaded, or battery powered) or by rapid push (a manual method that does not require a pump, infusion is pushed by hand through a syringe). the use of the latter method has been increasing over time. common side effects to scig include site reactions such as redness, swelling and itching which are usually mild and go away over a day or two. subcutaneous ig treatment (scig) is typically administered 1-3 times per week in the home but can be administered in the hospital depending on patients’ individual needs, but this is generally considered the exception rather than the rule.6 the ‘work of being a patient’ is referred to as burden of treatment – everything the patient needs to do to treat and manage their illness, for example undergoing tests and investigations, visiting doctors, adhering to treatment regimens and making lifestyle changes.7 burden of treatment is a concept independent of the disease burden and can be defined as the consequences of receiving treatment (these may be medication, therapies or other interventions).8-10 it is an important concept because it may negatively affect adherence to treatment, quality of life, disease management and health care outcomes such as hospitalisations and survival.11,12 whilst there are numerous studies which have tried to measure the quality of life of patients with a pid,1,5,13-22 less attention has focused upon the burden of ig treatment. a recent systematic review which synthesised the evidence regarding the potential burden of ig treatment found that overall, pid patients reported little ig treatment burden and appeared satisfied with ivig and scig therapy.23 the patients’ preference appeared to be the delivery of the ig treatment in the patient’s home and scig was preferred after switching from ivig therapy. however, most studies had adopted a quantitative approach using questionnaires and there was a lack of qualitative research which, when applied in a health service setting, has the potential to gain a richer and deeper insight into the patient’s lived experience with an illness or treatment – particularly if the condition is chronic in nature.24 for this reason, the lack of qualitative research in this area was considered an important gap in the literature. one recent mixed-method study undertook a qualitative exploration of facilitated subcutaneous immunoglobulin (fscig) to explore treatment burden and analysed patient’s responses to open-ended questions using a thematic analysis. however, the study included patients with both a primary and secondary immunodeficiency receiving fscig, and unfortunately did not report the findings separately for these different patient groups. nevertheless, these patients described experiencing some immediate post treatment symptoms such as fatigue, and difficulties using the infusion equipment. but, overall low treatment burden was reported due to the time-saving nature of the treatment and overall improvements to health and well-being that occurred, thus outweighing any negative aspects associated with the treatment.25 aims therefore, the aims of this paper are to describe the results of a qualitative, cross-sectional study carried out to explore in-depth the burden of treatment i.e. the ‘work of being a patient’, for patients diagnosed with a pid and undergoing ig treatment. to the best of our knowledge, this is the first study which has solely sought to provide a rich insight into the potential burden of ig treatment for this patient group. as the aim was to understand the patient’s lived experience of ig treatment burden, we used a phenomenological theoretical approach to guide the interpretation of the data. no nco mm er cia l u se on ly materials and methods study design in order to gain an in-depth understanding of the burden of ig treatment for patients with a pid we adopted a qualitative methodology. we conducted thirty semi-structured interviews with patients receiving intravenous (n=21) and subcutaneous immunoglobulin (n=9) therapy, either at home or in hospital and we approached patients attending the clinical immunology and allergy unit (ciau) at a hospital in yorkshire, uk between march 2015 to october 2015 to participate in the study. ethics approval for our study was granted from the nres committee yorkshire and the humber – bradford leeds on 31st october 2014. the rec reference was 14/yh/1247. participant selection our inclusion criteria were that patients aged 16 years and older, who had been diagnosed with a pid and were undergoing ig treatment (either sc, iv at home or in hospital). we excluded patients if they were receiving ig treatment for a secondary immunodeficiency e.g. secondary to lymphoproliferative disease or following treatment with immunosuppression or if their medical condition meant that they were unable to undertake an interview. participant recruitment our members of the clinical care team (fa, as and dh) identified patients from the pid patient database held at the clinical immunology and allergy unit. they posted the patient information sheets and a consent form to potential participants with a pre-paid addressed envelope to return to the clinic if they were interested in taking part. the clinic team then passed onto the researcher the details of those who had returned the completed consent form. we asked patients whether they had received the posted information when they attended for appointments. we did not provide incentives to patients to participate in the study, but we did reimburse their travel and/or parking costs. our researchers (rd or jh) then visited the patient in the hospital on their infusion date if they were hospital based or at home to undertake the interviews. interview guide development we developed a semi-structured interview schedule to help researchers guide the conversation and keep respondents on topic as well as to encourage two-way communication. our semi-structured interview schedule also provided an opportunity for the interviewers to capture not only the answers to questions, but also learn about the reasons behind the answers, as well as allowing respondents time to open up about sensitive issues. we initially generated the questions for the interview schedule following i) a meeting with some members of the team which involved academic, clinical and patient advocates, and ii) by the emerging results of a systematic review. some members of our team were undertaking this in parallel to the qualitative study, which had started to identify the areas of ig treatment burden for patients with a pid from the international literature.24 our initial schedule was then circulated to the wider team for final internal peer review and feedback following which minor amendments were made. data collection process we used a purposive sampling method whereby patients were approached for participation in the study to ensure maximum diversity within the sample, to reflect gender, a range of age groups, a variety of pid conditions, length from diagnosis of pid, length of time on treatment and types and modes of treatment (i.e. infusing at home or hospital). we anticipated that interviews with 25-30 patients may be needed to reach data saturation, although, we agreed that recruitment would continue until thematic saturation was achieved. in broad terms, saturation is used in qualitative research as a standard for discontinuing data collection and/or analysis. saturation guides acceptance across a range of approaches to qualitative research and is often proposed as an essential methodological element within such work. failure to reach saturation has an impact on the quality of the research conducted and it is considered to be the gold standard by which purposive sample sizes are determined in health science research.26 saturation is commonly described as a rule of qualitative research, and it features in a number of generic quality criteria for qualitative methods. the saturation model used in this study is aligned with the data analysis approach as it is focused on the identification of new themes. more specifically, it is based on the number of such themes rather than the completeness of existing theoretical categories. this approach is termed inductive thematic saturation and can be described as extent to which ‘new’ codes or themes are identified within the data, and/or the extent to which new theoretical insights are gained from the data via this process.26 it has been established in the qualitative methods literature that saturation can be reached with sample size as small as 12 participants.26 however, in our study saturation was reached by the 30th interview as it was agreed by the data analysts that the inclusion of additional study participants did not provide any substantially new or previously unrecognized issues or concepts. our data analyst team members carefully monitored the point when saturation was achieved throughout the qualitative data analyses by populating a tabular summary known as a saturation grid. two of our researchers undertook the interviews (rd and jh). rd is a psychologist and jh is an experienced health service researcher. they had both received training in qualitative research methodology. patients receiving [qualitative research in medicine & healthcare 2020; 4:9564] [page 119] article no nco mm er cia l u se on ly their treatment in hospital were offered the option of being seen at home if they preferred. considerable efforts were undertaken by us to establish the research’s trustworthiness as defined by lincoln and guba.27 for example, we have presented rich quotes to support the themes derived in order to support findings in other contexts (transferability). in addition, we kept a detailed audit trail of the data generated and used as part of the study (e.g. the interview transcripts, audio recordings and coding framework and system) which several members of our research team reviewed (dependability). it could be argued that the confirmability (objectivity) of the research findings may be compromised as the funder of the research is a manufacturer of ig products. however, the funder of our research did not have any involvement in the data collection and analysis process and the transcriptions and audio recordings were not shared with these team members. the members of our study team that were specifically involved in the data collection and analysis (gj, rd, jh and eh) were from academic institutions and were not responsible for the clinical treatment and management and/or personal care of any of the patients that took part. we recorded the interviews using the olympus ds700 digital voice recorder and transcribed these verbatim (names and identifiable information were not included in the transcripts). an independent transcriber (not part of the study team) undertook the transcriptions. members of our research team checked the quality of these and assisted the transcriber where clarification was needed (e.g. the sound was too quiet, and/or unfamiliar clinical words were used). we uploaded the transcripts into nvivo version 10 for data management and analysis. data analysis qualitative data analysis is a broad term encompassing different analytical approaches with the aim of providing contextual description and interpretation of social phenomenon.28 qualitative content analysis (qca) and thematic analysis (ta) are both classified under the qualitative descriptive design and are widely used by qualitative researchers. ta are similar to qca in terms of philosophical backgrounds, immersion in data, attention to both description and interpretation of data analysis, consideration of context during data analysis, and cutting across data for seeking themes. as a point of difference, within ta, a theme is considered to be latent content, but qca researchers are free to decide between the level of data analysis when developing the category or the theme. nevertheless, to develop a theme in both of these approaches, iterative or forward-backward movements and comparison of code clusters in relation to the whole data are required.28,29 researchers using qca may prefer to work with simplicities and overt data by going through a large amount of text to obtain easy-achieved classifications and manifest contents to develop categories. on the other hand, those using ta require an exhaustive and non-stop process of abstraction and in-depth analysis from the beginning to reach the theme.28 it is believed that high-quality qualitative research is marked by a thick description, and rich complexity of findings rather than deductive precision. the complexity and aesthetic aspects of the theme can motivate readers to reflect on data and relate the findings to their own personal perspectives. analysing data qualitatively and also quantifying data are possible in qca, but in ta a purely qualitative account of data is utilized.29 based on the description above, we adopted an inductive [data-driven] thematic analysis approach to prioritise patient accounts/concerns and identify the key concepts and themes. we also selected the ta approach because it is likely to enable for production of more trustworthy and insightful findings by providing a rich and detailed, yet complex account of the patient data.28 friese reports that using qualitative software to analyse data does not diminish the quality of the qualitative research nor does it simplify the whole process of doing qualitative research. when used correctly, it can actually ease the data management and data analysis processes and facilitate analytic rigor.30 as nvivo provides a valuable tool for analysing the interviews thematically, nvivo version 10 was used for both effective data management and analysis. however, it should be noted that nvivo software can only help the researcher to manage, explore and find patterns in data but it cannot replace the analytical expertise. in the data-driven thematic analysis approach adopted in this study, the categories (codes) were selected based on a detailed analysis of all data. this approach was particularly suitable as the goal was to make an in-depth exploration of the data. coding of the data into the categories of analysis required the execution of an explicit set of recording instructions about the rules for coding the data into categories. this process involved more than one judge as the process of triangulation common in qualitative research is designed to enhance the quality of and confidence in the analysis.28 more specifically, four transcripts were read independently by two researchers (rd and gj) to produce an initial coding framework. a meeting was held to discuss and agree the modifications to the framework. one researcher (rd) then went through the other 26 transcripts and coded using this framework, also adding new codes as they arose. units of text that clustered together were then grouped into analytic categories themes. it is important to note that, if appropriate, the same unit of text was included in more than one category. the data were then systematically revisited to ensure that a named theme had all data relevant to support the topic included. given the under-researched nature of the topic, and specifically of the presentation of the voices of those undergoing ig therapy, we have chosen to include rich personal testimony in the form of quotations within the [page 120] [qualitative research in medicine & healthcare 2020; 4:9564] article no nco mm er cia l u se on ly results section in order to ensure that the voices of a group we rarely hear from, are in this context, heard. results we sent fifty-two pid patients a participant information sheet and consent form, of whom 35 (68%) consented to take part in the study. in total, we conducted 30 semistructured interviews either in patient’s homes or at the ciau between march 2015 and october 2015. we stopped interviewing at this point, because data saturation was reached and therefore the remaining five patients were not interviewed. we present the clinical characteristics of the patient sample in table 1 and a summary of their demographics in table 2. burden of ig treatment themes in the effort to undergo and maintain ig infusions and care for their health, we generated eight themes to describe patients’ experiences of treatment: i) time burden; ii) treatment consequences; iii) impact on social interactions and relationships; iv) treatment environment; v) affects emotional well-being; vi) travel; vii) role functioning; and viii) financial consequences. for each patient quote we report the patient’s unique study number = idx, the mode and place of treatment = iv/sc, home/hospital, and their gender=m/f. i) time burden in this theme, we describe how ig treatment negatively impacted upon patients’ time and was the main burden of ig treatment described by patients. embedded within this theme were three subthemes including: i) it takes up too much time; ii) time management planning and organising routines; and ii) inconvenience/arranging timetables around others. it takes up too much time a considerable amount of time and commitment was required in order to undergo this treatment regardless of the mode of ig therapy and location (home or hospital). the amount of time varied by mode and location of ig treatment administration. generally, patients described having to take at least a couple of hours to a day every few weeks to receive treatment. for people taking scig, treatment was administered more regularly than for people taking ivig treatment. for those on the highest dose of scig this meant infusing twice a week. as well as the weekly time burden, many of the patients had been infusing over a number of years which exacerbated the time burden: “i think it’s just because i’ve been doing it for like 32/33 years, and that’s quite a big commitment isn’t it, so that for me at times, i just get every three weeks thinking ‘argh here we go again’, and i really wish i could have like a break, and not have to do it this time, but i know i can’t, so i do.” (id24 iv home/ m). in addition, some patients felt that scig home therapy was preferable to hospital treatment as it didn’t take up as much time, as one participant described: [qualitative research in medicine & healthcare 2020; 4:9564] [page 121] article table 1. clinical characteristics of the patient sample. patient characteristics n (%) mean age: 52.9 years (sd: 17.5, range: 27-92 years). gender: male 13 (43.3) female 17 (56.7) treatment mode: ivig home 5 (16.7) ivig hospital 16 (53.3) scig home 8 (26.7) scig hospital 1 (3.3) diagnosis: common variable immune deficiency 20 (66.6) specific antibody deficiency 3 (10) undefined antibody deficiency 2 (6.6) hypogammaglobulinemia 2 (6.6) x-linked agammaglobulinemia 1 (3.3) selective iga deficiency* 1 (3.3) cd19 deficiency 1 (3.3) duration of treatment: <1 year 3 (10) 1-5 years 10 (33.3) 6-10 years 5 (16.7) >10 years 12 (40) *nb: whilst the diagnosis of selective iga deficiency is not an indication for immunoglobulin replacement therapy per se, this patient had recurrent sinus and ear infection with end organ damage and chronic rhinosinusitis/conjunctivitis. a few patients with isolated iga deficiency behave like panhypogammaglobulinaemia cases (i.e. more severe antibody deficiency’) and require immunoglobulin. therefore, the multidisciplinary team at the ciau recommended that the patient start on immunoglobulin replacement therapy and hence they were included in this study. no nco mm er cia l u se on ly “it’s took a lot less time, not having to go to hospital. you haven’t got to waste a day, or waste half a day in the hospital, wasting doctor and nurses time... but now i just go to work, come home one day, have my tea, and then start this treatment straight afterwards.” (id35, iv home/m) the way in which time was experienced in terms of ‘waiting’ or ‘wasting time’ in the hospital setting is in the quote above, therefore juxtaposed against the relative freedom and lack of constraints felt when the treatment was at home, ‘in their own time’. time management – planning and organising routines generally, other issues related to time were about the need to plan and organise their own time effectively which required considerable effort on behalf of the patient. patients’ often described having to keep to a strict routine to manage their treatment and frequently plan ahead, regardless of what mode of administration they were receiving: “so i preparei’ve got this nice little table that i use, and it’s easy to sterile and everything. i get my delivery every three months. i make packs up. [page 122] [qualitative research in medicine & healthcare 2020; 4:9564] article table 2. summary of the study participants demographics. interview number participant id male or female age at time of interview treatment at home iv or sc or in hospital 1 id01 m 42 hospital iv 2 id02 m 27 hospital iv 3 id03 f 55 home sc 4 id04 m 52 hospital iv 5 id06 m 70 hospital iv 6 id09 m 77 hospital iv 7 id11 m 36 hospital iv 8 id12 m 34 hospital iv 9 id13 m 29 home iv 10 id14 f 58 hospital iv 11 id15 f 57 hospital iv 12 id18 m 92 hospital sc 13 id19 f 80 hospital iv 14 id20 f 83 hospital iv 15 id22 f 83 hospital iv 16 id23 f 62 hospital iv 17 id24 m 47 home iv 18 id28 f 43 home iv 19 id29 f 52 home sc 20 id33 f 32 home sc 21 id35 m 52 home iv 22 id36 f 54 home sc 23 id39 f 43 home sc 24 id40 f 53 home sc 25 id41 f 50 home sc 26 id43 f 51 home iv 27 id46 m 41 hospital iv 28 id47 f 67 hospital iv 29 id49 f 33 home sc 30 id51 m 33 hospital iv no nco mm er cia l u se on ly so everything i need for that week, so i make me 12 packs up ready.” (id 36 sc home/f). for some, their routines involved their partners and family members and treatment was woven into the structure and routines of their everyday lives, including fitting around meals and other activities: “so like today he’s in manchester. so as long as he doesn’t get stuck in traffic, half an hour before he’s due home, he’ll ring and say ‘i’ll be home in half an hour, take your treatment out the fridge’. by the time he’s come in and you know we’ve had a cup of tea, it’s about room temperature. connect it up, and then what i do while it’s in my tummy, i pop the machines in a handbag, put it over my shoulder and i can still do tea“ (id33 sc home/f). emotionally, some participants found that the lack of flexibility concerning when they had their ig treatment got them down at times. this was regardless of whether people were having ivig or scig treatment and the location they were having the treatment. for example, one participant explained: “i think i’ve got to that point where i know i’ve got to have it, and i can’t escape it. whereas i’ve tried before, i know i can’t now, i think i’ve come to terms with it” (id12 iv hospital/m). another participant felt that receiving ig treatment in hospital was preferable given the additional pressure of having to keep their home environment ready and suitable for the treatment: “it’s easier if you know you’re coming to hospital, you know you’re going to have half a day. you just turn up, you sit, you’re done, you go home. you don’t have to worry about it. whereas at home you’re obviously, you’re in your home environment, various things come up. you’ve obviously got to try and keep it consistent, you know, infusion day, you know make sure obviously your products out the fridge, make sure all your supplies are there, it’s just more to think about. for me, this is easier” (id51, iv hospital/m). inconvenience/arranging timetables around others those patients receiving scig at home who rely on an infusion partner also described the difficulty of fitting their scig at home in with the other person’s schedule and having to rely upon others to help facilitate treatment, because as one participant reported: “you can’t infuse while you’re on your own. so, what we do is we just sort of work it round [husbands name] work timetable” (id33, scig home f). another participant said: “i childmind for my youngest daughter monday, tuesday, wednesday evenings only for an hour. and it’s not the treatment’s fault. if transport is late, i don’t get home on time to go and childmind. so now they say, ‘oh is it your treatment week mum?’ and i say, ‘yes it’s my treatment week” (id23 iv hospital/f). therefore, some participants, and their families were having to alter plans and make allowances for the disruption (or potential) disruption that treatment may bring. sometimes this specifically related to the act of treatment itself, but also the experience of accessing the hospital and specifically the need for hospital organized transport which created knock on effects or inconveniences in their own as well as their family’s lives. treatment consequences this theme describes the ways that undergoing ig treatment impacted upon the physical health of patients. a wide range of experiences with the medication was expressed by over half of the patients. within this theme were four key subthemes including: i) impact upon skin, ii) side effects, and iii) tiredness and fatigue. impact on skin many of these skin-related impacts arose from the use of needles. in this respect, one female on subcutaneous treatment shared that: “my veins aren’t very good, and they had become scarred and it was getting harder and harder to get cannula’s in” (id39 sc home/f). some patients reported that the treatment itself was uncomfortable – whereas others described more specific side effects such as sore sites from the infusion, bruising, swelling and tightness. a couple of participants described not liking the look of their infusion site due to the swelling from treatment. some patients who had been undergoing ig treatment for a long time described having scarring on their veins: “i get everything prepared and i do it, and it does help, visualising it in that way. i hate afterwards when i’ve finished, the site area is really sore, it’s swollen and because i’ve got a scar from my belly button down” (id 36 sc home/f). side effects some, although not all, experienced other side effects or what they described as a ‘reaction’ to the medication which required additional steroid and/or antihistamine injections, for example fainting, skin reactions (itching, rashes, boils) and an allergic reaction: “red spots, well not spots, but boils everywhere. small boils everywhere. all my body i feel to scratch my body. and at the time, i was already [qualitative research in medicine & healthcare 2020; 4:9564] [page 123] article no nco mm er cia l u se on ly out, so i ran back here. they gave me a piriton, to sit down and relax and then it disappeared” (id 46 iv hospital/m). not all reactions were in terms of welts or itching, some reported temperature issues after finishing treatment and the need to try and remedy this before departing from treatment, “for a period of time, i did suffer really bad with shivers. when i’d finished my treatment, i would literally be like dithering, and i’d be sat in the car for a good 20 minutes/ half an hour, with the engine on and the heater blowing. i mentioned it to the nurses, and they were a bit concerned because they thought it could be an early stage of a reaction” (id01 iv hospital/m). side effects were therefore experienced in different ways by patients, but the concern about it being a problematic reaction to the treatment itself was common within these experiences. tiredness and fatigue many patients also described feeling tired and/or lethargic immediately after the treatment. one person described feeling so tired after treatment that they could not help but sleep for a number of hours post treatment. fatigue was therefore for some an unpleasant side effect of treatment: “i don’t like, i don’t like that feeling that i know in about half an hour to an hour’s time, i’ve got to go to sleep. and i think when your body does that and you haven’t got a choice, it isn’t a nice feeling.” (id 36 sc home/f). overall, patients described feeling tired regardless of their treatment mode. however, for a couple of patients the changes in energy levels appeared less of a problem with scig treatment compared with iv. impact on social interactions and relationships undergoing ig treatment impacted upon the social life and personal relationships of many of the patients and was another core theme generated from the analysis. the ways this was experienced is described under three sub-themes including i) impact upon holidays and travel, ii) missing out on social activities, and iii) affecting family relationships. impact on holidays/travelling having to take treatment regularly and take this time out meant re-arranging leisure or social activities such as going on holiday. in addition, as ig treatment should be taken every few weeks, patients frequently talked of having to plan their treatment around holidays: “if you went away for three weeks, you’d be ok, but i think if it was any longer than that, so i don’t think i can go on a round the world cruise without making some special arrangements” (id06 iv hospital/m). time was therefore seen as being constrained by the regularity of treatment and the perceived ‘maximum’ time that patients could be away for on holiday before needing to make additional provisions to ensure they were able to access treatment in a different way or place. missing out on social activities some described the ig routines and disruption as being frustrating and getting them down because they missed out on other social activities they would prefer to do: “i suppose on the back of that, the other impact it had is things like social life and feeling normal alongside your friends, because i’d go into hospital once a week, once a fortnight, and probably spend 2 or 3 days recovering from that, just getting to feel well enough again” (id24 iv home/m). however, some patients did say the treatment itself did not interfere with their social life, but that they may have to adapt the type of holidays or activities they did in order to accommodate treatment. affecting family relationships tensions between family members developed, typically because family members tried to ensure that their loved ones continued taking their ig treatment: “sometimes it frustrates me, and other times i just get on with it and do it. it does cause a lot of arguments… if i forget, he’s (partner) like ‘you need to do you treatment!” (id49, sc home/f). others felt that treatment impacted on their familial relationships as it caused their family members to worry about them more than they might have done had the patient not been receiving ig treatment: “because their dad died when they were quite young, they’ve always been really worried then if i was poorly, so then that was another dimension that was particularly hard, because i would try not to let them know so they didn’t worry, and you know, that sort of thing” (id41 sc home/f). treatment environment the place where patients had their ig treatment added to the burden, particularly for patients on scig at home. the burden of home treatment related to self-care activi[page 124] [qualitative research in medicine & healthcare 2020; 4:9564] article no nco mm er cia l u se on ly ties such as the effort of finding a suitable place to store the items needed for treatment as well as keeping the treatment area sterile and clean. the reasons for this was explained by one woman on scig who said: “because you can’t put your bottles in the same fridge as a normal fridge, as your food. so, i have a separate fridge, so that’s very good (id40 sc home/f). these specific requirements may therefore be a burden for some, in terms of having the space and resources to have an additional fridge or space they could keep and make sterile for their home treatment. some of the participants taking home therapy reported missing the social contact provided by going into clinic: “i used to go a day a week into hospital and then eventually i was on home therapy and that were fantastic. i do miss, miss them though. i said to [name deleted] because i used to go in one day a week, and you get so looked after, and because you’re chatting to other patients and other people, and you’re watching all the people, and when you go on home therapy you do lose that” (id 36 sc home/f). emotional burden there appeared to be a psychological burden associated with undergoing ig treatment which this theme describes. it has four sub-themes including: i) feeling powerless and depressed, ii) lack of flexibility, iii) fear about self-injecting and using blood products, and iv) life revolves around the treatment. feeling powerless and depressed emotions ranged from feeling apprehensive about the treatment to feeling worried and depressed, “when it was coming around to treatment, it did used to depress me like because i know that when i get it i’m going to be here for like 5 hours or something like that, and it’s tiring, sat in hospitals” (id12 iv hospital/m): others noted feeling powerless in the face of the treatment they were undergoing and the challenges of managing that treatment with work and other commitments: “because it was depressing me that much, you know i need to come all time, so i just kept, and i were working as well. i had to keep having days off work and stuff like that, and it was getting me right down like. so, i just thought ‘stuff it’, i weren’t bothered, and i probably went a few months, i’ve done it a few times you know” (id12 iv hospital/m). “… it takes out a day and a half of your week, and it has an impact then on lots of things. if you think of your week, if you missed out on 36 hours of your week, i think you’d be, it’s hard to, something has to give doesn’t it, in that way. sometimes i can get a bit, a bit miffed about it” (id36 sc home/f). fear about self-injecting/using blood products a number of people discussed having a dislike of needles and finding the injection and infusion process unpleasant both to go through and look at. one patient, despite having had ig treatment for a while, described that he: “… can’t get used to it no, never. i can’t look at it, you know when they’re putting it in, i can’t look at it at all” (id12 iv hospital/m). another male participant undergoing ivig treatment at home recalled the amount of time it took for him to get used to the idea of self-injecting: “i said ‘no chance, i’m not doing that’. i won’t stick a needlei can’t look at people stick needles in me. [nurse], she persuaded me to have a go at doing it, which we did. it took 3 or 4 months, maybe longer.” (id35 iv home/m). a couple of patients voiced concerns about how the product is made and that there might be a risk that they could pick up an illness. this particularly related to the fact that ig treatment is a blood product and so worries about contamination and getting an illness such as hiv or aids were expressed, although this was generally accepted as a risk that was worth taking considering the benefits of the treatment. however, this in itself led to worries and anxieties about the possibility of the treatment supplies running out and/or the possibility of switching treatments: “you know to a new patient, they are going to refuse it, because people they don’t want a medicine that comes from blood, someone else. people are afraid… yes, from someone else, you know like aids and things like that. so, you’re shocked you know, oh no, no, no, this situation, i don’t want it. but then you decide to take it because there are no other options” (id 46 iv hospital/m). dependence/life revolves around treatment overall, most participants interviewed reported accepting the treatment as it made them feel better and being grateful that they had access to this treatment. however, there was a sense of powerlessness and lack of control over their treatment regimen. the fact that treatment was ongoing was viewed as being an emotional challenge that patients had to accept and manage: “i thought it was a quick-fix thing. obviously, what i didn’t hear, which i’ve now got the grip of, [qualitative research in medicine & healthcare 2020; 4:9564] [page 125] article no nco mm er cia l u se on ly it has been explained to me, that of course, it isn’t is it? it’s long-term, well it’s for life basically” (id04 iv hospital/m). “i have my moments, if i’m honest, when i think what would really happen if i stopped taking it, because it’s still even though it’s a million times better, there are still times where i just think i wish i didn’t have to do this” (id 02 iv hospital/ m). those going to hospital felt like they had less control over when they took their treatment. a lot of this feeling of powerlessness and lack of control over their treatment related to the inflexibility of when they could take the treatment and also their dependence upon this to stay well for the rest of their lives. some participants expressed a feeling of acceptance that they would need ig treatment forever and this would never change. this feeling of lack of control, was also compounded by the need to be extra vigilant during the infusion sessions for any reactions when receiving this medication. travel it was evident that the patients in our study had to invest considerable effort in order to have their ig therapy. another aspect of this related to travelling to clinic appointments, which this theme and its subtheme i) logistical factors, relates too especially for those receiving ig treatment in hospital. this was often described as a burden and inconvenient: “i phoned them and said ‘look, i’ve been driving around for 20 minutes, and i cannot find parking anywhere’. i said ‘i’ve tried the road, i’ve tried inside. so if i don’t actually turn up to this appointment, you know it’s not lack of trying” (id 47 iv hospital/f). logistical factors logistical factors such as problems finding parking, travelling long distances, having to rely on others for transport or using public transport contributed to the treatment burden. not having to travel for treatment was one of the reasons cited for preferring home ig therapy compared to hospital treatment because, as one woman on ivig treatment at hospital said: “you think ‘i’ve got to put a whole day aside just for this…it’s 25 miles” (id23 iv hospital/f). similarly, another woman on the same treatment described having to set off really early for their treatment: “we had to be up for 6 o’ clock this morning. well, ready for 6am” (id20 iv hospital/f), and a male participant shared the challenges of getting to the hospital to undergo his ivig treatment which involved: “now, i’m catching like three buses to get here and it’s taking a lot longer” (id12 iv hospital/m). role functioning this theme describes the different ways that the participants role functioning was negatively affected by the ig treatment. role functioning refers to an individual’s ability to exercise their day to day duties. this theme had two sub themes including i) looking after family, and ii) impact on work/education/school. looking after family some participants discussed treatment disrupting their ability to carry out and fulfil their roles in life as they would like, this could be either as a student, employee or carer/parent: “and i’ve got a daughter who’s 17 now. i mean she was a lot younger then and when you’re in hospital, you’re thinking how they are at home. you know, x [husband] was working all the time and x [daughter] had to go between different grandparents and things” (id40 sc home/f). “p: because it were depressing me that much, you know i need to come all time so i just kept, and i were working as well. i had to keep having days off work and stuff like that, and it was getting me right down like. so i just thought ‘stuff it’, i weren’t bothered, and i probably went a few months, i’ve done it a few times you know. i: stop taking it? p: it’s got me down that much like, and because when i start getting like that, that has an effect at home, you know what i mean with kids and everything and our lass. so i just stopped going. but then i started to like feel drained in myself and everything and get more chest infections and stuff. anyway, i’ve always ended up coming back and that so (id12 iv hospital/m).” impact on work/education/school the experiences of stopping work, taking time off work, adjusting working hours for appointments and treatment varied across participants depending on age, type of work/study and their employer but sometimes this could have had long-lasting effects on their lives where they felt unable to fulfil their life time goals: “well it was difficult because first being diagnosed and going into you can imagine like the critical years in your education, so like 15/16, going on to 17, and trying to do gcse’s and other things when i’d had periods of time for the two or three years before that out of school for investigation purposes. that had quite a massive impact really” (id24 iv home/m). [page 126] [qualitative research in medicine & healthcare 2020; 4:9564] article no nco mm er cia l u se on ly the opportunity to be promoted or advance in careers was therefore seen as being restricted by the need for ig treatment. those on home scig treatment found that they needed to take less time out of work than when having treatment at the hospital and overall that it was less disruptive to the other roles they needed to fulfil, although they often still had to adapt their work lives or their personal lives as partner or spouse to accommodate their treatment, as one male participant on ivig treatment at home shared: “that is my greatest frustration and it frustrates me as well because of like future implications, because i don’t think iit’s going to be a hell of a nightmare for me to progress within a company, and yes that’s about it really” (id13 iv home/m). financial consequences in the uk, the national health service (nhs) covers the direct cost of ig treatment. therefore, it was not surprising that this was the least reported aspect of ig treatment burden for the patients interviewed. however, several indirect costs were identified through the interviews, which are encompassed within this theme and its three sub themes, including travel cost, insurance and loss of earnings. travel was cited as the main indirect cost of treatment for those on ivig hospital treatment depending on the distance travelling and mode of transport, as highlighted by two male participants who explained: “so i virtually got 30 to 40 miles worth of petrol, plus £3.70 to park. so that’s what the cost” (id06 iv hospital/m), and “it is a pain to be fair, parking every time i come. it’s not as bad now, but when i used to have the sub-cut, and i used to come to the hospital, it’s like £5 every week” (id02 iv hospital/m). whilst travelling to hospital was considered expensive, travelling overseas for holidays and work was also hindered due to the inability to get travel insurance, as highlighted in one exemplar quote from a male participant who receives ivig treatment in hospital: “i’ve had opportunities to go over to america, working over there, and i’m like i’ve got to have treatment, and travel insurance and that, they’re not going to cover the cost of this treatment. for me to pay for it, it’s probably really, from a financial standpointit’s just causing me a lot of problems really” (id01 iv hospital/m). the relapsing nature of the condition and the necessity to have more treatment and hospital visits also impacted on work for many of the participants, with some describing how they were forced to leave work or feeling afraid that this may happen, as reported below by one female participant on scig at home and one male participant on ivig in hospital: “at the time, i was very career-minded. i got a really, i got a really good job at the local authority at ————council, and i was quite high up. but then at that time, i was getting worse and worse and worse and i was having time and time off work. and obviously you can’t have, so i was forced to leave my work” (id36 sc home/f). “it does bother me. it does because what they’ll do is they’ll sack me. that’s it, that’s the bottom line. that’s the way they are. it’s cost-cutting isn’t it. i’ve been there so long. i earn the most money of my grade amongst about 8 or 9 of us. if they can see a chance, you’re gone, and that’s what they’ll use to get rid of me. but it’s not my fault, and i’ve tried to explain this to them” (id04 iv hospital/m). the burden of treatment therefore created worries in relation to work and the ability to fulfil employment, and this was a cause for concern in terms of the long-term financial consequences for patients if they were unable to work or had to reduce the number of hours they worked. discussion our study aim was to explore pid patient’s experiences of the burden of ig treatment, including those receiving ivig and scig, either in a home or hospital setting. to the best of our knowledge, this is the first study which has solely sought to explore in-depth the potential burden of ig treatment for this patient group. to do this we adhered to the concept of burden of treatment such that we sought to explore where receiving ig therapy may cause work and effort for the patient. in this study, burden of treatment (bot) was defined as the consequences of receiving treatment (these may be medication, therapies, or other interventions). this concept also entailed the “work of being a patient”—everything the patient needs to do to treat and manage their illness, for example, undergoing tests and investigations, visiting doctors, adhering to treatment regimens, and making lifestyle changes.23 whilst all the patients had experienced improvements in their health-related quality of life as a consequence of ig treatment, they also describe areas of the treatment that are burdensome and impact upon a wide spectrum of life domains. these burdens particularly related to the amount of time, organization and planning that is needed. they also faced numerous physical, social, relationship, emotional, role, travelling, and financial challenges in their effort to undergo and maintain their infusions and care for their health. our findings concurred with the results of the quantitative studies in this area.13-22 we found the biggest burden of ig therapy was in relation to time, with over two thirds of patients reporting this as a treatment burden. overall, the patients had experienced some mild sys [qualitative research in medicine & healthcare 2020; 4:9564] [page 127] article no nco mm er cia l u se on ly temic reactions to the therapy as expected,31 although a couple of patients had reported more extreme reactions to their treatment. immediate systemic reactions with ivig therapy are usually mild but include head and body aches, chills and fever. allergic reactions are uncommon.6 other more serious reactions can include headache, aseptic meningitis, kidney failure, blood clots and haemolytic reactions.32 there is also a risk of more variable blood levels of igg compared to the subcutaneous route of administration. a low trough igg level prior to intravenous infusion can result in patients experiencing symptoms of fatigue, general malaise and increased susceptibility to infection.32 systemic adverse reactions to scig are also rare, however local adverse reactions such as persistent pain, bruising, swelling and erythema are common.31 in our study, there were different descriptions in the reports of treatment burden between the modes of treatment (scig and ivig) and whether people had treatment at home or in hospital. a systematic literature review and a meta-analysis concluded that the efficacy of scig replacement was similar to ivig treatment, however better treatment satisfaction, quality of life, and faster recovery (e.g. reduced time off work) was also observed.33 from the qualitative accounts of treatment that surfaced in our study, scig at home was associated with reduced travel, time and financial burden, greater comfort (both physically and in terms of being in a home environment) and less disruption to social activities. howard et al.14 reported that iv immunoglobulin treatment was burdensome for patients because of issues around scheduling therapy and travel. gardulf et al.19 reported that patients on scig at home reported a significantly increased ability to participate in recreational activities. similarly, daly et al.,13 found that patients undergoing home-based treatment (sandoglobulin) had better life quality index scores than clinic-based patients. perceived benefits included greater convenience, comfort, independence, freedom to travel, flexibility of treatment schedule and a more pleasant treatment atmosphere. home treated patients also reported less disruption of daily activities, waiting time and treatment-associated travel and cost. however, whilst some of these benefits were experienced by the patients in our study, we also found there were areas where scig at home did cause a burden particularly in relation to the treatment environment (e.g. the need to have an infusion partner present during treatment, maintaining a clean and sterile environment in their homes, and lack of social contact that the hospital environment provided). an infusion partner is someone close to the patient (e.g. a relative, a partner or friend) who is prepared to support the patient with their infusions. in the uk, the current consensus is that patients infusing via the subcutaneous route do not require an infusion partner, however decisions are made following an individual assessment. for example, some patients receiving subcutaneous infusions may still require an infusion partner e.g. due to lack of dexterity for using the equipment. if an infusion partner is identified then they are requested to attend a number of ciau competency-based training sessions to enable them to carry out certain aspects of the infusion. these sessions, cover all aspects of the infusion, but focus on their role as the infusion partner. the aim is to have the training programme completed in 4-6 weeks however everyone is assessed individually and trained to meet their individual needs. the actual length of training will depend on the rate of learning. this person has to undergo a number of weeks of training to allow the person to infuse at home rather than in clinic. thus, the level of support varies. in the uk, it is also not routine to actively carry out prehome visits. instead, how and where infusions take place is typically discussed with their healthcare professional and the patient and partner. patients undergoing their ig treatment at the ciau felt that the clinical team took on these considerations and therefore they did not need to worry. it was notable that the staff at the clinic went out of their way to accommodate people for their needs and that overall people had very positive experiences at the clinics. a couple of conceptual models have recently been proposed to describe burden of treatment.9,24 although generated from a sample of patients with complex health conditions and therefore undergoing a variety of different medical treatment regimes, eton et al.24 identified three broad themes; i) the work patients must do to care for their health, ii) problem focused strategies and tools to facilitate the work of self-care and iii) factors that exacerbate perceived treatment burden (i.e., challenges taking medication, emotional problems with family and friends, role and activity limitations, financial challenges, confusion about medical information, systemic obstacles of health care delivery. similarly, sav et al.9 presented four themes on the burden of treatment with chronic disease relating to financial burden, time and travel burden, medication burden and healthcare access burden. in our study, these models were not used as a framework for the analysis because we adopted an inductive, data driven approach. however, our identified themes generally support the previous generic conceptual frameworks on burden of treatment previously mentioned.9,24 one notable difference to sav et al.’s9 findings was that we found concerns around financial issues to be the least burdensome. however, this different finding is likely because sav et al.’s9 research was conducted in australia where the healthcare system is funded differently to the uk. studies that have measured the burden of ig treatment in a non-uk population have also found issues around costs and insurance to be a problem.14 indeed, in the previous chronic condition literature, the healthcare system in which a treatment is given affects the perceived burden of the treatment. [page 128] [qualitative research in medicine & healthcare 2020; 4:9564] article no nco mm er cia l u se on ly another notable difference to sav et al.’s9 findings were the emotional, relationship and social burden themes. although generated from a sample of patients with complex health conditions and therefore undergoing a variety of different medical treatment regimes, eton et al.34 reported that emotional problems with family and friends, role and activity limitations were some of the factors that could exacerbate perceived treatment burden. however, the psychological burden of the treatment was also largely underexplored. also, in relation to the framework proposed by eton et al.,24 we only identified a couple of provider level issues but this may be because we recruited from one unit where the patients had very good relationships with their staff. the patients also didn’t seem to be confused about any aspects of their ig treatment. to our knowledge this study provides the first in-depth qualitative study of patient’s experiences of the burden of both ivig and scig treatment for pid.25 in focusing upon the work and effort that pid patients describe needing to undertake to receive this treatment, there may be some positive experiences of receiving this treatment that have not been reported or described by the patient. however, it is worth stating that despite the burdensome aspects of ig treatment reported in this paper, there was an overwhelming sense of gratitude that ig treatment is available to help manage their chronic condition which would not be possible without it. the sample size is modest but is expected for a qualitative piece of research and data saturation was reached. we recruited all the patients from one hospital in the uk. it may be that there are aspects of treatment burden that were not reported in this population, and patients in other sites or countries may have different experiences. this is particularly relevant in relation to the financial burden associated with ig treatment as all the patients had their ig treatment paid for by the nhs which is free at the point of treatment. the perceived level of burden upon leisure and social activities (in particular, holidays) described by some ivig patients in this study may also be less for those being treated in other parts of the world. local practice is not to switch between ivig and scig products if possible. however, every effort is made to accommodate patients’ holiday arrangements and arrange ivig infusions (for patients on ivig) around these. whilst longer periods of travel has necessitated more planning, this has also been accommodated by liaising with local immunologists in the holiday destinations. for patients on scig home therapy, local practice is that patients can take their product with them, so it should not interfere with holiday arrangements and letters for plane travel are also provided if required. as the patients on ivig therapy described the treatment as causing more burden to their holidays, it would be interesting to explore this further, with the aim of identifying the ways this felt burden could potentially be reduced further in the local setting. our sample of patients included more patients who were undergoing ivig treatment (n = 21) compared to only nine patients who were receiving scig. the difference in sample numbers is because, at the time the study was conducted, the ciau were treating more patients on ivig therapy than scig. in addition, fewer home therapy patients returned the consent forms through the post. more ivig patients were recruited because they were given their consent forms whilst attending for treatment at the clinic. this could mean that there’s a bias towards those on ivig hospital treatment in the results which may have occurred as a result of enhanced trust established while meeting the researchers. although our reflexive thematic analysis illuminated patient perspectives, further research might use other methodologies, such as discourse analysis, to examine how patient accounts are [co] constructed in interview settings, thereby highlighting the interactional nature of interview data, and/or to analyse consultations between health care professionals and patients to explore how patient burden is negotiated in situ.35 the choice of which route to use for ig administration depends upon the personal preference of the patient, ease of intravenous access, tolerability of any previous ig products, and the patient’s lifestyle. it can be reviewed regularly and adjusted throughout the period of treatment as a patient’s circumstances change. to further support patients in this decision-making process and improve patient-centred care plans, it may be beneficial for healthcare providers to share and discuss the potential work and effort for the patient that ig treatment may result in. in turn, this may further help providers to deliver minimally disruptive medicine by tailoring treatment regimens to the realities of the daily lives of patients and relevant patient goals.36 patients are likely to benefit from education to encourage them to acknowledge any felt treatment burden and talking with their health care provider about what can be possibly done to reduce it, which might foster adherence.37 it should also be noted that experts believe increased patient and physician shared decision-making (sdm) can result in better overall longitudinal care but understanding the physician’s role in facilitating sdm is still limited, hence should be further explored.38 most patients and healthcare providers are aware of treatment burden, however the lack of a simple method to measure it in the clinical setting often results in lack of focus on this important aspect of patient centred care. as identified in a previous systematic review, many instruments are available to measure patient treatment burden, however there is no one standardized assessment method. to measure treatment burden, a few generic burden of treatment questionnaires are currently available, but these have been designed to capture treatment burdens across a wide range of chronic illnesses, for example, the patient experience with treatment and self-management questionnaire.34 some of the patient’s perceived ig treatment burdens we identified would be captured in this [qualitative research in medicine & healthcare 2020; 4:9564] [page 129] article no nco mm er cia l u se on ly [page 130] [qualitative research in medicine & healthcare 2020; 4:9564] article measure e.g. role and social activity limitations, however others would not in particular their described accounts of fear and worry about needles, catching another illness from the blood product, and other specific psychological and physical consequences associated with their ig treatment. one of the key differences is that these generic questionnaires ask questions in relation to ‘medications’ but for the ig group, their treatment is infusion based and so some of questions and the phrasing of these are not relevant to this pid cohort of patients. as people live longer with chronic conditions there is an increased need for identification of patients as well as their caregivers burdened by specific treatment in order to engage in approaches to reduce treatment burden effectively. a standard and validated assessment method to measure patients’ with pid and their caregivers’ treatment burden in the clinical setting might not only enhance treatment but also allow for comparison of different approaches to reducing pid treatment burden and foster ongoing evaluation and monitoring of burden across patient populations and time. more importantly, given that the existing generic burden of treatment questionnaires do not appear to capture all of the ig specific treatment-related burdens, we have used the themes identified from this qualitative work to inform the development of a new condition-specific ig burden of treatment measure for this patient group (igbot-35) that is applicable across the different modes of administration and treatment types (ivig and scig).39 this also follows good practice which recommends that data generated from qualitative research with the patient group of interest is used to develop the items in a patient-reported outcome measure to ensure its content validity.40 conclusions in this qualitative study, we have explored the experiences of undergoing life-long ig treatment as described by patients diagnosed with a pid. in doing so, it has provided the first in-depth, rich account of ig treatment burden and has shown that the therapy can impact upon many areas of life – particularly in relation to the amount of time the therapy necessitates for pid patients on ivig and scig treatment. there appear to be some qualitative differences between patient’s accounts and experiences of the burden of ivig treatment compared to scig treatment but larger studies are needed to confirm this. for example, ivig treatment in hospital was associated with more travel burden than scig at home. but scig necessitated more work and effort to keep a sterile and clean environment and thus required more planning and organisation in this regard. choice over treatment should be informed by patient’s clinical and lifestyle needs as well as familiarity with treatment regime. to facilitate this, our advice is that healthcare providers should also discuss with their patients the different ways that ig treatment can be burdensome so the patient’s personal circumstances and preferences can be accommodated. whilst healthcare delivery advocates the use of tools in routine care that can assess quality of life, we also recommend this is supplemented with a standardised treatment burden outcome measure such as the igbot-35 as part of their routine clinical practice as this can further facilitate the monitoring and delivery of more effective and personalised patient-centred care to their pid patients in the future. references 1. espanol t, prevot j, drabwell j, et al. improving current immunoglobulin therapy for patients with primary immunodeficiency: quality of life and views on treatment. patient prefer adherence 2014;8:621-9. 2. mozaffari h, pourpak z, pourseyed s, et al. health-related quality of life in primary immune deficient patients. iran j allergy asthma immunol 2006;5:23-7. 3. pid uk. what are pids? the basics. accessed: 18th february 2021 available from: http://www.piduk.org/whatarepids/ basics 4. ataeinia b, montazeri a, tavakol m, et al. measurement of health-related quality of life in primary antibody-deficient patients. immunol invest 2017;46:329-40. 5. gardulf a, nicolay u. replacement igg therapy and selftherapy at home improve the health-related quality of life in patients with primary antibody deficiencies. curr opin allergy clin immunol 2006;6:434-42. 6. jolles s, orange js, gardulf a, et al. current treatment options with immunoglobulin g for the individualization of care in patients with primary immunodeficiency disease. clin exp immunol 2015;179:146-60. 7. tran vt, montori vm, eton dt, et al. development and description of measurement properties of an instrument to assess treatment burden among patients with multiple chronic conditions. bmc medicine 2012;10:68. 8. may cr, eton dt, boehmer k, et al. rethinking the patient: using burden of treatment theory to understand the changing dynamics of illness. bmc health serv res 2014;14:281. 9. sav a, kendall e, mcmillan ss, et al. 'you say treatment, i say hard work': treatment burden among people with chronic illness and their carers in australia. health soc care community 2013;21:665-74. 10. mair fs, may cr. thinking about the burden of treatment. bmj 2014;349:g6680. 11. brod m, hammer m, christensen t, et al. understanding and assessing the impact of treatment in diabetes: the treatment-related impact measures for diabetes and devices (trim-diabetes and trim-diabetes device). health and quality of life outcomes 2009;7:83. 12. pifferi m, bush a, di cicco m, et al. health-related quality of life and unmet needs in patients with primary ciliary dyskinesia. eur respir j 2010;35:787-94. 13. daly pb, evans jh, kobayashi rh, et al. home-based immunoglobulin infusion therapy: quality of life and patient health perceptions. ann allergy 1991;67:504-10. 14. howard v, greene jm, pahwa s, et al. the health status and quality of life of adults with x-linked agammaglobulinemia. clin immunol 2006;118:201-8. 15. gardulf a, bjorvell h, andersen v, et al. lifelong treatment no nco mm er cia l u se on ly with gammaglobulin for primary antibody deficiencies: the patients' experiences of subcutaneous self-infusions and home therapy. j adv nurs 1995;21:917-27. 16. nicolay u, haag s, eichmann f, et al. measuring treatment satisfaction in patients with primary immunodeficiency diseases receiving lifelong immunoglobulin replacement therapy. qual life res 2005;14:1683-91. 17. gardulf a, nicolay u, math d, et al. children and adults with primary antibody deficiencies gain quality of life by subcutaneous igg self-infusions at home. j allergy clin immunol 2004;114:936-42. 18. jones ca, rojavin m, baggish js. patients with primary immunodeficiency receiving subcutaneous immune globulin hizentra maintain health-related quality of life and treatment satisfaction in a multicentre extension study of efficacy, tolerability and safety. j pharmaceut health serv res 2012;3: 41-7. 19. gardulf a, bjorvell h, gustafson r, et al. the life situations of patients with primary antibody deficiency untreated or treated with subcutaneous gammaglobulin infusions. clin exp immunol 1993;92:200-4. 20. vultaggio a, azzari c, milito c, et al. subcutaneous immunoglobulin replacement therapy in patients with primary immunodeficiency in routine clinical practice: the vispo prospective multicenter study. clin drug investig 2015;35: 179-85. 21. gardulf a, borte m, ochs hd, nicolay u. prognostic factors for health-related quality of life in adults and children with primary antibody deficiencies receiving scig home therapy. clin immunol 2008;126:81-8. 22. beauté j, levy p, millet v, et al. economic evaluation of immunoglobulin replacement in patients with primary antibody deficiencies. clin exp immunol 2010;160:240-5. 23. jones gl, vogt ks, chambers d, et al. what is the burden of immunoglobulin replacement therapy in adult patients with primary immunodeficiencies? a systematic review. front immunol 2018;9:1308. 24. eton dt, ramalho de oliveira d, egginton js, et al. building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. patient relat outcome meas 2012;3:39-49. 25. petersson c, fust r, hagstedt c, et al. "experiences of the burden of treatment"-patient reports of facilitated subcutaneous immunoglobulin treatment in adults with immunodeficiency. j clin nurs 2018;27:4270-8. 26. saunders b, sim j, kingstone t, et al. saturation in qualitative research: exploring its conceptualization and operationalization. quality quantity 2018;52:1893-907. 27. lincoln y, guba e. naturalistic inquiry. newbury park, ca: sage publications; 1985. 28. braun v, clarke v. using thematic analysis in psychology. qual res psychol 2006;3:77-101. 29. vaismoradi m, turunen h, bondas t. content analysis and thematic analysis: implications for conducting a qualitative descriptive study. nurs health sci 2013;15:398-405. 30. friese s. qualitative data analysis with atlas.ti: sage publications limited; 2019. 31. stiehm er. adverse effects of human immunoglobulin therapy. transfus med rev 2013;27:171-8. 32. chapel h, prevot j, gaspar hb, et al. primary immune deficiencies principles of care. front immunol. 2014;5:627. 33. abolhassani h, sadaghiani ms, aghamohammadi a, et al. home-based subcutaneous immunoglobulin versus hospital-based intravenous immunoglobulin in treatment of primary antibody deficiencies: systematic review and meta analysis. j clin immunol 2012;32:1180-92. 34. eton dt, yost kj, lai js, et al. development and validation of the patient experience with treatment and self-management (pets): a patient-reported measure of treatment burden. qual life res 2017;26:489-503. 35. potter j, hepburn a. qualitative interviews in psychology: problems and possibilities. qual res psychol 2005;2:281-307. 36. may c, montori vm, mair fs. we need minimally disruptive medicine. bmj 2009;339:b2803. 37. sheehan oc, leff b, ritchie cs, et al. a systematic literature review of the assessment of treatment burden experienced by patients and their caregivers. bmc geriatr 2019;19:262. 38. lamb cc, wang y, lyytinen k. shared decision making: does a physician's decision-making style affect patient participation in treatment choices for primary immunodeficiency? j eval clin pract 2019;25:1102-10. 39. jones gl, williams k, edmondson-jones m, et al. the development of a new questionnaire to measure the burden of immunoglobulin treatment in patients with primary immunodeficiencies: the igbot-35. patient prefer adherence 2020;14:1567-84 40. guidance for industry patient-reported outcome measures: use in medical product development to support labeling claims. food and drug administration. u.s. department of health and human services; 2009. [qualitative research in medicine & healthcare 2020; 4:9564] [page 131] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2020; 4:8821] [page 31] introduction the uk national institute for clinical excellence1 defines palliative care as the active holistic care of patients with advanced, progressive illness (p. 20). this can include pain and symptom management, and psychological support, with the aim of improving quality of life for patients and their families. whilst palliative care will often include supporting patients at the end of life, some patients may access palliative care earlier in the trajectory of their illness, in conjunction with other treatments. individuals accessing palliative care increasingly wish to be cared for within their communities and with the opportunity to die at home when the time comes.2 in areas where specialist community palliative care or hospice at home teams exist the occurrence of individuals dying out of hospital (84%) far exceeds the national average in the uk (52%).3 however, in rural areas delivery of community care can be challenging as services face higher costs as a result of lower economies of scale, challenging recruitment and retention of specialist staff, difficult geographical areas to service and increased rates of older adults in need of specialist services.4,5 it is perhaps not surprising therefore that evidence from rural areas has previously identified that palliative care patients report less symptom control, a lack of regular access to nurses and a lack of communication with medical professionals in comparison with their urban counterparts.6 other studies have highlighted the need for improved access to social and psychological support for palliative care patients.7 this is particularly evident in rural areas of the uk, where curexploring rural palliative care patients’ experiences of accessing psychosocial support through telehealth: a longitudinal approach rachel j. rahman,1 joseph r. keenan,2 joanne hudson3 1psychology department, aberystwyth university, 2manchester metropolitan university; 3swansea university, uk abstract in this research, we explore the experiences of rural palliative care patients receiving psychosocial support through telehealth. a longitudinal approach considered how experiences vary over time. three patients with a terminal cancer diagnosis were given a laptop to access psychosocial support via telehealth over three months. semi-structured interviews were conducted at monthly intervals. interpretative phenomenological analysis identified four themes: deepening understanding through unburdened and continuous connections; the ever-present paradox of visible and invisible telehealth; insight into the holistic self: from barrier to facilitator; and, the immediate change from unnecessary distraction to mindful engagement. findings challenge previous conclusions regarding the inability of telehealth to support meaningful relationships, and instead provide novel insights to explain why enabling rural palliative care patients to access support from home is supportive for their wellbeing and the quality of healthcare relationships. our conclusions question whether the indirect benefits of telehealth could also offer a valuable way of accessing health services beyond a palliative care setting. correspondence: rachel rahman, psychology department, aberystwyth university, aberystwyth, sy23 3ux, united kingdom e-mail: rjr@aber.ac.uk key words: telehealth, palliative care, interpretative phenomenological analysis, longitudinal experiences. acknowledgements: the authors would like to acknowledge thanks to gudrun jones, hywel dda university health board for her contribution to delivering the psychotherapy sessions as part of this project and to the participants who took part. thanks are also extended to carys stevens, hywel dda uhb for her clinical support in organizing the research. authors’ contributions: rr, jk and jh conception and design; jk data collection, rr analysis and interpretation of data; jh interpretation of data analysis; rr, jk, & jh drafting and revising of manuscript and final approval of submission. funding: this research was funded by the knowledge economy skills scholarships (kess). kess is a pan-wales higher level skills initiative led by bangor university on behalf of the he sector in wales. it is part funded by the welsh government’s european social fund (esf) convergence program for west wales and the valleys. advisory: to note, the data from this article contributes to a separate article (in review) which compares patients’ and health professionals’ perspectives on telehealth. the research questions and mode of analyses are different in the two articles and no common quotations are presented. conflict of interest: the authors declare no potential conflict of interest. received for publication: 13 january 2020. accepted for publication: 11 may 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:31-42 doi:10.4081/qrmh.2020.8821 qualitative research in medicine & healthcare 2020; volume 4:31-42 no nco mm er cia l u se on ly rent models of care have centralized specialist support to urban tertiary centers. telehealth involves the use of telecommunications and virtual technology to deliver elements of healthcare and offers a potentially interesting opportunity to improve access to services and support for rural palliative care patients and their caregivers, without the need for unnecessary travel for either the patient or healthcare professional involved.8 kidd et al.9 conducted a review of telehealth use in palliative care within the uk and identified a variety of applications including videoconferencing to facilitate multidisciplinary team meetings, telephone help lines, electronic patient records and mobile symptom recording. the review concluded that with adequate infrastructure and support, telehealth offered a feasible and practical mode by which to support traditional models of palliative care in rural and remote communities. however, demiris et al.10 state that although telehealth is becoming widely used in other health domains it has yet to be adopted as frequently in the provision of palliative care. their findings suggest that telehealth has the potential to be highly effective in this context given the demonstrable improvements in psychological outcomes seen in other health domains. more recently, a systematic review of the use of telehealth in palliative care, from the perspective of caregivers, agreed that telehealth interventions were feasible and that users were satisfied.11 amongst articles measuring wellbeing outcomes the benefits of telehealth services included improvements in carers’ quality of life, anxiety, depression, stress, and caregiver burden, demonstrating the potential benefits that telehealth connections could offer. however, the authors echoed the concerns of demiris et al.10 regarding the small proportion of telehealth studies conducted in the context of palliative care and highlighted the need to better understand how interventions can support patients during this vulnerable time. telehealth studies conducted with patients themselves using quantitative approaches have demonstrated a wide variety of benefits of telehealth services including patient satisfaction, improved symptom control and a reduction in the use of emergency services,12, 13 increased frequency of contact between patient and professionals,14 improved quality of life, and, decreased anxiety and depression.15, 16 it is clear therefore that the use of telehealth in palliative care can potentially support positive patient outcomes; however, these quantitative studies do not consider why or how telehealth facilitates these outcomes. understanding the experiences of patients, and the features of telehealth that support or challenge positive outcomes is key to improving services and achieving high quality care for rural residents. stern et al.17 conducted a case study of remote monitoring and videoconferencing in palliative care which offered some initial insights into the experience of patients through a combination of quantitative, qualitative and observation methods. findings identified themes around enhanced access to care and usability of the telehealth system. more in-depth qualitative research by roberts et al.18 and johnston et al.8 reports increased patient empowerment though improved opportunities for face to face conversations and involvement in decisions relating to their care. it is possible to see therefore that there are underlying benefits afforded by telehealth technology for rural palliative care patients; however, there continues to be a need for in-depth understanding of how palliative care patients make sense of their experience of using telehealth in rural service delivery over time. a terminal diagnosis can result in changeable symptoms, emotions and challenges. as such, patient engagement and their needs for telehealth services may vary as patients near the end of life. similarly, research exploring acceptability of technology suggests that age and experience are key moderators for technology acceptance.19 thus, giving voice to palliative care patients as they navigate these changes during the progression of their illness is key to better understanding the role that telehealth can play in supporting their needs. it is acknowledged that longitudinal research in the context of palliative care can pose challenges due to sample attrition resulting from mortality, increased ethical constraints, and concerns about over-burdening vulnerable participants.11 consequently, the voice of the palliative care patient can be left unheard and their needs and experiences replaced by the observations or opinions of caregivers and family. this poses its own ethical questions about palliative care patient opportunities to engage in their own service improvements. this study is one of the first articles that takes a longitudinal phenomenological approach with palliative care patients using telehealth and we ask the research question: how do palliative care patients make sense of their experience of using telehealth to access psychological support over a three-month period? materials and methods design we utilized an interpretative phenomenological perspective in order to understand how participants made sense of their experience of using technology to access support over time. interpretative phenomenology provides a method to explore in detail how individuals make sense of their personal and social experiences.20 the ability to follow an individual through the novel experience of accessing their service via telehealth, whilst being able to examine their sense making of their own illness and needs during this time, made this approach particularly relevant to this context. we used semi-structured interviews conducted with each participant at three time points following the introduction of telehealth. these occurred at monthly [page 32] [qualitative research in medicine & healthcare 2020; 4:8821] article no nco mm er cia l u se on ly intervals. semi-structured interviews are considered a strength in interpretative phenomenological research because of their ability to offer flexibility, build rapport and enable the participant to lead the direction of conversation, resulting in richer descriptions and sense making of their experience.20 a longitudinal approach allowed us to better understand how interaction with the technology may change over time. research has indicated that experience of technology can influence engagement and acceptability,19 and as such, we considered the need to allow adequate time for participants to develop experience of using the technology and to understand the change from initial adoption to experience important. however, we also needed to consider the timeframe ethically and practically in light of the palliative care context to not overburden participants and to take account of prognosis. as such, we considered a three-month time period to be in line with previous recommendations for patients to develop a level of experience, with monthly intervals enabling insight into the gradual process of adapting to the technology without intruding on patients too frequently.21 telehealth system and service intervention prior to the research the psychosocial service was only available as a face to face service for patients. they could access the service if they were able to travel to the local general hospital or in cases deemed necessary by the therapist, the therapist would drive to the patient’s home. in this rural location, this could involve a journey of over an hour by car and far longer by infrequent public transport. this therefore limited the number of patients who could realistically access the service and the need to improve accessibility for rural patients was identified by the clinical team. we (the research team) were responsible for sourcing a limited amount of equipment to support the initial set-up of the telehealth service and as such, only individuals who consented to participate in the research were able to access the telehealth service at this time. all other patients were able to continue to access the therapist service as per usual care. the telehealth system used polycom realpresence videoconferencing software. this software was installed on laptop computers which were provided for the duration of the study. the software could be used to access a remote vpn which enabled access to a secure network, ensuring a secure connection between the patient’s home and the health professional located in the general hospital. sessions were run at timings deemed appropriate by the therapist and patients, but typically, were once every week to 10 days (between 8-12 sessions over the 3 months) and consisted of one to one consultations between the patient and an art therapist, that lasted up to one hour, as determined by the health of the patient. the therapist was a registered art psychotherapist with over 20 years of experience but no prior experience of using telehealth to conduct sessions. we (specifically jk) provided technological support and training for both the therapist and patients as required. participants were provided with a basic supply of art materials and were able to show and discuss their drawings on screen during the session. art therapy sessions were used to encourage participants to share their current experiences, explore their feelings towards their terminal diagnosis and consider ways to alleviate or resolve any concerns. reporting on the experiences of the therapist is beyond the scope of this paper; however, the therapist’s reflection on developing a telehealth-based art therapy service has been published as a source of reference and advice for other practitioners.22, 23 participants participants were approached by members of the multidisciplinary team following multidisciplinary team meetings where potentially suitable patients were discussed. inclusion criteria included patients who were recipients of specialist palliative care and who lived in a rural location (determined as living a minimum of 45 minutes’ drive from the local palliative care unit). exclusion criteria included those under the age of eighteen, lacking capacity to provide informed consent, or who did not possess a working internet connection. members of the multidisciplinary team were initially hesitant to discuss the project with patients as a result of concerns about the ability of patients to cope with additional demands of research and learning new technology. however, over time a number of suitable patients were identified and approached by members of the multidisciplinary team who provided an overview of the service and research. patients who expressed an interest were provided with a participant information sheet and reply slip which could be returned to us (the research team). to our knowledge, all individuals who were invited to participate opted to do so except for one patient who did not have an internet connection at home and so was unable to be recruited to the study. we recruited an initial sample of four palliative care patients (3 female, 1 male) ranging in age from 48 to 72 years. all of the participants had been diagnosed with inoperable terminal cancer of different primary locations; however, they were not all necessarily at the point of end of life care (see table 1). one participant died following the first stage interview. the data collected through this interview were removed from the main analysis because of the inability to consider longitudinal sense making. the remaining three participants completed all three interviews. to maintain anonymity, the pseudonyms peggy, coleen, and jackie have replaced participant names. two of the participants (peggy and jackie) had been receiving face to face psychosocial support in the general hospital and were therefore changing to access their care via telehealth. the other participant (coleen) had previously been unable to access the face to face service due to travel difficulties and was therefore accessing her psychosocial [qualitative research in medicine & healthcare 2020; 4:8821] [page 33] article no nco mm er cia l u se on ly support for the first time. a summary of their profiles is provided in table 1. procedure we gained ethical approval for the study from the nhs research ethics and research and development committees of the local health board. we visited participants at home where they provided written informed consent and received a face-to-face demonstration of the telehealth system. we provided written instructions and asked participants to repeat the demonstration independently to ensure they understood how to make the connection. we conducted monthly semi-structured interviews in the home of the participant on a one to one basis. interviews were audio recorded for the purpose of transcription and asked participants about their experiences of using the system to access their support. the interview schedules were informed by previous literature exploring technology adaptation in other contexts.19 the first interview focused on previous experience of technology, experience of learning to use the system and considered benefits and limitations to the participants’ experience (for example: how did you find getting used to the equipment? how comfortable were you discussing your needs through the medium of telehealth?). additional prompts were added to the second and third interview schedules to specifically ask about whether or how their views or experiences had changed since the previous interview (for example: has your experience of using the telehealth to access support changed in any way from previous interviews? have you noticed any changes in the way that you are using the equipment in comparison to previous months?). interviews ranged in length from 21 to 79 minutes depending on the patient’s health on the day of the interview. data analysis each of the semi-structured interviews was transcribed verbatim using a professional service. we used longitudinal interpretative phenomenological analysis (ipa) to consider individual experiences over a three-month period. whilst ipa is a well-known qualitative methodology for understanding lived experiences in health,24 longitudinal ipa continues to be a novel approach to understanding temporal subjective experiences, and, methodological frameworks to guide analysis are limited.25 smith and osbourn26 suggest that when using ipa it is advisable to begin analysis by looking at one case study in detail before moving on to examine the others. due to the longitudinal design of this study, this advisory note was extended to look at each individual time-point interview in isolation before considering across time for each individual and later across cases. the analytical process involved using a double hermeneutic approach focusing on how the participant made sense of their experience before commencing our own interpretative process. i (first author) was responsible for coding and theming the data at an individual level across time and for the development of the overarching themes that illustrated the longitudinal process across participants. my co-authors reviewed coded extracts and themes to triangulate perspectives and contributed to interpreting the underlying sense making and interpretations that were being voiced by participants. we adopted farr and nizza’s25 recommendations for reporting findings with consideration of both the longitudinal and cross case aspects of the data. this allowed greater insight into the meaning behind the respondent’s sense making at a specific time point, and whether this changed during their three-month involvement in the research project. results we identified four superordinate themes that represented the temporal changes relating to telehealth use across cases and time points. these were titled: deepening understanding through unburdened and continuous connections; the ever-present paradox of visible and invisible telehealth; insight into the holistic self: from barrier to facilitator; and, the immediate change from unnecessary distraction to mindful engagement. deepening understanding through unburdened and continuous connections feelings of isolation either through illness, remoteness or disconnect were a key focus for all participants who sought opportunities to develop meaningful relationships with people and their environments. participants were concerned about burdening family and friends with their diagnosis and worries; however, the continuity of the relationship with the therapist over time led to the development of a deeper sense of understanding of their concerns. the ability to do this with a trained professional whose role it was to support them, also alleviated them of concerns about the burden they were placing on the shoulders of another. [page 34] [qualitative research in medicine & healthcare 2020; 4:8821] article table 1. patient demographics and profiles. participant indicator age gender cancer diagnosis living situation peggy 48 female breast alone coleen 63 female lung alone jackie 72 female bone recuperating in a care home no nco mm er cia l u se on ly jackie was temporarily recuperating in a care home away from her friends and family. in the first interview, she discussed a lack of connection between herself and the carers, who she regularly referred to as friendly but very busy. she referred to feelings of isolation from being away from friends and family. by the end of the first month the connection that jackie had developed with the therapist during telehealth consultations had already started to create a consistent sense of relatedness that offered an outlet to discuss her concerns. well, it’s just nice to have somebody to talk to. i think the most important thing is it’s nice to have someone that cares, what you think and how you’re feeling which because obviously my family are all away, i don’t have anyone to ask how i am or what you’re feeling. everybody is too busy. [jackie; month 1]. as time progressed, jackie became more independent and required less care from residential staff; however, the isolation of the care home and a disconnect from an enriching environment appeared to limit jackie’s feelings that she was able to connect in the same way during her consultations. the feeling that her experiences failed to change from day to day limited the variation of the conversations that she felt able to have. i haven’t got lots to talk about to be truthful, being in one room in a home. not much happens. so, there’s not a great deal to talk about really. [jackie; month 2]. by the final time point, jackie had become well enough to move to supported housing where she could live more independently. as the potential to develop better connections outside of the care home became a possibility, so did her invigoration for conversation with the therapist. jackie recalled previous experiences of having close connections with friends to the point that they could identify each other’s concerns, despite them not being articulated. jackie drew comparisons with the relationship that she had developed with the therapist who could provide a balanced view but with a degree of personal insight to her situation, thus suggesting that they had been able to form a close connection in a similar manner. yeah, it’s just having a talk with someone really and it’s just like knowing that there’s somebody there that they know what’s going on and sometimes — because in my experience, when i have a friend that’s going through a problem, i think sometimes they pick up things that you don’t really know is happening. so, sometimes i feel i’m down but then i get talking, well i’m not too bad. [jackie; month 3]. coleen’s ill-health had recently resulted in her having to leave her much loved cottage in her local community to move to a more modern apartment. the disconnect from her previous home and friends had left her feeling isolated and lacking support and the feeling of not wanting to burden friends with her worries about her terminal illness were evident across the three time points. the telehealth connection enabled her to build a consistent and supportive relationship with someone who was trained to cope with the difficult conversations that coleen needed to have about her terminal diagnosis. the friends i’ve left it’s a bit upsetting, you know, because i can’t see them and i haven’t really wanted to talk to them on the ‘phone because i’ve had no energy or i’ve just been so ill i thought nobody wants to hear anything i’ve got to say at the moment, i wouldn’t impose it on anyone. so that’s been good having [therapist’s name] because she’s sort of obviously trained to deal with — like your friends aren’t trained to deal with all the stuff you sort of go through. [coleen; month 1]. coleen’s connection with the therapist developed into a mutual understanding that despite a cheery persona the concerns and experiences continued to exist under the surface. it was apparent that the quality of the relationship that developed remotely with a trained professional provided a deeper connection to enable coleen to share aspects of her life that she wanted to protect from friends and family. i feel better that i’ve — that she can deal with it, although the people i talk to i wouldn’t say anything i didn’t think they could deal with, but then a lot of people they sort of say, but you always look so cheerful and he [neighbor] said you look well, he looked cheerful and i suppose talking to [therapist] she can see that, but she knows there’s big issues going on which i can explore more with her [coleen; month 2]. by the final time point, coleen reflected on the fact that her long-term relationship with the therapist had resulted in a deeper understanding of her progress. insight into her changeable feelings came without the need to hide her true emotions in the way she felt she needed to with others. i imagine [therapist] expects the whole thing to be more of a process in you are going to churn things over and then come back at a later date and think well that’s how i was feeling then, but i feel like this now (...) so it’s quite good i suppose that she can follow your progress through the treatment and probably have more of an understanding of what you’re going through than sort of people you see every day [coleen; month 3]. unlike coleen and jackie, peggy continued to live in a small rural village amongst her community. for her the need for a connection was less evident in her interviews, suggesting that her needs for support were being met outside of the service being offered. however, on the few occasions that peggy discussed the nature of her relationship with the therapist, the role of the environment appeared a key feature. at time one, peggy discussed a feeling of dis [qualitative research in medicine & healthcare 2020; 4:8821] [page 35] article no nco mm er cia l u se on ly tance when meeting over telehealth; however, having previously been in the therapist’s room, being able to see into a familiar environment helped to draw this connection closer and create a feeling of being present. the difference is, that i suppose is that slight distance feeling of, you know, you are looking at somebody on the screen although it does kind of look really real (…) but because you know the room and you’ve been in there, the same sort of space, then kind of i suppose it does feel like you’re really there. [peggy; month 1]. the importance of visualizing the other person’s physical location re-emerged for peggy at month 3, but this time from the other person’s perspective. for peggy, the fact that the therapist could visualize her environment created a feeling of inviting her into her home. this sense of sharing an environment, albeit virtually, helped to form a closer connection, and in a similar manner to jackie and peggy, elevated the therapist to a status of being a friend. i think because like on the teleconference they’re in your home, you kind of feel more familiar with them. whether that’s a good or bad thing with a therapist, i don’t know, but you kind of feel more like they more fall into the category of your friends because obviously they’re coming into your home [peggy; month 3]. the ever-present paradox of visible and invisible telehealth the changing visibility of the technology within the physical and virtual environment emerged as a relevant theme for participants, but the manifestation of this varied across the three time points rather than changing as a process. all participants, at varying times, discussed how the distance created by the technology made them less visible which facilitated a freedom to talk. however, at other times being consciously aware of the technology also served a meaningful purpose, creating focused conversation, acting as a comforting reminder of available support, or creating a protective shield to the visibility of their emotions. both coleen and jackie started the process as self-described technophobes, claiming to have little experience or confidence with technology. despite this, coleen discussed how she quickly lost the conscious awareness of being in conversation through a machine; however, she was surprised when the conversation reminded her that the person on the other side of the screen had a view of her. this suggests that in a short space of time, the technology became invisible to coleen and the conversation felt natural. i think it did (feel natural) almost straight away. i just forgot that i was talking to a machine. so but yeah, i don’t it’s gone now. i don’t know. i think almost instantly i, it seemed to become fairly natural apart from when she said don’t forget your tea and made me jump. [coleen; month 1]. however, over time the computer became visible as an extension of the shared virtual space. the physical presence of the technology acted as a reminder of her opportunity to discuss things that were worrying her; enabling her to mindfully place concerns to one side until a future appointment and providing a symbolic connection to the source of support. well, in every way it’s just quite amazing having a screen and somebody (laughter) i don’t know. just because (…) well so you have it in your mind. that will be my slot when i can discuss all my problems and everything so (…) you can just sort of think well, okay, i’ll put those in a box and i can talk about it with [therapist] rather than having it going around and around. [coleen; month 2]. interestingly, when contrasting her own initial assumptions that a face to face relationship would be superior, coleen reflected that the physical technology acted as a shield between her and the person on the other side of the virtual divide. for coleen, the lack of physical proximity offered a protective barrier that enabled her to feel more able to express her emotions: yeah because you might think well, okay, that’s easier [being face to face] because i can unload myself more although i’m still doing it to [therapist], you think it’s sort of a shield sort of thing whereas it might be different if i’m [in person]. [coleen; month 2]. however, in the same interview, the invisibility of the technology re-emerged when she discussed the benefits of the distance afforded by the technology and reflected on her continued ability to disclose more personal information than she would have done in a face to face interaction. coleen believed that the honesty that was developed in the virtual environment allowed the therapist a better insight to her true self. well she might even know me more from doing it like that from face to face really. (…) so probably i’ve just disclosed or talked about more than i would have done in real life, really. [coleen; month 3]. jackie required support from care home staff to set up the technology ahead of consultations, but she also adapted quickly to the telehealth system. by the end of the first month she was discussing the benefits that being on the other side of the screen afforded her in terms of expressing her feelings. whilst being able to visualize the therapist, jackie also discussed being on her own as though the distance created a comforting invisibility from the therapist, enhancing her perceived ability to express herself. and i think also, it sounds silly but being in a room where you’re on your own, you tend to talk more because you feel that there’s just nobody there. [jackie; month 1]. by the second time point this distinction between face [page 36] [qualitative research in medicine & healthcare 2020; 4:8821] article no nco mm er cia l u se on ly to face consultations and the telehealth system appeared less apparent and jackie saw the two as directly comparable in terms of the quality of interaction, suggesting that the distinction between what was visible or invisible, present or remote, became less important. it doesn’t make any difference to me whether she comes to see me in the room or the computer. as i’ve said, i just have a talk with her and that’s it really. so, it doesn’t make much difference at all. [jackie; month 2]. in the final interview, jackie continued to see no difference in the quality of interaction; however, she returned to reflecting on the benefit of being able to enter a space where the therapist was not visible and her experience became aligned to talking to oneself. it appeared therefore that the ability to choose whether the therapist was visible or not created the freedom to just talk. to be truthful, i don’t find any real difference. i just sit down and talk. sometimes, i don’t even look at [therapist name] i just talk either way and i think if anyone could see me sat in this room talking to myself — no, but i find it very good, yeah. [jackie; month 3]. peggy had experience of using computers for the purpose of emails and surfing the internet; however, had never used videoconferencing. she had previously been accessing support from the therapist face to face and she reflected on this comparison. she acknowledged the impersonal nature of the technology, however, for peggy, the visibility of the therapist enhanced the intimacy and focus of the interaction. i suppose one thing cancels the other one out in that respect because you are looking at a screen at the end of the day, so it’s probably more impersonal in that way. but then because you are very much focused one-on-one and there are no other distractions, then yeah, i kind of think it does, probably cancels it out really. [peggy; month 1]. however, the unfamiliarity of the interaction was evident and potentially enhanced by the contrast of the perceived intimacy and the cold closing of the interaction at the end of a consultation. for peggy, the need to ‘switch someone off’ gave an awkward abruptness to the move from visibility to invisibility of the therapist. that is kind of a bit weird really because you kind of like — you kind of wrap it up, but normally in that case you’re going to move in that room and you’re still together. whereas you feel like you’re turning somebody off, you know [peggy; month 1]. whilst the central part of the consultations became familiar and natural for peggy, enabling her to forget the remoteness of the consultation, the instant visibility and later invisibility at either end of the consultation continued to feel alien and uncomfortable. i think the initial start is a bit uncomfortable for me still, when you first sort of ping and you see each other and you’re sort of — but when i do get into it i do kind of relax more and kind of forget more that i’m actually on the conference. and then at the end, again it can feel a bit strange i think because you’re kind of a bit like sometimes when you’re on the phone, like you hang up first, no i’ll hang up first (laughing) [peggy; month 2]. in a similar manner to coleen, by the end of month 3, peggy reflected on the symbolic role that the visibility of the technology played for her by extending the shared virtual space and acting as a reminder of the support that was available to her. i think maybe from a psychological point of view it’s having the equipment in your house makes you feel you’ve got that connection. whereas when you come here [hospital] and you go home, it’s like you don’t have any connection do you? i mean, i know it’s only a computer in your room, but it does feel i suppose that you’ve got that constant connection if you need it [peggy; month 3]. insight into the holistic self: from barrier to facilitator the visual element of videoconferencing was a feature noted by all participants. sense making of the self was initially stilted by being aware of the physical image on screen, this created feelings of self-consciousness and removed the naturalness of the conversation. this became less relevant for different participants at different time points; however, as time progressed this consciousness was replaced by an increased awareness of the benefits that came with the therapist being able to see them. the ability of the therapist to read their emotions and be aware of their own physical space helped to create a sense of being a person within a context, in contrast to a patient in a hospital. for coleen, being able to see someone, and be seen, held them more accountable in the conversation and ensured a focus being afforded to one another. i feel that when you’re talking on that that you’re (pause) — i don’t know, that you have more a sense of responsibility in the conversation somehow because she can see someone. [coleen; month 1]. the ability of the therapist to see coleen in her own home or being able to show pictures that she had drawn of meaningful places also created a sense of improved understanding and awareness of her holistic self. being able to convey to the therapist where she chose to spend her time and have insight into her life appeared to be an additional way to reflect her identity. and i mean, that’s amazing because you couldn’t do that on the ‘phone really and [therapist name] can probably understand me better because i can say this is where i choose to spend my day, this is what i like. [coleen; month 1]. [qualitative research in medicine & healthcare 2020; 4:8821] [page 37] article no nco mm er cia l u se on ly the awareness of her own image only became apparent to coleen at time 2 where she discussed the dislike of being able to see herself. she also reflected on this at time 3 discussing how her own image distracted from the conversation. however, she had been made aware of how to hide this element, enabling her to avoid seeing a constant reminder of herself. it’s a bit alarming when you come in and see yourself on there, i don’t mind seeing [therapist] but i don’t like it when i’m up on the screen. [coleen; month 2]. however, by time point three the benefits of being able to see each other had more of a focus for coleen; again, she discussed how the added visual communication enabled an increased ability to read someone and better understand their underlying emotions. oh, i think that’s better on the screen if you — just the fact that i could show her drawings. it’s more strings to the bow, isn’t it, they can get more idea than on the telephone (…) because you can quite disguise it on the telephone, but you can’t really when someone can see you. [coleen; month 3]. the visual images of the self also added a sense of self-consciousness to the interaction for peggy. she discussed feeling suddenly aware of her appearance through the portrayal of her own image on the screen and this acted as a distraction to the deeper sense making that the therapy encouraged. however, she discussed how over time the initial focus on the image of herself became minimized and faded to the point of disappearing. you can see yourself as well, which is kind of — because normally if i was there in the room i wouldn’t be able to see myself. but because you’ve got that little picture of yourself on the screen as well, you suddenly realize you’re slumping, sit up straight and my body posture is terrible. you kind of get a little bit distracted from that initially, but as you get used to using it you kind of don’t look at that little picture of yourself; that kind of just seems to disappear even. [peggy; month 1]. at month 2 peggy continued to reflect on this and attributed her discomfort with her image to the unfamiliarity of the technology as a mode of conversation, comparing it to the familiar feeling of communication without visual input. i feel a little bit self-conscious when it’s faceto-face on the screen. but again, i think that’s just time because i don’t use teleconferencing for anything else [peggy, month 2]. however, despite this unfamiliarity, peggy appreciated the benefit that the added visual ability could have for the therapist, enabling her to gain a better understanding of peggy’s emotional wellbeing through these cues. i would think probably from her point of view the teleconference would tell her more where you stood emotionally and stuff because obviously you’ve got that added dimension of being able to see the person’s body language and how they are. [peggy; month 2]. the unfamiliarity of the visuals of the self were slowly becoming more familiar to peggy by time point 3; however, she continued to dislike seeing herself on screen. she had become aware of the ability to remove this screen from the visual scene portrayed and felt that with continued use the prominence of the self-image would be minimized in importance. i think slowly i’m getting used to that, slowly. it’s still a bit strange i think. but it’s that whole thing isn’t it when you see photographs of yourself, you’re like ooh. and it’s like constant you’ve got a photograph of yourself staring back at you, although you can turn it off...yeah, i mean it’s kind of okay i think over time you’d kind of block it out. it would just become something that you didn’t kind of think about, i think probably over time. [peggy; month 3]. jackie’s initial experience was different from the other two participants’ experiences. jackie described being conscious of others seeing her visual expressions when communicating face to face about emotive subjects. however, when communicating remotely via videoconference, jackie appeared to be less concerned about the therapist’s ability to see her. it appeared that the distance created by the technology removed this self-consciousness for jackie, enabling her to feel more able to express herself. so, i’m talking to her but i talk — if you’re face-to-face with someone you have to hold back a lot, because obviously they can see your reaction. so, when i went at the computer, i just got along. [jackie; month 1]. interestingly, in comparison to the other participants, jackie made no reference to the visual aspects of the consultations at any time points after this, and by the final time point only reflected on the strength of her relationship with the therapist and the ability to have meaningful conversations. this might either suggest that the visual element of videoconferencing had no significant role for jackie, or that the images appeared adequately natural such that this was no longer a notable feature for her. the immediate change from unnecessary distraction to mindful engagement the need to travel to consultations was a considerable burden for these rural patients. from as early as the first month of the telehealth service, participants discussed the benefits of being able to remove unnecessary practical worries. this created space for participants to engage with their own therapy in a more mindful way and facilitated more autonomy about how they spent their own time. for coleen, the telehealth connections removed the pressure to involve other friends or family to drive them to consultations and alleviated concerns about parking at the hos[page 38] [qualitative research in medicine & healthcare 2020; 4:8821] article no nco mm er cia l u se on ly pital. the removal of this additional stress and anxiety enabled coleen to achieve more focus in her sessions. it’s really nice being able to do that [talk to someone] without having to make a journey and because then when you do that you’re more focused on the road and the getting there and the traffic lights or you know, parking. and this you can just turn up and do what the actual thing is about rather than having to be side-tracked in all these other experiences. [coleen; month 1]. coleen continued to draw this comparison between the hospital environment and her ability to connect from home. the hospital contributed additional worries and concerns that fed into consultation time and she became preoccupied with these concerns preventing her from focusing on the deeper psychological concerns that she may have been experiencing. for coleen removing this unnecessary anxiety allowed a more focused discussion with the therapist. because by the time we’ve done the journey and gone into different environment, hospital, you’re taking on all that, aren’t you?...yeah, then when you go to talk about it you’re probably more likely thinking about the problems you’ve had on the journey rather than the problems going on in your life. so i think this is much more immediate like that. [coleen; month 2]. in the final interview, coleen focused less on the anxieties of the hospital environment and focused more on the risks of chemotherapy induced immuno-suppression. she was mindful of the need to avoid too much contact with people who could carry infection and considered the telehealth consultations a way to ensure continued support but without the risks to her health. …when you’re having chemotherapy, you’re told to avoid people all over the place, so that is actually a really good opportunity isn’t it, to have someone to talk to that you’re not going to catch a cold. [coleen; month 3]. peggy also saw the removal of the unnecessary travel concerns as an opportunity to better prepare for and reflect on her sessions. she used the additional time to take notes before and after her consultations thus feeling she had space to achieve more sense making from her therapy. i think the other advantage of doing it from home as well, is that after the session if you need to make any notes or you just want to sit quietly and think about what’s been said or do some work on what you’ve done in the session, you can obviously do it straightaway. whereas if you’re in town you’ve got to drive home and then you’ve forgotten. [peggy; month 1]. this continued to time point 2 where peggy would reflect on what she wanted to get out of sessions more mindfully. being on your own ground also created a sense of confidence, enabling her to take a more active role in her consultation and direct the conversation to her own agenda. and usually they say something like, okay is that it? or, are you happy? or whatever and, you know, if you’re at home on your own ground it would give you that bit more confidence to say i need to ask you this. [peggy; month 2]. the burden of attending hospital appointments continued to be evident for peggy in the final interview. peggy discussed how travelling to appointments dominated a full day, causing fatigue and wasted opportunities. peggy reflected that connecting from home freed up her day enabling her more opportunities to engage with the things that she enjoyed in her life. being able to stay at home (…) like i’ve come in today to [the hospital] it’s been that’s what i’ve done for the whole day, if you know what i mean (…) but, you know, if i was at home that would have taken an hour of my time at home, if you know what i mean, and i’d probably of {sic} had the rest of day to do what i want. so, i think that’s probably the main advantage. [peggy; month 3]. jackie was not connecting from her home environment and instead was connecting from the nursing home where she was recovering from treatment. there was therefore limited discussion about the benefits of the home environment for her as she convalesced away from home. despite this, at the first-time point jackie discussed how the added privacy of being in her own room within the care home, away from the proximity of the health professional with whom she was connecting was key to her ability to speak freely and honestly about her condition. to be truthful, as i said, i think it’s easier for me to talk, even though i can talk to — you know, but i just feel like i said before, you feel that you’re on your own, the door is closed. no one can listen or hear you. so, i think i tend to talk probably a bit more. [jackie; month 1]. discussion in this study, we aimed to address the research question: how do palliative care patients make sense of their experience of using telehealth to access psychological support over a three-month period? the participants represented individuals of varying ages, all with cancer diagnoses of varying types and who lived in rural locations that created challenges accessing regular support from their palliative care team. experiencing their illness within a rural context had resulted in individuals being unable to access formal psychosocial support due to a lack of service provision in their county or had resulted in them having to leave their communities to access their care more readily, or to recover from treatment. these left individuals feeling isolated from their communities. shaw et al.27 discussed the importance of feeling rooted to a place for [qualitative research in medicine & healthcare 2020; 4:8821] [page 39] article no nco mm er cia l u se on ly wellbeing needs. the upheaval and isolation experienced by each of the participants clearly challenged this connection and telehealth offered an opportunity to reconnect to sources of support. our longitudinal approach enabled a better understanding of the process that participants went through as they adapted to the technology and engaged remotely with psychotherapy. some of the experiences changed immediately within the first month of the service and continued throughout the three-month period, such as enabling individuals to avoid unnecessary practical distractions and develop a more mindful engagement with the psychotherapy service that they were offered. this created room for reflection and a focus on the self that appeared to have been reduced when receiving face to face care in the hospital. literature and theoretical approaches regularly discuss how frequently patients forget consultation information or feel too intimidated to ask questions; in consequence limiting patient satisfaction and/or compliance.28 similarly, theories such as self-determination theory29 discuss the importance of autonomy supportive environments where patients are supported and encouraged to question and engage in health-related decisionmaking. the experiences of individuals connecting from their home environment suggests that the context could provide a valuable means of addressing some of these features for some patients, thus empowering them to engage more openly with the management of their palliative care. other experiences were continually fluctuating. for example, the conspicuous visibility of the technology and therapist regularly changed as participants discussed their experience. the therapist could be visible or invisible and this served to enable the participant the choice to feel alone and private, but also supported. the technology could be consciously visible creating a protective distance or a reminder of the continuity of the available support, or it could create a sense of being invisible, facilitating a natural conversation. the additional visual stimuli afforded by telehealth enabled enhanced communication through body language or visual expression and created a sense of shared space and autonomy, where the participant could choose to invite the therapist into their home. this was perceived to develop a more personal connection through a better understanding of their intimate feelings and their holistic lives. previous research has indicated the importance of non-verbal communication in the manifestation of emotion and patient satisfaction.30 other experiences were described more as a process of development. the developing relationship between the participants and the therapist was evident as the relationship became increasingly insightful, resulting in the relationship being described in terms of friendship. despite this, participants articulated the difference between their friendships and the therapeutic relationship which placed their needs at the centre of conversation and removed concern of burden. it was evident through each patient’s experience that individuals were able to develop strong and meaningful connections with the therapist despite the physical remoteness. as such, findings of this study contrast the proposed limitation that telehealth could cause disruption to the therapeutic relationship.31 instead, findings are supportive of prior studies that have demonstrated the benefits that telehealth provision can offer for psychosocial support in rural areas.14,16 the development of these effective therapeutic relationships was built on the affordance of time dedicated to the relationship, the freedom to discuss burdensome topics without guilt, and the intimacy of personal knowledge gained through the communication. in later themes the relevance of the telehealth as a supporting rather than thwarting factor for these developments was evident. interestingly, alongside the development of the therapeutic relationship appeared to be a development of an increased sense of self. concerns about physical appearance on screen appeared to develop towards an awareness of the deeper sense making that could be created when the therapist shared the patient’s personal space, but at a safe distance. this created a sense of presenting a holistic person to the therapist, with a life beyond the hospital and their illness. the importance of assessing a patient holistically has been highlighted, supporting good quality of life and symptom management.32 thus whilst telehealth appears to have advantages for rural communities, we propose that this finding raises interesting questions about the benefits that home consultation could potentially offer more broadly in developing more patient centred care, enabling the health professional to make a connection between the individual and their lives beyond their illness. despite the novel understanding we have offered here, this study is not without limitations. as is common and encouraged for ipa studies,26 the sample size is small. it is possible that in selecting patients the multidisciplinary team may have inadvertently been biased towards individuals who they perceived to be more open to trialling such a service. as such, the experiences discussed in this study may only be transferrable to those who are open to engaging with telehealth. in addition, whilst reflective of the relatively homogenous population from which they were sampled in rural mid wales, we acknowledge that the sample was lacking in cultural diversity and included only individuals with cancer. the scope of palliative care has moved to be more inclusive of other life limiting illnesses, and different cultural backgrounds which may bring with them differing perceptions and expectations. there is a need to consider more broadly what benefits and challenges telehealth might offer individuals with dementia, motor disease or communication difficulties, for example, as well as how acceptable such a service might be to different cultural groups. the interviewer in the study (second author) was also the person who set up and demonstrated the equipment, and therefore despite all documentation being clear that we were independent to [page 40] [qualitative research in medicine & healthcare 2020; 4:8821] article no nco mm er cia l u se on ly the service, there is a possibility that patients felt less able to be critical. however, transcripts appeared to demonstrate honest and balanced views. conclusions in conclusion, our article is one of the first to consider the in-depth longitudinal experience of patients accessing psychological support via telehealth as part of palliative care. palliative care patients have been under-represented in the literature in comparison to other clinical populations, particularly with longitudinal approaches, resulting in the patient voice being less apparent in palliative care decision making. whilst the sample is small, the in-depth accounts of these patients provide important insights into why supporting patients to remain at home whilst receiving palliative care is important for their wellbeing, sense of place, and empowerment. telehealth, as a component of their care, appeared to be an effective method for achieving this, and in contrast to previous literature, demonstrated that meaningful relationships could be created between patients and health professionals despite the lack of physical proximity. we suggest that these patient experiences also raise interesting considerations about how healthcare services are delivered more generally, highlighting how the home environment can, in some situations, support patient empowerment and engagement in contrast to clinical environments. this is particularly pertinent as numerous parts of the world (currently may 2020) face lockdown and reduced face to face care in the current covid-19 pandemic. despite the obvious practical, ethical and legal challenges that can be of concern when delivering telehealth services, it is comforting to be aware of the meaningful benefits, and patient centred care, that telehealth can potentially offer. references 1. national institute for clinical excellence (2004). guidance on cancer services improving supportive and palliative care for adults with cancer. the manual. 2004;isbn:184257-579-1. p.20. 2. marie curie. dying at home: the role of social housing providers in supporting terminally ill people in wales. policy and public affairs team, wales, july 2014. 3. national council for palliative care. national survey of patient activity data for specialist palliative care services 201415. available from: https://www.hospiceuk.org/docs/ default-source/what-we-offer/publications-documents-andfiles/minimum-data-set-hospital-support-report-201415.pdf?sfvrsn=0. accessed: january 2020. 4. deaville ja. health-care challenges in rural areas: physical and sociocultural barriers. prof nurs 2003;18:262-4. 5. strasser r. rural health around the world: challenges and solutions. fam prac 2003;20:45763. doi: 10.1093/fampra/ cmg422. 6. welsh assembly government. rural health plan; improving integrated service delivery across wales. welsh assembly government report 11:19:2009. 7. hughes ph, ingleton mc, noble b, clark d. providing cancer and palliative care in rural areas: a review of patient and carer needs. j palliat care 2004; 20:44-9. 8. johnston b, kidd l, wengstrom y, kearney n. an evaluation of the use of telehealth within palliative care settings across scotland. pallit med 2011; 26:152-61. 9. kidd l, wengstrom y, johnston bm. telehealth in palliative care in the uk: a review of the evidence. j telemed telecare 2010;16:394-402. doi: 10.1258/jtt.2010.091108 10. demiris g, oliver dp, wittenberg-lyles e, washington k. use of videophones to deliver cognitive-behavioural therapy to hospice caregivers. j telemed telecare 2011;17:142-5. 11. zheng y, head ba, schapmire tj. a systematic review of telehealth in palliative care: caregiver outcomes. telemed e-health 2016;22:1-7. 12. hennemann-krause l. lopes aj, araύjo ja, et al. the assessment of telemedicine to support outpatient palliative care in advanced cancer. palliat support care 2015;13: 1025-30. 13. watanabe sm, fairchild a, pituskin e, et al. improving access to specialist multidisciplinary palliative care consultation for rural cancer patients by videoconferencing: report of pilot project. support care cancer 2013;21:1201-7. 14. olver i, brooksbank m, champion n, keeley j. the use of videophones to enhance palliative care outreach nursing in remote areas. prog palliat care 2005;13:263-7. doi: 10.1179/ 096992605x57679. 15. larson j, rosen ab, & wilson fa. the effect of telehealth interventions on quality of life in cancer patients: a systematic review and meta-analysis. telemed e-health 2018;24:397-405. doi: 10.1089/tmj.2017.0112. 16. shepherd l, goldstein d, whitford et al. the utility of videoconferencing to provide innovative delivery of psychological treatment for rural cancer patients: results of a pilot study. j pain symptom manage 2006;32:453-61. 17. stern a, valaitis r, weir r, jadad ar. use of home telehealth in palliative cancer care: a case study. j telemed telecare 2012;18:297-300. doi: 10.1258/jtt.2012.111201. 18. roberts d, taylor c, maccormack d, barwich d. telenursing in hospice palliative care. can nurse 2007;103:24-7. 19. venkatesh v, thong jyl, xu x. unified theory of acceptance and use of technology: a synthesis and the road ahead. j assoc inf syst 2016;17:328-76. 20. smith, ja. qualitative psychology, a practical guide to researchers (2nd ed). london; sage: 2008. 21. davies a., & newman s. evaluating telecare and telehealth interventions. london: the king’s fund, department of health, uk: 2011 22. jones g, rahman r, & robson, m. group art therapy using telemedicine technology for immunosuppressed patients undergoing chemotherapy. in m wood, b jacobson & h cridford (eds), the international handbook of art therapy in palliative and bereavement care. routledge international handbooks, taylor & francis: 2019. doi.org/ 9781138087330: 23. jones, g, rahman, r & robson, m. group art therapy and telemedicine. in ca malchiodi (ed.), the handbook of art therapy and digital technology. jessica kingsley publishers: 2018. 24. brocki jm, wearden aj. a critical evaluation of the use of interpretative phenomenological analysis (ipa) in health [qualitative research in medicine & healthcare 2020; 4:8821] [page 41] article no nco mm er cia l u se on ly psychology. psychol health 2006; 21:87108. doi: 10.1080/ 14768320500230185. 25. farr j & nizza ie. longitudinal interpretative phenomenological analysis (lipa) a review of studies and methodological considerations. qual res psychol (online) 2019;16:199-217. doi: 10.1080/14780887.2018.1540677. 26. smith j, osborn m, interpretative phenomenological analysis. in: smith, j. qualitative psychology: a practical guide to research methods. london, uk: sage; 2008. pp 53-80. 27. shaw rl, west k, hagger b, holland ca. living well to the end: a phenomenological analysis of life in extra care housing. int j qual stud heal 2016;11:1-12. doi: 10.3402/ ghw.v11.31100. 28. ley p. improving patients’ understanding, recall, satisfaction and compliance. in: broome ak ed. health psychology. boston, ma: springer sciences; 1989. pp74-102. doi: 10.1007/978-1-4899-3228-0_5 29. deci, el, ryan rm. self-determination theory: a macrotheory of human motivation, development and health. can psychol 2008;49:182-5. 30. reiss h, kraft-todd g. a tool to enhance nonverbal communication between clinicians and their patients. acad med 2014;89:1108-12. 31. shepherd l, goldstein d, olver i, parle m. enhancing psychosocial care for people with cancer in rural communities: what can remote counselling offer? rehabil disabil ageing 2008;32:423-38. 32. maher d, hemming l. understanding patient and family: holistic assessment in palliative care. br j community nurs 2013;10. doi: 10.12968/bjcn.2005.10.7.18327 [page 42] [qualitative research in medicine & healthcare 2020; 4:8821] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2020; 4:9314] [page i] this issue, that has been realized and published during the difficult period of the global pandemic, is the result of many efforts and for this i would like to thank the editorial team and all the wonderful contributors, readers and reviewers of qualitative research in medicine & healthcare. this issue opens with a beautiful piece on narrative as aesthetic re-imagining and closes with an article on telemedicine, taking us through both a historical and symbolic timeline of our how the stories of our lives have changed as the authors’ submissions illuminate the synchronicities of the human condition and the unexpected challenges of healthcare (and the process of academic publishing!). in recognition of the experiences in our embodied and semiotic experiences, and the incarnate narratives of healthcare, we are inviting manuscripts for a special issue on covid-19 guest edited by oncologist, author and playwright lodovico balducci, md. we hope many of you will contribute. the call, with a deadline of december 1, is posted below. the four excellent articles in this issue are connected by the idea of narrative as a way in and a way out, a way to understand the healthcare experience and a way to re-create (re-search in the literal meaning of the term) an understanding of what could be. the impeccably researched and beautifully written opening article by stephanie pangborn and lynn m. harter, traversing temporalities at end-of-life: mobilizing narratives with imagination and aesthetic sensibilities is especially touching to me, for it proves that we are all characters in each other’s narratives. one year and 20 days ago, i watched my best friend die. arguably, she died after years of living with metastatic cancer that had now visibly spread to her neck, rising to the surface like pebbles at low tide. but i saw her die in the oncologist’s office on the day of her last visit, when the doctor told her the story of her life as a cancer patient was over, and she had run out of options. i was there as her surrogate and advocate, to tell the oncologists that treatments might be still available, but the oncologist would not budge. i watched my friend, already very weak, slump in her wheelchair, as i told her not to give up, but she was already gone. she asked me not to blame her for giving up. for the next three weeks, however, she lived anew in hospice. her family, who had previously chosen to ignore the gravity of her situation, chose to finally come by her bedside. they held her. while she slept in the bedroom with her morphine drip, they sat together in the living room, talking as they had not in years, looking at boxes of her old photographs, reconstructing her life in novel ways. “look at my mother”, one of her sons said to me, showing me a photo of my friend as i had never seen her, with long hair “she is so gorgeous”. “yes, she is”. my best friend died in the plot of a different story than the one in which she had lived the last years of her life as a cancer patient: imagining that her children would find their way, and that the conflicts between them were somewhat abated. i asked her forgiveness for not allowing this story, the story of her hospice death, to unfold sooner. in their analysis of how narratives at the end of life can reach beyond language to the sensate experiences that are intense and unspeakable, pangborn and harter encourage healthcare practitioners to realize that “language is limited. life and its ending are confusing, chaotic, and messy journeys but they are also beautiful, experienced and expressed in vivid ways. our stories should reflect this reality. our relational choices, personal and professional, should have the courage, the audacity, to embrace imagination as a narrative sensemaking resource that is responsive to life’s inherent fragility and vulnerability”.1 as i see it, nykanen and mikkola’s study of the discursive struggles of the client–worker relationship in social services also attends to narrative, and in this instance how locally produced accounts fit into the social narratives of social work. by analyzing social workers’ everyday professional tensions as a dialogue or dynamic inter-action between what is and what is imagined about or expected from them by clients and tropes about the profession, the authors take the first step in reconciling the relational schisms and ruptures experienced by all parties engaged in social services. this is an important step toward encouraging a novel sensemaking about the social work profession by way on narrative (re)imagining in the age of pandemic: editor’s introduction mariaelena bartesaghi university of south florida, tampa, florida correspondence: mariaelena bartesaghi, associate professor, communication, university of south florida cis 1040, 4202 e. fowler ave, tampa, fl 33620, usa; editor-in-chief, qualitative research in medicine and healthcare. e-mail: mbartesaghi@usf.edu received for publication: 18 august 2020. accepted for publication: 25 august 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:i-ii doi:10.4081/qrmh.2020.9314 qualitative research in medicine & healthcare 2020; volume 4:i-ii no nco mm er cia l u se on ly of voicing the inherent contradictions of its practice. for several years now, the story in medicine and in the media has been that we are in the midst of what cataldo, collins, mckinnies, nichols, and shaw write about, namely, an opioid epidemic. as someone who suffers from disabling fibromyalgia and is now personally involved in what only a few years ago i thought was a distressing social situation that would have nothing to do with me, i found addressing the opioid epidemic: recommended solutions from physicians a fascinating article. i am glad the authors present the difficulties encountered by physicians as they face more and more scrutiny, and as their compassion is challenged by strict regulations imposed to curtail the problems caused by the unrestrained prescribing practices of the recent past. and yet i also wonder, as someone who used to refuse pain medication even after surgery and now cannot remember life without pain, if physicians (including those interviewed) have any idea what pain feels like. what if the opioid epidemic were reimagined as an entirely different narrative from that told in medical terminology? what if it could be seen in the faces and bodies of those who are suffering and often referred to as drug seekers or addicts? opioids barely make a dent in my pain and they are certainly not what i “seek”. more studies such as this are necessary to urge physicians to think of solutions but also to think narratively and dialogically, so that the story of finding solutions could be retold together with those who are desperate for relief from pain. the closing article brings us to the present time, as many of us are engaged at either end of telehealth – as healthcare professionals, patients and clients in the midst of a pandemic. but rahman, keenan and hudson’s exploring rural palliative care patients’ experiences of accessing psychosocial support through telehealth: a longitudinal approach is not about covid-19, but rather about delivering art therapy to palliative care cancer patients who, by virtue of their physical and geographical limitations would otherwise not have access to a therapist. the study therefore gives the “sense of an ending” to the opening article, by coming full circle in a synchronicity between narrative and life. rahman, keenan, and hudson find that virtual communication is in no way less than its face to face counterpart (as many of us would be guilty of believing). in fact, the affordances of the screen as a site of engagement between therapist and patient allows for different “states of talk”2 to unfold, where the screen was not a barrier, but a shield of “comforting invisibility”3 and “the ability to choose whether the therapist was visible or not created the freedom to just talk.3 together with social distancing, the term unprecedented comes up a lot lately. this is a time of unprecedented loneliness. the authors of this issue, each in their own way, invite us to challenge tired assumptions, and enter into novel spaces of dialoguing, thinking, feeling, sensing. references 1. pangborn, s, harter l. traversing temporalities at end-oflife: mobilizing narratives with imagination and aesthetic sensibilities. qualitative research in medicine and healthcare 2020;4:8642. 2. jones r. spoken discourse. bloomsbury academic; 2006. 3. rahman rj, keenan j, hudson j. exploring rural palliative care patients’ experiences of accessing psychosocial support through telehealth: a longitudinal approach. qualitative research in medicine and healthcare 2020;4:8821. [page ii] [qualitative research in medicine & healthcare 2020; 4:9314] editorial call for papers qualitative research in health and medicine, special issue on living through covid-19 special issue guest editor: lodovico balducci, md, moffitt cancer center the median age in the usa is 38. this means that half of the population was born on or after 1982. for most americans and western europeans, the epidemics of asian influenza is remote history. even the memory of those few who were alive is tainted by the limited medical science and resources of the time. suffice it to say that the structure of the dna had been defined only one year prior to the asian, that viruses were mostly the product of imagination, that intensive care units were unknown, clinical epidemiology was unsophisticated and the population was much younger and at a lesser risk of dying. so, the epidemics of covid19 is for everybody a new and novel experience. the goal of this special issue of qualitative research in medicine and healthcare is to bring forth the lived experience of the coronavirus. in particular we will focus on two interwoven aspects. the experience of health professionals and academics affected by the disease, and how the pandemic has influenced our research, our priorities, our practices, faith, our constructs of justice, health, safety, and love. the basic question we plan to address is: what is it like to practice medicine at a time of uncertainty and ongoing death? evidence-based studies are completely inadequate and only the description of personal experience may provide guidance to accept uncertainty. that is when literature and art become an investigative tool. it is the time of qualitative research. due date december 1, 2020. for questions feel free to contact the editor, mariaelena bartesaghi: mbartesaghi@usf.edu or the guest editor, lodovico balducci: lodovico.balducci@moffitt.org http://pagepressjournals.org/index.php/qrmh/index no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2021; 5:9724] [page 55] introduction research is increasingly being conducted by teams in nearly all disciplines.1 multi-university collaborations, among the most complicated, are growing the fastest.2 yet, there is a dearth of qualitative studies focused on interdisciplinary team scientists’ perceptions of collaboration effectiveness within federally funded research center partnerships. for this study, a “center” is defined as partnership between two or more universities that include a minority-serving institution (msi) and predominately white institutions (pwis). collaboration is broadly viewed as the ability and willingness to share resources, knowledge, and outcomes in a manner that benefits participating institutions so that it augments existing services and builds the capacity for nascent or unavailable services and contributes to longer-term societal outcomes associated with these programs. with the aid of a person-centered approach, and use of surveys or interviews, participant perceptions of collaboration effectiveness can be ascertained. alternatively, collaboration effectiveness can be assessed by analyzing the extent of shared publications, using bibliometrics or media products with a system-centered approach. engaging interdisciplinary researchers, biomedical and social scientists, clinicians, and community health educators in team science across geographically situated institutions and academic departments whose values for teaching, assessing collaboration among team scientists within a triadic research center partnership linda s. behar-horenstein,1 joyce m. richey,2 ukamaka diké smith3 1school of human development and organizational studies in education, university of florida, gainesville, florida; 2department of clinical physiology and neuroscience, university of southern california, los angeles, california; 3department of pharmacy practice, florida agricultural and mining university, tallahassee, florida, usa abstract few studies have utilized qualitative methods to assess the perceived effectiveness of collaboration among research center interdisciplinary team scientists. stages of team development served as the theoretical framework to characterize minority serving institution (msi) and predominantly white institutions (pwi) participants’ challenges and successes during a national institutes of health (nih) sponsored cancer health disparities training and research program. we present the finding of an inductive analysis of four open-ended survey questions across two years. fostering an awareness of the inherently taxing, yet centrality of group (team) development may advance an understanding of team dynamics and lead to increased team cohesion and productivity. in conclusion, we provide recommendations to assist multiple principal investigators who embark on team development. correspondence: linda s. behar-horenstein, school of human development and organizational studies in education, university of florida, 7916 monarch ct. delray beach, 33446 fl. e-mail: lsbhoren@ufl.edu key words: interdisciplinary research teams; collaboration; team development; cancer health disparities training and research; evaluation; msi-pwi partnerships; team science; inductive analysis. contributions: lb-h made substantial contributions to 1) the conception and design of the work, 2) the acquisition, analysis, and interpretation of data for the work, 3) drafting the work and revising it critically for important intellectual content, and 4) final approval of the version to be published. jr made substantial contributions to 1) the analysis, and interpretation of data for the work, 2) drafting the work and revising it critically for important intellectual content, and 3) final approval of the version to be published. uds made substantial contributions to 1) the analysis, and interpretation of data for the work, 2) drafting the work and revising it critically for important intellectual content, and 3) final approval of the version to be published. all authors agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. conflict of interest: the authors declare no potential conflict of interest. funding: research reported in this publication was supported by the nih/ national cancer institute awards u54ca233444, u54ca233465, and u54ca233396. the content is solely the responsibility of the authors and does not necessarily represent the official views of the national institutes of health. availability of data and materials: not applicable. ethics approval and consent to participate: the ethics committee of the university of florida approved this study (irb201903425). the study was deemed exempt. the study conformed with the helsinki declaration of 1964, as revised in 2013, concerning human and animal rights. completion of the online survey was a proxy for a signed written informed consent. informed consent: not applicable. received for publication: 3 march 2021. accepted for publication: 23 july 2021. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2021 licensee pagepress, italy qualitative research in medicine & healthcare 2021; 5:9724 doi:10.4081/qrmh.2021.9724 qualitative research in medicine & healthcare 2021; volume 5:9724 no nco mm er cia l u se on ly scholarship, and research may vary widely will likely influence a center’s capacity to achieve grant outcomes/benchmarks. working across universities, researchers are often expected to collaborate in teams, with one or more representatives from each institution. few field studies have explored the team science development processes among interdisciplinary researchers at the onset of funded projects. the costs associated with studies that do not rely on survey methodology can be prohibitively labor intensive. further complicating qualitative inquiry is team science where there is a lack of consensual conceptual agreement regarding the characteristics of each developmental stage. while others have used psychometric measures to assess collaboration, qualitative studies are infrequent.3 the importance of qualitative inquiry cannot be understated as it has the potential to elucidate the complex interacting factors in real-world environments. engaging social scientists in research on the emergent state of team science can enrich inquiry via the development of theoretical models to inform researchers of its unique dynamic and contextual factors.4 herein, we employed the long-standing typology of group development (akin to team development) proposed by the tuckman and tuckman and jensen to assess collaborative team science dynamics.5,6 tuckman and tuckman and jensen categorized the stages as: i) forming, ii) storming, iii) norming, and iv) performing. during forming, participants are typically engaged in establishing norms to guide interactions and work as they become acquainted with processes and goals. characteristics of storming include responding to conflict, identifying differing views about the center’s mission, determining how work should be organized, and negotiating how much influence one member may hold over others. while in norming, participant energy is often dedicated towards building consensus and developing cohesion, identifying the mission, and establishing operational practices to guide work. as participants develop a sense of mutual respect and camaraderie, they enter the stage of performing where shared leadership roles among members and assigning roles and tasks based on group member’s skill and expertise is often observed.5,6 this framework is widely accepted in psychological studies of group dynamics.7 groups are typically comprised of people who come together to resolve and remedy issues that influence the quality of their day-to day-living or impact relationships. in these settings, individuals are often afforded opportunities to draw upon the insights that the therapist and other individuals offer. though the motivation for working in this type of group is different from that which brings team scientists together, the dynamics that characterize interpersonal group interactions are similar. team scientists, like groups, tend to organize themselves by adopting rules or norms that regulate behavior. member often align themselves with allies according to shared values and what is in their best interests. all groups naturally create a division of labor. the degree to which team members collaborate is likely influenced by i) perceived norms, ii) institutional demands, iii) perceptions of mutual benefits, iv) the degree to which a member feels validated by other members, v) the level of trust, safety, and cohesion a member feels, and vi) individual perceptions of the equitable distribution of power, control, and contributions. assessing collaboration may broaden our understanding regarding how each person’s actions and contributions fit within a larger context of the aims of the grant. after all, effective teams are not accidental. they must be meticulously formed by bringing together highly skilled, highly motivated individuals who have a clear picture of their goals and can recognize tangible evidence of their achievements.7 researchers have argued that the degree to which pwi and msi team scientists perceive their collaboration is not well understood. warren, behar-horenstein, and heard, and davis, warren and behar-horenstein suggest that these relationships, typically, are not true partnerships.8,9 in a 20-year review of msis and pwis, davis et al. (in press) reported a pattern of inequitable partnerships and mechanisms that averted or prevented msis from maximizing their research scholarship, faculty productivity, and funding capacities.9 they recommended studying msi-pwi partnerships while they are evolving rather than at the conclusion of grant funding. in this study, we assessed the msi-pwi team scientists’ perceptions of interdisciplinary collaboration effectiveness within the context of group development theoretical framework. to the best of our knowledge, qualitative studies such as this have not been undertaken while the partnership is evolving. studies of interdisciplinary team science a growing interest in enhancing cross-disciplinary collaboration among health scientists has prompted several federal agencies, including the nih, to establish large, multicenter initiatives to foster collaborative research and training. yet, few studies have focused on the impact or effectiveness of interdisciplinary collaboration in science teams. unique factors create an imperative to study these teams in context by assessing the processes related to working in transdisciplinary teams. providing such opportunities can advance our understanding of varied forms of collaboration.10 in a review of quantitative studies, hall et al. provide a comprehensive overview of team science characteristics including its values, team formation and composition, processes central to effective team functioning, and organizational and institutions factors that impact the success of effectiveness of their collaborations.10 new strategies for evaluating research processes and products as well as the longer-term societal outcomes (i.e., public health improvements) associated with these programs are essential to assessing the effectiveness of collaborative scientific initiatives.11-14 in this [page 56] [qualitative research in medicine & healthcare 2021; 5:9724] article no nco mm er cia l u se on ly paper, we describe a qualitative approach that was used to assess the effectiveness of collaboration among msipwi multi-disciplinary science teams. previous evaluation studies have assessed collaborative processes and outcomes during the mid-term or later stages of an initiative, while hall et al. assessed antecedent factors present at the outset of an initiative using indexes of collaborative readiness, along with additional measures of near-term collaborative processes that may influence the effectiveness of team collaboration over the duration of the program.12 studies of teams, groups, organizations, and management in industry and the military provide a body of evidence for effective teaming.12 previous studies of teams, undertaken in laboratories, aviation and military settings, and complex organizational environments,13-15 were guided by the input-process-outcome model of teamwork.16 facets of collaboration such as individual attitudes, information sharing, solution identification, and relationships among concepts were assessed to determine how they impact team effectiveness. in recent years, multilevel analyses have offered a more holistic understanding of collaboration.17,18 however, the increased demand for scientific collaborations has outpaced an understanding of the factors that are needed to support teams in science, such as institutional structures, policies, and culture. therefore, assessing the effectiveness of collaboration among team science researchers across their disciplinary, organizational, and cultural boundaries is vital to address increasingly complex challenges and opportunities in science and society.10 background information about this msi-pwi partnership the center (hereafter, “center” or “care2”) where we conducted this study is comprised of one msi—the florida agricultural and mechanical university (famu)—and two pwis—the university of florida (uf) and the university of southern california national comprehensive cancer center (usc-nccc). the goals of our grant are to reduce cancer disparities in blacks and latinos, train and increase the pool of underrepresented black and latino scientists conducting health disparity research, increase research capacity at a minority serving institutions (e.g., famu); and increase cancer disparity research at uf and usc-nccc. two full projects (funded across the entire grant period) and a pilot project (funded for years one to three of the grant) included investigators from the center institutions to augment the number of specimens collected from blacks and latinos, representing a wide range of subpopulations within these minority groups. the center conducted prostate cancer and pancreatic cancer studies to reveal unprecedented findings about their impact on understudied black and latino populations. the aims of these projects were to transfer cutting edge and innovative technologies to famu and to provide research training opportunities across the partnership to 120 trainees which include doctoral, graduate and postbaccalaureate students, postdoctoral fellows, and early-stage investigators (esi). overall, the aim of the center was to expand the research focus at uf and usc-nccc and address health disparities in prostate and pancreatic cancers. the research projects were supported by six shared workgroups (administrative, biostatistics and methods, community outreach, research education, planning and evaluation, and tissue modelling). each institution site hired its own coordinator to oversee the administrative tasks of the grant. as many as 48 individuals including key investigators, site coordinators, and internal advisory committee members comprised center personnel. the center was funded by the national cancer institute u54 comprehensive partnership for advancing cancer equity health (cpache) program. the premises for this funding mechanism are to i) reduce the burden of cancer disparities while building capacity for biomedical research and training at msis, ii) increase the diversity of underrepresented minorities (urms) in biomedical sciences, and iii) foster formal collaborations between research-intensive universities and minority serving institutions (msi). partnerships among research intensive and msis in cancer disparities research were initiated to ensure the: i) identification of biomarkers of cancer incidence, ii) reduce cancer occurrence, iii) provide resources to community health advocates, and iv) empower community members whose lives are impacted by cancer. currently, 16 cpache centers are funded across the us. as required by the national institute of health (nih), annual self-evaluation is conducted through the submission of progress reports from the individual projects under the program funding mechanism. each program monitors and reports the degree to which they have attained proposed objectives. researchers may assess the quality of programs using outcome measures or evidence of impact. program outcome measures may include i) reporting the number of publications that trainees and mentors co-author, ii) reporting the number of trainees who matriculate, continue in academic cancer-related research careers, or co-author publications, iii) specifying the number and list of presentations/meetings that include trainees, iv) reporting the number of program graduates who receive r01 or career development awards, v) documenting the number who hold positions as professors or leadership roles on nci committees, or vi) describing the quality of mentoring, among others. however, beyond annual self-reporting, there are no requirements for assessing the effectiveness of internal team scientists’ dynamics or collaborative engagement. materials and methods we used a person-centered approach to data collection by surveying participants. the resource and labor intensity of interviewing rendered survey use more feasible. [qualitative research in medicine & healthcare 2021; 5:9724] [page 57] article no nco mm er cia l u se on ly during the summers of 2019 and 2020, we asked center key investigators to respond to four open-ended questions in a qualtrics survey. the survey was exclusive of demographic questions or personal links; all responses were anonymous. the questions were designed to assess the center’s communications and interactions (table 1). during summer 2019 (year 1), 38 were invited; 21 (55%) completed the survey. in summer 2020 (year 2), 48 were invited, and 33 (69%) participated. the number of participants in year 2 was based, in part by an increased number of internal advisory committee members. the total number of participants at each institution ranged from 10 to 15 during year 1 and from 14 to 17 during year 2. the number of invited participants per institution included 10 from famu, 13 from uf, and 15 from usc during year 1. during year 2, there were 14 invited participants from famu and 17 from both uf and usc. drawing upon their diverse racial and ethnic backgrounds, participants included basic and social scientists, clinicians, and community health educators who were tenured, tenure-, and non-tenure accruing. for purposes of this study, the overall number of participants was considered the unit of analysis. participant data was analyzed as an entity. as the authors, we are the principal investigators (pis) of the planning and evaluation core (pec), a group of researchers assigned to provide an objective assessment of the center’s outcomes. after de-identified data was downloaded into excel, we analyzed that dataset inductively and identified emergent themes/subthemes characteristic of respondents’ replies and developed conceptual definitions. inductive analysis, also referred to as “in vivo coding” is actual language in the qualitative data that has been used by the participants themselves.19 we used the participants’ written responses in our analysis. in vivo coding is appropriate to studies that highlight and give priority to participants’ voices.20 data analysis as researchers, we are a senior professor with expertise in qualitative research, a senior basic scientist with a wealth of experience in creating, implementing, and evaluating pipeline/pathways program, and an early-stage investigator (esi) in pharmacy practice with experience in community health initiatives. prior to the analysis, we read participants’ responses to each of the four survey questions as separate entities. we met to discuss our independent notions of the emergent themes. then, we used open coding while reading line by line. we compared open coding to ensure that a systematic approach to analysis was occurring before moving on to develop categories and emergent themes. to ensure validity checking, one of us analyzed the content of two of the four questions. another author checked the thematic interpretation of the first author’s analysis. this process was repeated for the other two questions across both datasets. we discussed the emergent themes and conceptual definitions and reached consensus. themes for each survey question for years 1 and 2 are shown in table [page 58] [qualitative research in medicine & healthcare 2021; 5:9724] article table 1. themes/subthemes and conceptual definitions associated with survey questions. survey questions themes/subthemes: year 1 themes/subthemes: year 2 conceptual definitions 1. what is working well within your • collaboration • regular meetings processes, practices, and behaviors core/project team? • respect • communication frequency characteristic of teamwork • communication frequency • point person • meeting agendas/protocols 2. do you have any recommendations • reduce administrative tasks • lack of centralized workspace protocols and practices perceived as to improve productivity? • efficient/user-friendly • lack of procedural governance linked to successful trainee and research data/information management • inefficient work allocation outcomes • equity in workload • effective and efficient communication 3. what evidence can you provide that • shared responsibility/leadership • ↑productivity practices and processes aligned with demonstrates active collaboration • collaboration /infrastructure • training activities teamwork with care2 partners? resources/research project/ please provide examples. scholarship/actualizing new projects • cross institutional training 4. how can collaborations be • enhance workflow efficiency/ • strengthen collaboration/promote practices and processes perceived as strengthened? provide advanced notice and cross coreresearch project integral to successful benchmark clarity for grant needs/require contributions/increase attainment timely email response/post intra-institutional collaboration center wide resource documents networks and authorships/increase in center-wide folder intra-institutional engagement of • forge partnership identity msi student trainees • strengthen collaborations • address conflict resolution no nco mm er cia l u se on ly 1. we reached consensus on the identification of the categories as well as the themes that emerged in this study. the use of two independent coders aided us in reducing the potential for bias. reading line-by-line and coding segments assisted us in making supporting quotations more accessible to support the categories that were identified. this rigorous and systematic approach allowed us to feel confident that what we report is representative of participants’ perspectives. attention to credibility and confirmability facilitated establishing trustworthiness. credibility, or confidence in the truth of the findings, was achieved through triangulation and peer debriefing. triangulation was accomplished by i) using three analysts, ii) reviewing multiple responses to each survey question, iii) using qualitative line-by-line coding, and iv) peer debriefing to ensure the accuracy of interpretations. confirmability was achieved by engaging more than one person in analyzing the data.21 we also report the center benchmark attainment at the inception of funding by providing evidence of baseline data for publications, presentations, funded projects, grant submissions and awards, the number of urms student trainees and esis, and other awards at the close of year 2. results in this section, we provide an overview of the themes and subthemes along with anecdotal support for each survey question by years 1 and 2. next, we provide a comparative analysis of the findings and describe the association between findings and the stages of group development. we conclude this section with a summary of baseline and year 2 outcomes, referred to as “benchmark attainment.” working well within cores/project teams year 1 five themes emerged from the analysis of what is working well within the core/project teams: collaboration, respect, communication frequency, point person, and meeting agendas/protocols. these themes were identified as processes, practices, and behaviors characteristic of teamwork. collaboration regarding collaboration, participants described the impact of “teamwork” and characterized it as a “good division of labor.” during the first year of the grant, they reported that, “collaboratively we established and later revised a protocol to guide policies and practices (effort, documentation/record keeping, communications, guidelines for sending and receiving communications, and workflow).” respect respect was exemplified by the perception of a sense of “strong camaraderie” as well as “mutual respect and commitment of the core members” devoted to “reducing cancer health disparities.” communication frequency communication frequency, experienced via email, phone, regularly scheduled meetings and zoom, videoconferencing/recordings was exemplified by the practice of “regular meetings” and the use of a “basic video-conferencing systems” that supported what participants described as “efficient and effective” communication. point person the assignment of a point person—someone who schedules and keeps the group on task—was appreciated for his role in “having someone [to] arrange conferences and remind us of deadlines for progress report.” remarking about core leadership, one participant pointed out that having this type of leadership provides “glue” to the communication that facilitated honest and forthright communication and served to keep “the group on task and held accountable.” meeting agendas/protocols advanced preparation and notification of meeting agendas/protocols ensured the implementation of “comprehensive [and planful] agendas” as well as “protocols [that provided guidelines for implementing] policies and practices.” year 2 during the 2nd year of the funding, only two themes were noted: regular meetings and communication frequency. regular meetings participants reported that “regular meetings and having joint activities that we plan together” were evidence of the role that communication plays in successful center initiatives. communication frequency many respondents noted “communicating and cooperating with each other via emails and virtual meetings” were “critical to come together as a more cohesive unit.” one participant remarked that “communication [was] held to a high standard which keeps us on track.” another stated that, “the professional relationship is strong, effective and pleasant.” others pointed out the meeting frequency promoted working together and “fluid,” cooperative communication. [qualitative research in medicine & healthcare 2021; 5:9724] [page 59] article no nco mm er cia l u se on ly comparison between years 1 and 2 in year 1, collaboration, respect, communication frequency, point person, and meeting agendas/protocols, characteristic of the stage of forming, were described as what is working well. interestingly, collaboration and respect were not evident in year 2. this subsequent emphasis on frequency of meetings and communication may have resulted from the firm establishment of practices set in year 1, suggesting that participants had begun norming. recommendations to improve productivity year 1 four themes emerged from an analysis of recommendations to improve productivity: reduce administrative tasks, equity in workload, effective and efficient communication/action-driven meetings, and efficient/userfriendly data/information management. the focus of these themes was on implementing protocols and practices that were perceived as linked to successful trainee and research outcomes reduce administrative tasks participants reported a need to reduce administrative tasks. for example, participants stated that there needed to be a stronger focus on the “success of our trainees [by] providing [and supporting] training. excessive administrative demands such as reports” were viewed as a distraction to that goal. equity in workload participants expressed considerable concern about equity in workload. although they observed a practice of shared leadership, several reported that not everyone was “pulling their weight.” this was exemplified by relevant core members who did attend scheduled conference calls or complete assigned tasks, and neglected to notify group members beforehand. others remarked that “productivity would be improved by greater focus on action items during meetings—what will be done, by whom [specifying the] due date and improved follow-through.” notably, “inequity in workload completion, is beginning to affect the team outcomes and needs to be resolved.” unsurprisingly, there is a greater “focus on process and less on outcomes” which is likely to “affect the sustainability of the center [and] needs to change if we want to be successful.” some participants suggested that “meeting agenda items [needed to focus] on short-term goals as well as longer-term goals [to] support productivity that is proactive rather than reactive.” one participant pointed out that [we] “have been in crisis mode for too long and need to get more proactive.” this participant recommended aligning meeting agendas with the work-plan presented in the grant timeline, creating a “check-in” regarding progress made for each aim, and establishing “due dates for all cores and projects would improve proactive productivity.” along the same line, participants pointed out that “most of the submissions [such as required reports] are being done last minute, which reduces the quality of assessment.” to remedy this, a participant suggested preparing documents “at least a week prior to the deadline so that other group members [could] provide their feedback.” effective and efficient communication/action-driven meetings participants pointed out gaps in communication and asserted the need for effective and efficient communication guided by action-driven meetings. they asked for “better and more in time communication and [increased] reminders of grant requirements.” there was broad disagreement about the frequency of meetings. some called for “increasing the number of meetings so productivity could improve, since many topics cannot be covered in a single meeting and need follow-up meetings.” others suggested reducing “the number of meetings and rely[ing] more on email exchange.” collectively, participants pointed out there was an absence of awareness regarding the role and functions of core and projects. to remedy this, they suggested distributing “a monthly newsletter/update ... to feature progress as well as impediments and to share information” about the role and accomplishments of each core and project in a brief communication. similarly, some requested increasing clarity about the scientific projects and providing more guidance on “eligibility criteria for tissue [procurement] in order to carry out their scientific aims.” another suggestion pertained to identifying “who is responsible for tracking samples provided to investigators,” while one individual asked if this process was going to be “centralized or [assigned] per study.” another participant pointed out that, “we have little or no interaction with other cores and teams. we don’t know what kind of resources and services are available. if each core can provide a simple list of services and expertise, that will help.” along the same lines, another suggestion was to develop a “central contact liaison from each core, master calendar, [and] find an alternative solution to dropbox.” others opined that there seemed to be a lack of preparation for monthly meetings. excessively long agendas and lengthy discussions of each item were also regarded as impediments to productivity. sometimes i feel as if our core is not always prepared for monthly meetings. by that, i mean, it feels as though they are each considering agenda items for the first time and spend a lot of time discussing the pros and cons of the smallest decision in exquisite detail, when really by the time we are at the meeting this issue should be down to a couple of points in favor or against and the group should be making a decision one way or the other. sometimes important decisions don’t get finalized in the interest of time, [page 60] [qualitative research in medicine & healthcare 2021; 5:9724] article no nco mm er cia l u se on ly but i don’t know if that course of action really is in the interest of making the most of our time. efficient/user-friendly data/information management several participants expressed a need for an efficientuser-friendly data/information management. they identified the major issue as “file/data management” and reported the “difficultly managing documents, especially when multiple people need to review and edit the same document.” one recommendation was to “find an alternative solution to dropbox” and switch over to basecamp, regarded as a “more efficient platform for sharing tasks and for everyday communication.” year 2 during year two, three themes emerged from analysis of recommendations to improve the center’s productivity: lack of centralized workspace, lack of procedural governance, and inefficient work allocation. these themes referred to practices linked to effective project management practices, organizational governance, and effective internal communication as essential to improve productivity. lack of centralized workspace participants suggested developing a centralized workspace. they asserted that this platform would enable shared meeting minutes and facilitate better management of assigned tasks to track progress. for example, participants suggested documenting and circulating “action items” to ensure “that individuals are held responsible.” another participant proffered “building a task list with deadlines to keep track of outstanding/ongoing projects.” database management platforms such as a “productivitybased platform” or “platform designed for teams… such as slack or basecamp” were recommended as mechanisms to remedy this challenge. others suggested such an investment would enhance center productivity by “making it easier to find threads, exchanges, and documents.” lack of procedural governance a few participants indicated a lack of procedural governance and adherence to standard operating procedures (sops) hindered productivity. not adhering to meeting agendas was cited as an impediment to productivity. a desire to fix matters without necessary planning such as setting up processes “in the heat of the moment when faced with impending deadlines resulted in, things becom[ing] chaotic.” participants urged developing protocols “agree[d] upon beforehand … to ensure all are comfortable with them,” followed by “adherence.” inefficient work allocation several participants commented on the lack of efficient work allocations. central concerns were an incongruence between the percentage of time allotted to work on projects versus the actual time needed to complete tasks. some pointed out that “hiring of additional [personnel] to complete the work [which] would increase productivity.” another suggestion was “to engage more members for the core.” along the same lines, one suggestion was to utilize “students that are assigned to the core who want to be engaged in publications and [work] on projects … as it would also help alleviate the workload”. some participants reported that the frequency of redundant email communications and the number of emergency emails that “necessitate a 24-hour turn-around” was excessive and diminished their availability to spend time on “actual core or project scientific tasks.” one participant pointed out that a lack of or unspecified subject in an email thread coupled with “... different topics [that] are discussed in one same email, or a topic is discussed in an email trail that has a different subject,” made it challenging “to find exchanges [which then resulted in] repeated emails.” another participant suggested reducing the frequency of emergency emails and migrating “from email correspondence to a productivity-based platform like slack, basecamp ... so that communications can be organized by topic.” comparison between years 1 and 2 themes related to providing formative feedback and processes (characteristic of forming) for managing scientific projects were absent during year 2 suggesting that these activities had become normative. while exemplifying storming, participants often expressed dissatisfaction with administrative tasks such as the number of reports requested during year 1 while this was not apparent in year 2. while participants observed that year 1 efforts focused on the developing processes and protocols, typical of norming, a lack of procedural governance and adherence to sops, notable during year 2 suggested that participants had entered the stage of storming. participants’ comments over years 1 and 2 were similar. for example, year 1 suggestions to shift to a more efficient and user-friendly data information management system became more frequent in year 2. during this time, participants emphasized a need for more centralized workspaces to effectively manage tasks, share documents, and review communication exchanges. this concern was characteristic of norming. participants’ expression of increased concern about inefficient communication practices, unnecessarily frequent, redundant emails, and emergency meetings, are characteristic of storming. workload equity was a common theme during both year 1 and year 2. [qualitative research in medicine & healthcare 2021; 5:9724] [page 61] article no nco mm er cia l u se on ly evidence of active collaboration year 1 three themes emerged from an analysis of the evidence that demonstrated active collaboration among the care2 partners: shared responsibility/leadership, collaboration (4 subthemes: infrastructure resources, research projects, scholarship, and actualizing new projects) and cross institutional training. conceptually, themes denoted practices and processes aligned with teamwork. shared responsibility/leadership this theme was exemplified by a collaborative agreement among key investigators to rotate institutional leadership responsibility every four months. synergistic activities were exemplified by pec’s distribution of draft evaluation plans for all cores and research projects and their provision of formative feedback. others described the presence of teamwork as evidenced by “key investigators’ active collaboration in writing and submitting annual reports” and a willingness to engage beyond the initial scheduled meeting times, by “following-up in our next meetings or via e-mail.” collaboration evidence of this theme was demonstrated by sharing infrastructure resources, research projects, scholarship, and actualizing new projects. infrastructure resources was described as sharing technology across the universities and convening cross-institutional trainings, meetings, and meeting presentation submissions. key investigators’ cooperative “preparation of [the annual report], reviews, and submission” as well as “engagement in frequent phone calls, face-to-facemeetings, communication via emails and zoom meetings” exemplified collaboration. research project. participants describe the nature of their shared research efforts as center projects working together to ensure the completion of “sequencing, determining the sample size, and sequencing coverage depth.” others ensured that they obtained cells from uf and acquired a “modified version of a drug from famu.” research project leads guaranteed the timely receipt of “samples to famu to characterize and provide ffpe tissue blocks.” scholarship. collaboration in scholarship was evidenced by the dissemination through “conference presentations [and] publishing papers together,” submitting grant supplements and manuscripts while including members of different cores and projects as co-authors. actualizing new projects. this subtheme was described as the “potential for new collaborations” and an intention to identify new areas of research through cross university communication. participants mentioned that the center offered support for new lines of investigation by “submitting developmental research program (drp) applications.” cross institutional training evidenced of this practice was observed by “exchanging students across center institutions.” specifically, the center provided support for “famu students and faculty [to travel and] participate in research projects at uf and usc.” year 2 two themes emerged during the second year: increase in productivity and increase in training activities. increase in productivity participants were nearly uniform in sharing center successes. they highlighted the noticeable increase in the number of publications, grant submissions, and presentations as evidence of burgeoning productivity. “continued collaboration among core and project teams” led “to grants, presentations and publications.” additionally, “we hosted a virtual summit to promote research collaborations center-wide.” participants also noted the surge in “joint publications, poster presentations, group discussions, [and] seminar presentations by core leaders.” another key indicator of increased productivity was the generation of “new manuscript collaborations underway for various cores and research projects.” increase in training activities trainee engagement also increased in year 2 as more “trainees participated in community activities.” all of the project pis served as mentors to undergraduate and graduate students as well as to esis. additionally, training “included advisory planning committees, patient advocates, and organizations” that fostered program expansion. comparison between years 1 and 2 as expected during the first year of group team development and the stage of forming, participants focused on understanding available resources. consistent with the stage of norming, they identified requisite infrastructure to actualize collaborations. once these factors were identified, by year 2, team development rapidly segued to performing and producing outcomes, marked by increased publications, presentations, and grants. considering that change processes generally take three to five years, realizing an uptick in productivity within a bi-coastal institutional partnership is remarkable. strengthening collaborations year 1 three themes emerged from an analysis of how collaborations could be strengthened including calls: enhance workflow efficiency, forge a partnership identity, and strengthen collaborations. conceptually, these themes re[page 62] [qualitative research in medicine & healthcare 2021; 5:9724] article no nco mm er cia l u se on ly ferred to practices and processes perceived as integral to successful benchmark attainment. enhance workflow efficiency to enhance workflow efficiency, subthemes were suggestions to: provide advanced notice and clarity for grant needs, require timely email response, and post centerwide resource documents. advanced notice and clarity for grant needs participants asked for timely communication and reminders about grant report preparation requirements (i.e., how to format reports and present clearer expectations and details about when something should be completed). one suggestion was to ask pec liaisons to meet with each core/research project team at least once per quarter to identify requisite data/documents needed to evaluate progress towards benchmark attainment. timely email response. participants stressed the need to ensure timely responses. some called for a standing practice to “respond to emails within 24 hours (one business day).” others pointed out how failure to respond adversely impacted “evaluation processes” that resulted in lost opportunities for data collection from trainees and delayed or averted the “potential for scholarly dissemination.” garnering grant funding in a highly competitive field is often viewed as a stellar accomplishment. since our center received grant funding following submission of its initial proposal, this places us among few cpache centers to achieve such an accolade. post center wide resource documents. many of the participants requested making documents readily accessible and easy to locate by posting center-wide resource documents in a designated folder. among documents requested were: i) a master contact list with the phone numbers of all key investigators, ii) quarterly updates to a master list of project collaborators and potential mentors for trainees, iii) a list of the expectations for each core and for the overall center, iv) institutional irb approval letters for each partnership site, and v) a list of all evaluation activities and outcomes alongside care2 benchmarks. maintaining a running record of center outcomes was suggested to facilitate quarterly and annual reporting. forge a partnership identity others recommended forging a partnership identity by attributing outcomes to the center rather than by giving accolades to individual institutions. increasing efforts to document and publish educational outcomes that accrued from trainee to esi assessment of their program and mentoring experiences were mentioned to strengthen the partnership’s notoriety. several participants called for expanding the center’s research repertoire beyond its initial support for the prostate cancer and pancreatic cancer projects. one participant suggested applying experience from pancreatic cancer to prostate cancer to access fresh prostate cancer cells/tissue and seeking some additional funding to make our program projects stronger. others recommended increasing the “collection of samples,” “identifying topics of interest among researchers,” or “specific projects that have value to all involved.” another suggestion was that lead core members “become better acquainted with investigators at the other two sites.” strengthen collaborations suggestions aimed at strengthening collaborations pertained to infrastructure concerns, resolving center problems, and data collection. participants asserted that there was a need to foster equality in partnership activities. they recommended establishing a process to ensure equitable contributions and implementing action plans to resolve circumstances when this is not happening. they advised strengthening the infrastructure by scheduling meetings to “ensure findings are shared with the administrative core and other cores as needed” and holding more “face to face interactions” and “brainstorming sessions.” others recommended “fostering authentic conversations to address valid concerns when things are not working” to ensure that problems impacting center work would be addressed in a timely manner. setting aside time for “separate meeting time to address problematic concerns” was recommended to ensure that special circumstances received appropriate attention to avert distractions from the business that needed to be discussed during regularly scheduled meeting. they offered suggestions to reduce participant survey burden by ensuring that trainee baseline measures were completed during onboarding. year 2 during year 2, two themes emerged from analysis of how to strengthen collaborations, strengthen collaboration and address conflict resolution. subthemes for strengthen collaboration included promote cross core-research project contributions, increase intra-institutional collaborations networks and authorships, and establishing opportunities for the intra-institutional engagement of msi trainees. strengthen collaboration “strengthen collaborations” refers to identifying practices that would promote, encourage, and support continuous integration and collaboration throughout the center. promote cross core-research project contributions. participants suggested increasing the frequency of interactions between cores and research projects to augment contributions to each other. additionally, participants noted that adopting effective collaboration principles and practices such as fostering “mutual respect”, working as a “center-based team rather than individuals” and implementing team-based strategies would encourage “crossteam collaboration”. one participant stated that [qualitative research in medicine & healthcare 2021; 5:9724] [page 63] article no nco mm er cia l u se on ly collaborations can be strengthened by effective communication, building trust, ensuring accountability, understanding each other’s role, and outlining expectations in the beginning. i believe sharing experiences and expertise can also assist in strengthening collaborations as everyone has something to bring to the table. having “more discussions amongst projects” [beyond] “a single meeting was recommended to strengthen collaboration” and as a mechanism that would encourage “brain-storming.” one recommendation was “to schedule a center-wide meeting in addition to [the] annual investigator meeting . . . exchange and discuss findings” through a half-day retreat. these suggestions were grounded by a hope that such meetings would facilitate the emergence of new and innovative ideas and foster new collaborations. other suggestions to strengthen collaborations were to “[write] grants together [that would] benefit our partners [and to develop] a mini grants program [to provide] funding to partners that would extend [the cores’] activities.” increase intra-institutional collaborations networks and authorships. participants also suggested increasing intra-institutional collaborations networks and authorships. participants remarked that there was an interest in developing future grant proposals and publications. additionally, one participant suggested having “more opportunities for research summits or symposium.” increase intra-institutional engagement of msi trainees. participants offered suggestions for expanding the pipeline of future cancer health disparities researchers. to address this goal and further strengthen collaboration across the center, one participant felt it was important to establish opportunities focused on developing a more “structured mechanism [for msi trainees] to engage with cancer researchers” at the partner institutions. address conflict resolution regarding the theme of addressing conflict resolution, participants suggested reinforcing sops to ensure organizational governance. they also commented that sop adherence could indirectly foster center benchmark achievement. some participants emphasized the importance of conflict resolution and pointed out the essential role of sop adherence. one participant recommended that conflict resolution could be achieved by “a more detailed path for resolving conflicts” articulated within sops. another participant suggested that “continuous improvement principles need to be followed in every activity.” this participant suggested listening to concerns expressed and then taking steps to make improvements. this individual emphasized the importance of acknowledging others’ observations stating that, “if one expresses a challenge, address and discuss it with the team members, and adopt the appropriate solution to make it better.” comparison between years 1 and 2 the theme of enhancing workflow efficiency identified during year 1 was not mentioned during year 2. representative of norming, participants expressed the importance of collaborative interactions within cores and research projects. similarly, they also suggested increasing intra-institutional networks and authorships. this observation underscored researchers’ understanding that strengthening collaborations is valuable to the successful benchmark achievement. during years 1 and 2, while exemplifying norming, participants continued to stress the importance of expanding the center’s research repertoire. engaging msi student trainees and addressing conflict resolution to strengthen collaborations were new themes that arose in year 2, perhaps signifying participant recognition of their integral connection to the continuation of performing. benchmark attainment at the inception of funding for this center, researchers had two publications. by the end of year 2, the center had produced 14 publications and 103 presentations, funded three projects, submitted 13 grant proposals, and received nine grant awards, had trained 63 urms students and esis, and had received 10 other awards. the summary of benchmark attainment of this center provides a context for understanding how collaboration among interdisciplinary science teams may impact its productivity. discussion in this study, we used qualitative inquiry to provide a unique and nuanced level of insight that cannot be afforded by the sole use of statistical analysis. we codified team scientists’ written responses to open-ended survey questions to assess their perceptions of collaboration effectiveness within an msi-pwi triadic research center partnership. the findings offer discernment into their feelings, beliefs, and actions relative to interdisciplinary, multi-university collaborative research endeavors. building a contextualized real-time understanding for how and why team scientists perceive collaboration effectiveness and subsequent responses may augment the rate and pace of future center productivity as we use these findings to reify and normalize team development processes.8 after all, we cannot improve that which cannot assess or understand. specifically, the findings helped identify practices that are working optimally and those which are not supporting grant outcome attainment and illuminated how well protocol and policy supported the center’s aims. optimal practices many of the procedural processes, such as shared leadership responsibility, scheduled meetings, and fre[page 64] [qualitative research in medicine & healthcare 2021; 5:9724] article no nco mm er cia l u se on ly quent communication effectively served participants’ needs for sharing information. the use of zoom technology, the primary mode of communication, may be useful for some project outcomes, such as developing new tools or methods, yet for other initiatives, this venue may not be advantageous for team scientists.22,23 a sense of teamwork, camaraderie and mutual respect was described as characteristic of center interactions in year 1, but not during year 2. in year 1, participants reported that shared leadership was evidenced in the center’s infrastructure, across research projects via triadic scholarship, and cross institutional training. by year 2, their responses seemed more nuanced. evidence of increased publications and presentations, grant submissions, training activities, and internal documentation of benchmark attainment supported their perceptions. consistent with the literature, our finding showed that scientific collaborations that span organizational (i.e., academic departments), geographic,2,24-26and institutional boundaries 2,24-28 generally enhance research impact. our findings also support previous evidence that diversity (i.e., disciplinary expertise, gender, rank, race, and ethnicity) among members of a science team has certain advantages.25 however, we did not directly assess or find as other have reported, i.e., that ethnic homophily was associated with increased likelihood of coauthorship.29-30 practices that necessitate improvement during the first year, participants remarked that there was a need to ensure equitable individual contributions among all core/research project investigators. by the second year, this issue was not mentioned, suggesting that perhaps resolution had been achieved. also, during the first year, participants recommended aligning meeting agendas with the work plans in the grant proposal and checking to ensure that proposed activities were accomplished. during the second year, their responses concerning the challenges impacting center-wide work were more specific. they reported a lack of access to shared documents and procedural governance. others have reported the positive effect of knowledge sharing, information acquisition, and information dissemination on team learning and team performance.31 participant concern about a lack of access to center-wide information is supported by previous findings. coordination, communication, trust, conflict, shared goals, and the availability of resources play crucial roles in team effectiveness and may be central to mediating team science productivity and impact.31-32 a lack of faceto-face meetings and conference attendance opportunities within the center may have limited the success of longer distance collaborations. such venues may be critical for inspiring new collaborations.33-34 participants described the burdens associated with too many meetings and emergency emails. conversations with the multiple pis revealed that unforeseen funding agency requests unwittingly to contributed to the participants’ perceptions of feeling overloaded by persistent and untimed requests. during partnership meetings, the multiple pis stressed the importance of supporting msi faculty through co-authorship and asserted that this was critical to fortifying the center’s identity as an entity rather than three separate institutions. the center’s competition for full and pilot research awards forged collaborative research projects across the partner institutions. to ensure the sharing of center-wide announcements in a timely manner, institutional coordinators now send important reminders using the calendar function. as cummings et al. noted multiuniversity research centers that use fewer coordination mechanisms yield poorer outcomes.32 they may encounter an initial lag in productivity compared with other research groups.35 coordination behaviors such as establishing the division of responsibility for tasks and knowledge transfer among researchers and institutions are predictive of project outcomes (i.e., new knowledge production, new tools, and training student outcomes).32 from a theoretical perspective, the findings mirror many characteristics associated with the stages of group development. most of the interactions reported in year 1 are characteristic of forming and norming. year 2 interactions align more with storming, norming, and performing. the movement between these stages was variable, yet typical of group development, while participants moved in and out, and back again to various stages. it takes time for team scientists from various training paradigms and disciplinary expertise to find commonalities, and to engender mechanisms that support collaborative work. there can be little doubt that bringing together team science researchers who have varied personalities, preferred work habits and modes of communication, and work in settings characterized by diverse institutional missions would instantaneously find harmony in interdisciplinary teams. benchmark attainment across the center was expected to ensure continuous nih funding. meeting annual productivity objectives depended on the totality across the center rather than expecting each of the shared workgroups to produce the same number of each. the availability of site-based, lab-related resources and personnel to generate data as well as faculty and trainee commitment to the center likely impacted the development of products, publications, presentations, funded projects, grant submissions and awards, the number of urms student trainees and esis, and other awards. faculty/trainee effort was influenced by institutional willingness and ability to provide faculty release time from other academic responsibilities, such as teaching, to dedicate time to center research projects, manuscript development and conference presentations, and towards providing mentored assistance to trainees. in that this center has moved from two publications at the start of the grant to achieving noticeable benchmark attainment of 14 publications by the close of [qualitative research in medicine & healthcare 2021; 5:9724] [page 65] article no nco mm er cia l u se on ly year 2 is testimony to their diligent efforts as they continue towards building more cohesive teams. these findings may assist newly created u54 cpache centers, by informing them of issues that may hinder collaboration and productivity and by suggesting processes that can be implemented to ensure mutual benefits to msis and pwis alike. a concise set of strategies for multiple principal investigators is provided (see table 2). over time, team science members are likely to develop a shared culture grounded by a negotiated set of norms and values that support and constrain members’ behavior.4 we recommend that funded center researchers implement repeated evaluation to assess team scientists’ perceptions of collaboration effectiveness via qualitative or quantitative methods. specifically, for this center, we recommend repeating data collection near the end of years 3, 4 and 5 funding to determine if these findings were representative of the initial stages of partnership building. study replication may allow participants and team scientists to see if offering an awareness of temporal findings leads to change in communication practices. ideally, evaluative measures should be administered over the entire course of multi-year initiatives and across multiple sites simultaneously, including at the beginning, their near-term, and later phases. for prospective studies, we recommend offering participants a primer on team science competencies and assessing the relationships between their knowledge of team science competencies, collaboration, and productivity. in recognition of a paucity of literature on science team diversity, particularly when there is considerable cultural, national, and racial/ethnic diversity, we recommend future investigation.10 as shown here, how individuals perceive teamwork effectiveness is likely to impact their productivity. assessing the perceived effectiveness of collaboration of teambased science research, while challenging and labor-intensive, is crucial to ensuring that the investments proffered by grant funding result in research centers achieving their programmatic goals. more importantly, it has the potential to advance our understanding regarding how well an investment in training has resulted in the anticipated outcomes.10-12 an in-depth analysis of individuals’ collective experiences can advance knowledge regarding how science teams across a full range of profiles and contexts can be maximized. assessing the presence, or lack thereof, of team competencies was a not a focus of our research initiative. moreover, this study includes only two years of data. thus, we invite readers to interpret the findings while bearing this in mind. determining if requisite team competencies are enacted or if participants’ normative institutional cultures are aligned with team science characteristics are variables that future researchers may wish to investigate.10 we note that the findings are temporal and limited solely to those who participated in the online survey. we cannot determine if the findings are representative of the views of individuals who declined participation. moreover, we cannot determine reasons for their non-participation. the use of convenience samples in a study of a single program is another limitation of this study. pre-definitions of the terms “productivity” or “collaboration” were not provided in the survey. however, expectations for “productivity” and examples of “collaboration” were discussed in every written and verbal communication. we have ample reason to believe that the center participants understood these terms. nonetheless, we recognize that our assumption represents a potential limitation of this study. conclusions the first two years of any partnership are inherently impacted by unforeseen challenges that are made more complex by institutional cultural differences and diverse personalities among team scientists (biomedical and social scientists, clinicians, and community health educators) whose background, experience, and training are often influenced by dissimilar paradigms. expending effort to qualitatively assess collaboration effectiveness, while perhaps laborious, offers an opportunity to take corrective action, to foster productivity by building an understanding of issues arise, and to strategically minimize the deleterious im[page 66] [qualitative research in medicine & healthcare 2021; 5:9724] article table 2. guiding principles for msi-pwi partnership development. 1. ensure transparency across the msi and pwi by making accessible, via cloud application, all documents. 2. require equitable institutional commitment and accountability. hold regularly scheduled meetings, create and review checklist of tasks. identify and hold team members accountable for task completion. hold center-wide meetings quarterly to generate collaborations, share information, and address challenges. 3. establish transparency during communications. invite all leadership team members to articulate their needs, challenges experienced while working together, and encourage conflict resolution in real time. 4. develop mutually agreed upon benchmarks of attainment for scholarly products and dissemination and share on the center website. ensure this information is shared in a center-wide webinar and during regularly scheduled core and research project meetings. 5. communicate time sensitive deadlines using the calendar function. 6. frame the challenges and successes associated with team development as normative. 7. use the stages of group development as analytical framework to assess interactions and to guide formative changes. no nco mm er cia l u se on ly pact of team dynamics and relationships that do not serve grant aims or that might otherwise may sabotage them. the need to assess and cultivate an understanding of collaborative effectiveness through a qualitative lens of team development is not widely recognized, yet the findings in this study support the merits of its application. it is unsurprising that participants suggested the center’s initial efforts were concentrated on processes and protocol. raising an awareness about what is working satisfactorily and identifying ensuing challenges might be helpful to investigators who suffer weariness when they do not recognize the inherently taxing impact of group (team) development. such insight may assist advancement towards increased team science cohesion and motivate investigator effort in garnering additional grants and publications. references 1. wuchty s, jones bf, uzzi b. the increasing dominance of teams in production of knowledge. science 2007;316:1036– 9. 2. jones bf, wuchty s, uzzi b. multi-university research teams: shifting impact, geography, and stratification in science. science 2008;322:1259 –62. 3. farrell m, schmitt m, heinemann g. informal roles and the stages of interdisciplinary team development. j interprof care 2001;15:281-95. 4. fiore sm, carter dr, asencio r. conflict, trust, and cohesion: examining affective and attitudinal factors in science teams. in salas e, vessey wb, estrada ax (eds.). team cohesion: advances in psychological theory, methods and practice. emerald group publishing limited, bingley; 2015:271–301. 5. tuckman bw. developmental sequence in small groups. psych bull 1965;63:384–99. 6. tuckman bw, jensen ma. 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(ed). organizational behaviour: understanding and managing life at work. harper collins college publishers, 1996. 8. warren rc, behar-horenstein ls, heard tv. individual perspectives of majority/minority partnerships: who really benefits and how? j healthcare poor underserved 2019;30:102-15. 9. davis aa, warren rc, behar-horenstein ls. review of hbcu and pwi partnership studies (1998-2018). j negro ed. 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[qualitative research in medicine & healthcare 2021; 5:9724] [page 67] article no nco mm er cia l u se on ly layout 1 introduction in the united states, 5.2 million veterans (approximately one quarter of all military veterans) reside in rural communities. rural-dwelling veterans disproportionately experience a larger mental health burden and poorer mental health outcomes than veterans residing in urban and suburban communities.1 rural veterans can also face greater geographical, logistical, technological, and financial barriers to accessing health care services.1-3 the veterans health administration (va) plays a critical role in providing mental health treatment to veterans. the va serves approximately 3 million rural veterans, representing one third of va’s total enrolled veteran population.4 adequate mental health treatment has been defined in the va uniform mental health services handbook as attending at least eight sessions of evidence-based psychotherapy (ebp) or receiving at least two months of psychiatric medication coupled with at least four mental health treatment visits within one calendar year.5 however, barriers to accessing health care can make it difficult for rural veterans to achieve this institutional metric. for example, research has shown that living more than 25 miles from a va clinic is a strong predictor of failing to receive adequate mental health treatment.6,7 in addition, rurality has been associated with increased drop-out after one to two mental health visits.6,7 although the phrase “patient engagement” has become central to numerous health care models, including the va, the concept remains indeterminately defined across varying institutional contexts for the purposes of practice or implementation.8 in some cases, patient engagement has been operationalized to characterize treatment initiation, treatusing an adapted case study approach to understand rural veteran experiences in patient engagement and patient-centered care research kara a. zamora,1,2 traci h. abraham,3,4 christopher j. koenig,1,5 coleen c. hill,1 jeffrey m. pyne,3,4 karen h. seal1,2 1san francisco veterans affairs health care system; 2university of california san francisco; 3central arkansas veterans affairs health care system; 4university of arkansas for medical sciences; 5san francisco state university, san francisco, ca, usa abstract how to best engage rural veterans in mental health care is challenging and a topic of public health concern. rural-dwelling veterans experience greater mental health burden and poorer outcomes than their urban counterparts, making rural veteran engagement in mental health care a public health concern. in this article, we describe how institutional notions of “patient engagement” align with or diverge from rural veteran patient experiences of engagement in mental health care. using an adapted case study approach developed for our study, we detail the mental health care experiences of three rural-dwelling veteran participants. these case studies illustrate varied forms of mental health care engagement, including use of community resources and self-management activities, that might not be recognized by clinicians as contributing to mental health treatment. our findings highlight how critical gaps in institutional definitions of care engagement fail to acknowledge veterans’ experiences. correspondence: kara a. zamora, university of california san francisco, department of humanities and social sciences, 490 illinois street, 7th floor san francisco, ca 94143-0850, usa e-mail: kara.zamora@ucsf.edu ; kara.zamora@va.gov key words: case study research; patient engagement; veterans; rural health; mental health; patient-centered care research. funding: this research was supported by the health services research and development (hsr&d) branch of the us department of veterans affairs (vha create #12-083). the views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the us department of veterans affairs or the united states government. conference presentations: working analyses of this manuscript were presented at the conferences state of the art va rural health summit in washington, d.c. in 2016 and society for applied anthropology annual meeting in vancouver, b.c., canada in 2016. conflict of interest: the authors declare no potential conflict of interests. acknowledgments: the authors would like to thank our colleagues on the larger coach study team across california, louisiana, and arkansas, which includes: linda abadjian, phd; nyssa curtis, ba; michelle hamilton, phd; p. adam kelly, phd; nicole mccamish, ma; marie mesidor, phd; sonya sanders, ba; regina stanley, bs; mitzi mosier; amanda lunsford, ma; dan bertenthal, mph; yongmei li, phd; gary tarasovsky, bs; madeline uddo, phd; ana-marie urbieta, lcsw; jennifer manuel, phd. we would also like to thank the veterans and va and community health care providers who participated in coach, without whom this research would not be possible. received for publication: 23 march 2020. accepted for publication: 6 october 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:54-64 doi:10.4081/qrmh.2020.8977 [page 54] [qualitative research in medicine & healthcare 2020; 4:8977] qualitative research in medicine & healthcare 2020; volume 4:54-64 no nco mm er cia l u se on ly ment retention, or sometimes both.9 in other cases, patient engagement is conceived more broadly as a cognitive, behavioral, emotional, and social construct which fosters selfmanagement.10 these definitions represent only a few among numerous and diverse definitions of engagement in the health sciences literature.8 even more broadly, patient engagement has been characterized as a component of “patient-centered care”,11 defined by the institute of medicine12 as “care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions”. however, researchers, clinicians, and policy makers still lack an understanding of how patients themselves experience seeking or receiving mental health care, and how these experiences influence help-seeking for mental health concerns in both clinical and non-clinical arenas. here, we draw from the agency for research and health care quality’s (2017)13 definition of patient experience as encompassing “the range of interactions that patients have with [a] health care system, including their care from health plans, and from doctors, nurses, and staff in hospitals, physician practices, and other health care facilities”. understanding how patient experiences of mental health symptoms and help-seeking behaviors depart from institutional definitions of “patient engagement” and “minimally adequate treatment” is important given increased demands placed on clinicians to deliver patient-centered care.14 in addition, understanding how patient experiences depart from institutional frameworks of engagement is also important given increased expectations for patients with chronic illness to assume greater responsibility for self-management.15,16 in this study we sought to explore rural-dwelling veterans’ experiences of engaging in mental health care using a case study approach adapted for health services research (hsr), defined as a “multidisciplinary field of inquiry, both basic and applied, that examines access to, and the use, costs, quality, delivery, organization, financing, and outcomes of health care services to produce new knowledge about the structure, processes, and effects of health services for individuals and populations”.17 we utilized an adapted case study approach to conduct a secondary analysis of data from a larger clinical trial study conducted within the va.18,19 the purpose of our analysis was to explore important aspects of patient-reported experiences from the larger study and to examine new research questions that emerged during the lager study’s formative phase. to conduct the analysis reported here, we re-examined our interview data to address two research questions: i) how do individual veteran participants experience engaging in mental health care, and ii) how do veteran experiences of engaging in mental health care align with or depart from institutional definitions of engagement? we illustrate the value of a case study approach adapted to the needs of this secondary analysis through three descriptive qualitative case studies exploring how veteran participants described engaging in mental health care. we then compare how veterans describe experiences of engaging in mental health care with institutional definitions of “patient engagement” and suggest strategies for making the construct of patient engagement and patient-centered care guidelines more responsive to patient experiences. methods case study research methods are well-known research strategies in qualitative inquiry across disciplines in the social sciences.20-22 case study research can represent both a process of analysis and the product of an analysis20 and there is no single standard format for conducting or reporting case study research.23 typically, case study research explores a single case or multiple cases over time, drawing from in-depth data collection involving multiple sources of information (e.g., interview transcripts, observation notes, documents or reports, video or audio recorded materials) to produce a case description and case-based patterns or themes. individual cases can be seen as units of analysis, and what constitutes a case, or a unit of analysis, is determined within the specific context of a research study and becomes the basis for purposeful sampling.20 case study research methods are routinely used in health policy evaluation research24 and ethnographic research.25 numerous traditional methodological and analytical frameworks from the social sciences, including case study research, have been adapted to inform health services implementation efforts.26 to conduct the analysis described in this paper, we adapted the case study approach as we describe in detail below. clinical trial study we adapted the case study approach for use as part of a larger clinical trial study (vha project #12-083). in the formative phase of the larger study, we sought to explore barriers and facilitators to clinician-directed mental health treatment engagement through in-depth individual interviews with 37 veterans enrolled in predominantly rural va community-based outpatient primary care clinics.18,19 all study activities were approved by va central institutional review board (irb approval #13-45). participant recruitment we recruited veterans who were over age 18, received care at one of the va outpatient clinic study sites, and were within one year of a positive mental health screen or diagnosis as approved by our va irb protocol. we oversampled women and younger veterans (≤ 45 years old), since the va patient population is comprised of predominantly older (≥ 60 years old) and male (91%) veterans.27 the final sample of participants consisted of 37 veterans, including 27 male and 10 female veterans. nineteen veterans were [qualitative research in medicine & healthcare 2020; 4:8977] [page 55] article no nco mm er cia l u se on ly from louisiana and 18 were from california. approximately half of all participants (n=18) were over the age of 60 (table 1). preliminary results of formative phase a team of three qualitative researchers (koenig, abraham, zamora) developed and refined a semi-structured interview guide to elicit individual-level, cliniclevel, and community-level barriers and facilitators to clinician-directed mental health treatment engagement. the one-time semi-structured interviews ranged approximately 30-60 minutes in length. interviews were digitally recorded with participants’ permission, professionally transcribed, and uploaded into atlas.ti qualitative data analysis software. following each interview, the qualitative research team drafted a detailed, post-interview interim case summary.28 the case summaries were used to record descriptive data pertaining to environmental context, relational context, health care experiences, and self-care practices. one researcher (zamora or abraham) conducted a quality check of the summaries from their respective region (california or louisiana) to ensure analytic consistency. these summaries were the basis for the secondary analysis detailed below. during review of the interview transcripts, the qualitative research team noted that veteran participants described diverse experiences of engagement in mental health care. these experiences of engagement appeared to shift across the study cohort as veterans’ needs, preferences, and changes in access to services changed. for example, access to mental health services changed over time due to changes in availability of services (e.g., increased or decreased appointment availability) in their region, or as veterans’ preferences changed in favor of community-based resources rather than clinician-directed treatment. this initial finding prompted the lead author to return to the 37 interim case summaries and to review them in order to further explore individual veteran participants experience engaging in mental health care and how veteran experiences of engaging in mental health care align with or depart from institutional definitions of engagement. procedures for secondary analysis we decided to conduct a secondary analysis to answer the emergent research questions: i) how do individual veteran participants experience engaging in mental health care, and ii) how do veteran experiences of engaging in mental health care align with or depart from institutional definitions of engagement? to conduct this secondary analysis, we selected case study research, framed as “the study of an issue explored through one or more cases within a bounded system (i.e., a setting, a context)”.23 individual cases can reveal how multiple factors intersect throughout an individual’s life, and thus how conceptualizations of engagement can mean different things at different times for individuals. additionally, given the goal of making patient voices heard in patient-centered care efforts, preserving entire veteran narratives seemed imperative to our analysis. thus, in our study, we defined each individual veterans’ narrative as a case or as a unit of analysis, then took an inductive approach to systematically comparing the original 37 interim case summaries. throughout the inductive process of case review, the lead author conducted “open coding”29 of the interim case summaries, a type of coding that charmaz29 describes as examining qualitative data by breaking data into parts that enables analysts to examine and compare segments for similarities and differences. the goal in open coding is to “remain open to all possible theoretical directions suggested by interpreting the data”.29 during open coding of the case summaries, the lead author identified several factors which shaped how veterans managed and conceived of mental health care. this resulted in the development of an original set of inductive codes, defined as: i) transition experiences from military to civilian life the transition period between initial separation from the military and reentering civilian life, often marked by personal challenges such as reconnecting with family or entering the civilian workforce; ii) turning point experiencesa an experience, event, or awareness that prompts changes to the direction of a trajectory over the long term such as life events, positive or negative mental health treatment experiences, or changes in mental health symptom severity;30 iii) trusted persons individuals who hold the trust of and play essential roles in a veteran’s mental health care engagement, including family members, institutional professionals such as social workers, or fellow veterans; and iv) selfmanagement activities any non-clinician-directed activity or modality that an individual engages in to support their well-being, such as gardening or hiking, or community activities such as attending church. the lead author discussed these codes with the larger qualitative research team, which reviewed the case sum[page 56] [qualitative research in medicine & healthcare 2020; 4:8977] article a our use of “turning point” is drawn from its conceptualization in the lifecourse approach.30 table 1. participant demographic information louisiana california total (n) (n) (n) gender male 16 11 27 female 3 7 10 total 19 18 37 age 18-30 4 3 7 31-50 4 4 8 51-70 11 11 22 no nco mm er cia l u se on ly maries to validate all proposed codes, code definitions, and their application to the data as being able to capture key aspects of veterans’ experiences across a diverse set of participant experiences. importantly, this inductive coding process helped to determine key domains relevant for gaining insight into potential divergences between veterans’ experiences and institutional definitions of patient engagement. these codes guided the formation of a framework for exploring veterans’ descriptions of the diverse forms of mental health care in which they engaged and for developing the template for presenting the three veterans’ case studies in this paper. purposeful sampling for adapted case study approach the development of the inductive codes informed the purposeful sampling process used to select the three indepth cases described in the sections below (figure 1). to purposefully sample individual cases for further analysis,23,28 the first author drew from the example of widelyused sampling typologies in case study research such as the folk-urban continuum in sociology20 and the neuroses-topsychoses continuum in psychology20 to construct the continuum of “actively participating in clinician-directed treatment” to “no engagement in mental health treatment” that provided the parameters for sampling. the three veteran cases presented in this paper represent one of the following points along a continuum of mental health care engagement observed among the larger sample of study participants, including: i) engaging in self-directed informal mental health care, ii) opting for both clinician-directed treatment and self-management activities, and iii) complete disengagement from clinician-directed mental health treatment. our objective in developing the case studies was to achieve depth and complexity rather than representativeness or statistical generalizability.28,31 thus, the cases were generated as illustrative coordinates along the continuum, versus as a complete set of categories.20 the cases illustrate how each veteran’s conceptualization of engagement in care unfolded in different ways. after purposively selecting three cases, the lead author returned to the interview transcripts to ensure that each case contained sufficient richness of detail to illustrate different experiences of mental health care engagement and to explore the primary research questions of how ruraldwelling veterans might experience and seek mental health care. throughout this stage, the lead author used the inductive codes first as a guide to selecting passages from the interview transcripts and then to organize the presentation of data. throughout case review and data analysis, at each step, the lead author reviewed the original interview transcripts in addition to the interim case summaries to ensure the quotations were correctly contextualized. lastly, veteran participants were given pseudonyms to protect their identities. ultimately, the goal of developing the cases was to illustrate veterans’ experiences of engaging in mental health care by describing how they sought help, or didn’t, across various settings. this approach offers unique insights into how individual veterans’ contexts helped shape their experiences of engagement. more broadly, we aimed to explore how veterans addressed diverse constraints to accessing mental health treatment, such as geographical and bureaucratic barriers, among others, to prompt a wider-ranging inquiry into how patient engagement and patient-centered care guidelines in clinical settings might become more responsive to patient experiences. results in the sections that follow, we used the inductive codes as a template for structuring the three cases of nicholas, samuel, and george (pseudonyms) to examine how each veteran’s experience of engagement in mental health care both aligns with and diverges from the va’s institutional definitions of patient engagement. nicholas: engaging in self-directed informal mental health care background. nicholas is a 27-year-oldoperation enduring freedom/operation iraqi freedom/operation new dawn (oef/oif/ond) army veteran who is native to the west coast. during his time in the military, nicholas served as an infantryman and was deployed to the middle [qualitative research in medicine & healthcare 2020; 4:8977] [page 57] article figure 1. secondary analysis process. no nco mm er cia l u se on ly east. after returning home from the military, he lived and attended college in a town in a rural region of california. transition experiences from military to civilian life. in the year after nicholas first separated from the military, he embarked on an extended backpacking and camping trip with his dog along the pacific coast. he converted his truck into a camper, spent much of his time alone, and preferred this way of life even for a period of time after enrolling in classes at a university in the region. nicholas found transitioning from military life back to life as a civilian challenging. he noted that many of his relationships suffered during this period, as illustrated in the following quotation: pretty much all of my relationships were destroyed. whether it be my girlfriend or my friends or my family. it was just they didn’t know what to do. they didn’t know how to reach out. i don’t want to blame them for that, but they didn’t know what to do about it. thus, his relationships suffered as a result of friends and family not knowing how to support or help him during this transitional period. nevertheless, instead of seeking help for his mental health concerns, nicholas waited to seek treatment. he described some of the reasons for his hesitation in the following passage: “it was distrust, i guess... i didn’t trust that they could actually help me. i didn’t know the services they offered and i didn’t know if i could trust them to treat me rather than lock me up”. in short, both a lack of knowledge regarding the resources available to him and a lack of trust in the possible outcomes of reaching out for help were barriers to initiating mental health treatment for nicholas. turning point. although he had already been experiencing nightmares and managing his symptoms on his own, he also increasingly began experiencing flashbacks and intrusive memories while awake. he stated: i was having a lot of problems. i was hallucinating, hearing things. i didn’t even need the medication. it was without being on it… memories were being recalled at invasive times. it was just invasive memories and sometimes they’d be set off by triggers; either smells or certain stuff would trigger them. that’s when i knew i was having a big-time issue. initially, to manage these experiences, nicolas began drinking heavily and eventually received a dui. this critical juncture prompted him to seek clinician-directed mental health treatment for the first time. nicholas recounted the state of internal crisis he was experiencing when he finally arrived at a clinic to seek help, stating: “i ended up going in and i remember even the first day when they checked me i must have looked super calm on the outside but when they checked my vitals they were just off the charts. my pulse rate must’ve been well over 100”. unfortunately, nicholas’ initial mental health treatment experience was not positive, as he was prescribed medications that made him feel disoriented and “like a robot”. he recalled that as a result he became reluctant to re-engage in clinician-directed mental health treatment, stating: i used to see a mental health professional, but i haven’t done that in a while… i kind of avoid it. i’ll just admit it. i avoid it… the last thing i want is to be prescribed medication at this point because i’ve already tried doing that several times and it just doesn’t make me feel right. hence, negative early clinical experiences ultimately led nicholas to become averse to taking psychiatric medications, and reluctant to place his trust in clinician-directed mental health treatment. trusted person. despite nicholas’ negative early mental health treatment experiences, he recognized a need for ongoing support for posttraumatic stress disorder (ptsd). to meet his needs, he chose to opt out of clinician-directed mental health treatment and instead initiated an informal care relationship with a trusted person at the university he attended. nicholas described this trusted person and their relationship as follows: there’s a lady on our [university] campus that runs the veteran’s office. she has a degree in psychology, but she’s also a social worker... she’s like my own, personal shrink, i guess you would say. i come in and i vent, and she says within the past couple of years she sees i’ve been mellowing out compared to when i first arrived. although nicolas’ trusted person had a background in mental health treatment, she did not formally act as a mental health provider or deliver evidence-based treatment in a clinical setting. thus, by choosing to engage with a trusted person rather than a clinician, nicholas redefined how and where he would engage in mental health care on his own terms. he further described his relationship with this trusted person in the following way: it’s informal and that’s kind of what i like. i like to be able to walk in. the whole appointment process for mental health stuff, like getting an appointment, walk in, and sometimes i’m not comfortable. i’m trying to figure out the person i talked to and the thing is… if [a veteran doesn’t] really feel like they know the person then you don’t really trust the person. here, nicholas described various constraints he encountered to engaging in clinician-directed mental health treat[page 58] [qualitative research in medicine & healthcare 2020; 4:8977] article no nco mm er cia l u se on ly ment (e.g., the formal process of scheduling appointments, building trust with a clinician) as factors that contributed to his reluctance to re-engage in treatment. having had prior negative experiences, nicholas found a way to establish an alternative form of care. self-management. nicholas also discussed engaging in self-management activities to manage his mental health in his everyday life. he routinely engaged with nature in the region in which he lived through mountain biking, trail running with his dog, hiking, and camping. in particular, he noted receiving a dui as what prompted him to start mountain biking more, stating: “one of the big things that i ended up doing was, well, part of it was brought on because i got a dui. i ended up mountain biking a lot more”. he also highlighted liking to “work with his hands” and described spending time working on cars. in addition, nicholas described traveling to get tattoo work done by an artist with whom he shared a close relationship, and characterized getting tattooed by this artist as a part of his healing. these activities represented additional aspects of what nicholas considered to be engaging in mental health care, even though these activities would not typically be recognized by health care providers as mental health treatment. case conclusion. nicholas’ description of his own efforts to define engagement in care on his own terms illustrates his experience navigating the constraints he encountered while seeking mental health treatment. for this veteran, mental health ultimately took place outside of clinical settings, shifting the setting of care from settings where clinicians and established institutional processes held greater authority to settings where he possessed greater autonomy for making decisions about how he wanted to engage in mental health care. for nicholas, engaging in mental health care meant engaging in selfdirected informal mental health care. however, many of the community and self-directed activities he engaged in remained largely unrecognized by formal health care providers and thus were likely not captured in his va electronic medical record, highlighting a gap between an institutional definition of engagement in mental health care and a veteran’s experience of engagement in mental health care. samuel: opting for both clinician-directed treatment and self-management activities background. samuel is a 52-year-old career navy and gulf war veteran who is native to the state of louisiana. samuel served as an air crewman for the majority of his career in the navy, and spent over 7 years serving overseas in the middle east and in europe. since retiring from the military after completing 20 years of service, he worked in civilian jobs until he was laid off. he eventually decided to return to school with his wife’s encouragement. transition from military to civilian life. over the 20 years that samuel spent in the military, he recalled mental health as a topic that people often didn’t discuss for fear of losing security clearances and other privileges, fear of losing access to certain jobs, and even fear of being medically or dishonorably discharged. he described these concerns in following quotation: you really can’t talk about stuff like that once you’re in the military because you don’t want to get no bad discharge or anything like that. so, you got to keep things regulated...if i didn’t say anything i’d be protecting myself… i wanted to do my 20 years [of military service]. i didn’t want to jeopardize that, you know? here, samuel described how while being an active service member, mental health status was something that should be concealed, which he referred to as “keeping things regulated”. he further noted how this long-ingrained attitude became a habit which he carried over into his post-military life. he stated that it took him several years after retiring from the military to mention his mental health concerns to his va primary care provider. soon after samuel retired from the military and returned to louisiana, the region was hit with hurricane katrina in 2005, a historic natural disaster for the region. hurricane katrina destroyed countless family homes across the gulf coast, including samuel and his wife’s home and his sister’s home in a nearby town, stating that his own home “got hit with 32 feet of water”. in contemplating what finally led him to seek mental health care, samuel described uncertainty about the root of his anger issues, depression, anxiety, and drinking, stating: i mean, just as far as the anger issues and stuff like that, not being motivated sometimes… i don’t know, i was in a few mishaps [in the military] and stuff… [t]his was in the 90s that i was involved with [the response for] that building that got blown up in [city]. couple issues. [i was involved in a] couple of plane crashes. i’ve seen a couple of my friends killed... i guess it could be a combination of stuff. even probably… coming back home. going through katrina and stuff… i was right here in my home here [when that happened]. samuel therefore attributed his mental health concerns to a combination of factors, including experiences while serving in the military and experiencing a major natural disaster after he returned home, highlighting the inextricability of social, historical, and structural factors in his experiences of health. turning point. samuel reached a critical juncture when his mental health issues began to affect everything in his life, especially his relationship with his wife. it was at this point that both samuel’s wife and his father, a fellow veteran, encouraged him to discuss mental health care with his primary care provider. in the excerpt below, [qualitative research in medicine & healthcare 2020; 4:8977] [page 59] article no nco mm er cia l u se on ly samuel recounted his initial experience discussing his mental health concerns with his primary care provider: i was talking to my doctor. explaining to him how i feel sometimes and losing interest in things. i really get angry a lot, too, you know? for whatever; i don’t even know what it would be for. then, just kind of having sometimes no control over myself. having trouble getting it together…everything was affecting my relationship with my wife and my home and even stuff when i had a job. in this segment, samuel recalled having felt out of control, as well as having been unable to pinpoint the source of these experiences. he also reflected upon how these factors negatively impacted his life during his visit with his primary care provider. after this visit, samuel’s primary care provider referred him to a mental health provider. following this, samuel began a series of counseling sessions at his local clinic and tried different medications with guidance from his new mental health provider. in the passage below, samuel described this experience: [i started talking to the mental health provider] to try to find out what was going on with me and to see if they could come to some type of a resolution or an answer–why do i get so angry all the time? then, after that, once i got on the meds and everything even keeled out i felt like, “well, i don’t really need to go back to talk to nobody no more”. after a period of trial and error, samuel and his mental health provider found a medication that helped keep him at an “even keel”. having successfully accessed multiple forms of clinician-directed mental health treatment, samuel made the decision to only maintain the form of treatment that aligned with his personal preferences: prescription medication. trusted person. samuel also had a trusted person who was critical in his decision to seek clinician-directed mental health treatment: his wife. not only did she encourage him to talk to his primary care provider about mental health care, but she supported him in re-engaging with their church community. samuel described how going to church with his wife benefitted his health, stating: “i just recently started going back to church with my wife. that’s been making me feel a lot better too, you know? calmed me down some, put things in perspective and order”. samuel also described how going back to church was not something he would have initiated on his own, stating: “i never would’ve took the initiative and went [to church] on my own… if my wife was going then she would ask if i wanted to go… i never did it on my own”. this illustrates the crucial role that samuel’s wife played in his engagement in care both in the clinic and in their community, highlighting the impact that the support of a trusted person can make in encouraging multiple forms of care across various settings. self-management. in addition to attending church, samuel cited playing guitar as an important self-management activity. he described how playing guitar “calms me down, and i got it lying next to my bed right now”. samuel recalled that what led him to play guitar was his initial desire to socialize with other veterans through organizations such as the veterans of foreign wars (vfw), stating: “[being with] people that i served with, too, you know? same time, same experiences and stuff like that. sure. that’d be a big help”. he soon realized, however, that much of the socialization at those organizations revolved around drinking, as he described in the following quotation: if you go down to [the vfw] all that’s going to do is lead to drinking, so i stay away from that drinking stuff… like when i first retired after the military, i went to a couple american legions out here and…i just lost interest in it…i didn’t want to be around all that mess. having weighed the benefits of socializing with other veterans at the vfw against the cost of putting himself at risk of drinking, samuel opted to play the guitar to manage his mental health, stating: “i did have a problem with drinking before but i got to leave all that stuff alone. yeah, i manage, i just play guitar”. the examples presented here illustrate how samuel navigated the risks and constraints present in some community settings (i.e., vfw) but not in others (i.e., church). through a period of trial and error similar to that experienced with a mental health provider, he ultimately chose to engage in care through a combination of cliniciandirected treatment and self-management activities that aligned with his own preferences for mental health care. case conclusion. samuel successfully engaged in mental health treatment at his local clinic, and his ongoing engagement through prescription medications fits the va institutional metric of engagement. he also engaged in alternative activities in other settings, such as attending church and playing guitar, as part of his broader notion of engagement in care. for samuel, engagement in mental health care took shape as opting for both clinician-directed treatment and self-management activities. like nicholas, however, samuel’s engagement in mental health care included activities that would not typically be captured by his health care institution’s definitions of mental health care engagement. this, again, highlights the limits to which approaches or modalities of care are ultimately recognized as contributing to mental health treatment and which are not. george: complete disengagement from clinician-directed mental health treatment background. george is a 67-year-old vietnam-era veteran who has lived “in the hills” in rural california for [page 60] [qualitative research in medicine & healthcare 2020; 4:8977] article no nco mm er cia l u se on ly over 20 years. after having resided on an isolated parcel of land with a partner for many years, he now lives alone and opts to rarely leave, preferring solitude to others’ company much of the time. transition from military to civilian life. during our interview, george did not discuss the branch in the military in which he served in or military occupational specialty (mos). rather, he described challenges related to transitioning back to civilian life after military service upon first returning from war as a young man. in contrast with nicholas and samuel who at least in part attributed their mental health concerns with military service experiences, george emphasized coming home from his deployment in vietnam as his major traumatic experience related to military service. he reflected on this period, stating: “i’m lucky if i didn’t end up in the hills, i would end up in prison… i didn’t do well when i came there… yeah, coming back was traumatic. and i lucked out. i mean, i’m in the hills... i spent 15 years homeless, so any place is really a good place in time”. in this quotation, george described how the experience of transitioning back to civilian life after being discharged from the military was “traumatic”. further illustrating the political climate of the era in which he served, george continued: “we weren’t wanted. the country didn’t want us; no one wanted us”. he felt fortunate to have ultimately ended up in “the hills” because life on his homestead offered him an alternative to the challenge of successfully re-entering civilian life. turning point. george’s first attempt to seek help from the va as a young veteran was prompted by challenges he faced transitioning back to civilian life. however, he was ultimately unable to access va care services despite his efforts and described feeling as though the va had given him the “run around”. this made him “walk away” from the va and clinician-directed mental health treatment – at least temporarily. over the 40 years that followed his initial attempt to access the va, george continued to try to access va mental health services during multiple life crises. each time, george said he could not get the care he wanted or needed despite his efforts and described feeling as though the va had turned its back on him and his vietnam-era comrades. eventually, george’s compounding feeling of betrayal constituted a turning point in his attitude toward seeking clinical care. even after successfully enrolling in va benefits and initiating primary care at a va clinic decades later in his 60s, george was reluctant to seek clinician-directed mental health treatment, stating: i’m not interested in talking to anybody anymore. i was interested when i was losing my family. i was interested when i was homeless. i was interested when i was having all these problems, and i didn’t know how to cope. now i’m not interested. there’s other people that need it. in this quotation, george described how he lost interest in trying to engage in clinician-directed mental health treatment after having failed to do so time and time again. george acknowledged that access to mental health treatment in the va is better now than it was when he first returned from vietnam, but still chose not to pursue it. in his opinion, there are other veterans who need access to treatment more than he does now. george further reflected on what he characterized as a generational shift in access, stating: “that’s what’s changing a lot for these new guys coming home. i’m glad to see it. they deserve it”. trusted person. several years prior to our interview, george met a woman who worked for his county’s social services at an outreach event in a nearby town. this social worker helped him document his military service-related ptsd and qualify for va benefits. in contrast to health care providers he had encountered during prior attempts to access va services, george characterized the social worker as “straightforward…and she didn’t break my trust”. he continued to meet with her for a period of time during which she helped him establish primary care at a nearby va clinic. however, as a result of prior experiences with the va and the perception that he could no longer benefit from mental health treatment, george elected to remain completely disengaged from cliniciandirected mental health treatment. instead, continued to manage his mental health concerns on his own, entirely outside of clinical settings. self-management. george preferred his own self-directed mental health care regimen, which included activities he considered to be restorative such as working the land on his homestead. he described this in detail during the interview: we [george and his former partner] got, like, seven different kinds of apple trees, pears, peaches, plums, 100 lavender plants inside the yard. man, there’s walls of lilacs. we got a front pond with fish in it, with a fountain that drops down into a lower one… and then goes to a weeping willow... we’ve created a paradise. in this quotation, george described how the result of the restorative work of “working the land” was the creation of the “paradise” that he calls home. he claimed that working the land “keeps me busy and wears me out. it’s amazing how much it restores the soul. you know, i don’t know how to explain it. it’s real”. here, george illustrated how the land both offered him an alternative to the typical [qualitative research in medicine & healthcare 2020; 4:8977] [page 61] article no nco mm er cia l u se on ly civilian life within which he struggled to reintegrate and an alternative approach to managing his mental health. another aspect of what george considered a part of his self-directed care was isolation from others. he lived alone at his home, which he rarely left. he felt uncomfortable being around people who lived in towns and cities and enjoyed the solitude, life outdoors, and living “six miles off the pavement” in a “different reality”. he described this in the following excerpt: “i might not leave here maybe once or twice a month. i don’t deal well with people. there’s no radio and television here. i can go weeks and never even talk to anybody—which is fine with me, because what i’m looking at is unbelievable”. in addition to working the land and solitude, george also noted occasionally playing cards at casinos and in tournaments with a friend who is a fellow veteran, and he believed that these social activities also contributed to his mental well-being. having noted the contrast between his preference for isolation and going to casinos, he commented: “i feel totally comfortable in a casino [with] the amount of security that’s in a casino… even though i got long hair, and a beard, and stuff, i always make friends with security”. thus, although completely disengaged from clinician-directed mental health treatment, george nevertheless considered himself engaged in his own forms of self-directed mental health care. case conclusion. george’s description of his efforts to engage in mental health care illustrates how a veteran who was unable to access mental health treatment at various critical points throughout his life found alternative ways in non-clinical settings where he did have access. in doing so, george was able to get his care needs met despite almost complete disengagement from clinician-directed mental health treatment. for this veteran, engagement in care took place through some activities that would be endorsed by clinicians (e.g., gardening) and others that would not typically be endorsed by clinicians (e.g., going to casinos with friends). even after a pathway to mental health treatment became available to him later in life, he elected to engage in care through his own home and social relationships. george’s story reminds us that individuals persist in their own self-management strategies despite repeatedly encountering social and institutional barriers to engagement in formal mental health treatment. discussion how to best engage rural veterans in mental health care is challenging and a topic of public health concern.1,2 currently, a critical limitation to adequately addressing this issue is how the concept of patient engagement has been defined by researchers, clinicians, and policy makers. in this paper, we used a case study approach adapted for hsr to explore how three rural veterans described experiences of engaging in mental health care, and how their definitions aligned with and departed from va institutional definitions of engagement. in each of the case studies, participants self-managed symptoms and responded to different challenges by engaging in activities that would not typically be considered mental health treatment, such as playing guitar, working the land, trail running, and engaging in community-based activities such as attending church. given the barriers that rural-dwelling veterans face in engaging in mental health treatment, it is imperative for va and individual clinicians to understand the constraints and preferences that might affect veterans’ decision-making around help-seeking for mental health concerns. factors that can impact individual veterans’ agency, access to, and engagement in different forms of care described by nicholas, samuel, and george include: the harms that veterans have experienced both during and after service, particularly after engaging in combat; the role of trusted persons; challenging transition experiences from military to civilian life; experiences of stigma against seeking mental health treatment, both during and after service; welldocumented bureaucratic and institutional barriers veterans have faced seeking va health care services; the broader political climate of the era in which a veteran served; and sharply varying degrees of available resources across rural-urban divides throughout the u.s. these broader social and structural contexts are also well-described throughout the health sciences literature2,32,33 and are crucial for health services providers to acknowledge given increased expectations for patients with chronic illness to assume greater responsibility for self-management. as va strives to improve patient engagement and patient-centered care, bridging knowledge and practice between institutional definitions and guidelines with veterans’ lived experiences can inform new patient-centered mental health interventions and outcomes. acknowledging and honoring veterans’ experiences of engagement in mental health care will not only help bridge knowledge gaps in this area but will also improve clinicians’ and health care institutions’ ability to care for individual veterans. in 2012, the va office of patient-centered care and cultural transformation was established to work with veterans, va leadership, health care providers and staff to bring about a cultural transformation away from a strictly biomedical model to include a more “personalized, proactive, patient-driven” approach. this more patient-centered approach has been implemented through the national rollout of the va whole health program which began in 2017. though not specific to mental health, these whole health programs encourage patients and providers to collaborate to establish health goals aligned with what matters most to patients.34 as such, re-conceptualizing a broader range of self-management activities as contributing to mental health treatment and recording these activ[page 62] [qualitative research in medicine & healthcare 2020; 4:8977] article no nco mm er cia l u se on ly ities in the va electronic medical record can be an important first step in aligning patient experiences and institutional definitions of mental health treatment, as well as encouraging engagement in care overall. future studies will need to assess mental health outcomes associated with engagement in more personalized care approaches. methodological and analytic approach the methodological and analytic approach outlined in this paper has both limitations and unique strengths. secondary analysis of qualitative data is typically conducted for the purposes of examining new questions which are closely related to or extend the primary study questions, validating or expanding findings from the original data.35 tate and happ35 outline an approach to conducting “exemplar” secondary analysis which accounts for practical advantage, data adequacy, passage of time, researcher relationships to primary study, informed consent of participants, and rigor of analytic approach. our secondary analysis met the criteria for “exemplar” secondary analysis in terms of: i) facilitating exploration of important aspects of patient-reported experiences from the primary study, ii) reducing participant burden for vulnerable patients by relying on existing data, iii) maximizing the utility of participants’ time investment and expertise, iv) allowing minimal passage of time between data collection and analysis (secondary analysis was conducted as the primary study was ongoing), v) integrating the qualitative research team in both the secondary analysis and the primary study, vi) recording an audit trail of methodology notes and analytic memos, and vii) holding regular meetings to establish credibility and dependability of findings. thus, although the analysis presented in the paper was not the original aim of the larger clinical study, our adapted case study approach rigorously and systematically produced rich data and results. our use of an adapted case study approach responds to typical constrains in hsr settings, namely, that researchers aren’t always able to conduct intensive, longitudinal or immersive research with participants. the adaptation of more traditional qualitative research methods in hsr, such as ethnographic research, has been influenced by the importance of generating findings in formats and within time frames when they can be used to inform improvements in care.26 in this study, we used an adapted case study approach because we had access to one-time, semi-structured interview data within the context of the formative phase of a larger clinical study. in contrast to more traditional case study research methods, we showed that researchers can re-purpose the narratively rich data from existing data sources to gain new insights about the target population that may lead to other important findings. these findings offer potential implications for both policy and care delivery, as well as support the development and implementation of an intervention. since there is no current standard for reporting case study research, our adapted case study approach offers a flexible guide or format that could be applied by other researchers. our adapted case study approach used an inductive coding process to guide our analysis, an approach that is unconventional for more traditional case study research and one that lends a unique strength to our study. other researchers working in hsr settings can similarly produce an analytic template generated from a coding scheme that emerged from inductive coding of pre-existing data to structure the development of case studies. finally, given the goal of making patient voices heard in patient-centered care efforts, in this paper we show how case study methods are uniquely suited to ensure that patients’ voices are heard in patient-centered research, contributing not only to the literature on qualitative research methodology but also to the growing bodies of literature on patient engagement and patient-centered care. references 1. wallace ae, weeks wb, wang s, et al. rural and urban disparities in health-related quality of life among veterans with psychiatric disorders. psychiatr serv 2006;57:851-6. 2. teich j, ali mm, lynch s, mutter r. utilization of mental health services by veterans living in rural areas. j rural health 2017;33:297-304. 3. fortney jc, burgess jf, jr., bosworth hb, et al. a re-conceptualization of access for 21st century healthcare. j gen intern med 2011;26:639-47. 4. us dept. of veterans affairs. rural veterans 2017. available from: https://www.ruralhealth.va.gov/aboutus/ruralvets.asp 5. us dept. of veterans affairs. uniform mental health services in va medical centers and clinics. vha handbook 1160.01; 2008. 6. harpaz-rotem i, rosenheck ra. serving those who served: retention of newly returning veterans from iraq and afghanistan in mental health treatment. psychiatr serv 2011;62:22-7. 7. seal kh, maguen s, cohen b, et al. va mental health services utilization in iraq and afghanistan veterans in the first year of receiving new mental health diagnoses. j trauma stress 2010;23:5-16. 8. barello s, graffigna g, vegni e. patient engagement as an emerging challenge for healthcare services: mapping the literature. nurs res pract 2012;2012:905934. 9. harpaz-rotem i, rosenheck ra, pietrzak rh, southwick sm. determinants of prospective engagement in mental health treatment among symptomatic iraq/afghanistan veterans. j nerv ment dis 2014;202:97-104. 10. barello s, triberti s, graffigna g, et al. ehealth for patient engagement: a systematic review. front psychol 2015;6:2013. 11. berwick dm. what ‘patient-centered’ should mean: confessions of an extremist. health aff (millwood). 2009;28: w555-65. 12. institute of medicine (us) committee on advancing pain research, care, and education. relieving pain in america: a blueprint for transforming prevention, care, education, and research. washington (dc): national academies press (us), 2011. doi:10.17226/13172 [qualitative research in medicine & healthcare 2020; 4:8977] [page 63] article no nco mm er cia l u se on ly 13. quality afhra. what is patient experience? rockville, md2017. last update: march 2017. available from: https://www.ahrq.gov/cahps/about-cahps/patient-experience/index.html 14. murphy ka, ellison-barnes a, johnson en, cooper la. the clinical examination and socially at-risk populations: the examination matters for health disparities. med clin north am 2018;102:521-32. 15. bodenheimer t, lorig k, holman h, grumbach k. patient self-management of chronic disease in primary care. jama 2002;288:2469-75. 16. phillips rl, short a, kenning a, et al. achieving patientcentred care: the potential and challenge of the patient-asprofessional role. health expect 2015;18:2616-28. 17. institute of medicine committee on health services research: training and work force issues. in: thaul s, lohr kn, tranquada re. (eds). health services research: opportunities for an expanding field of inquiry: an interim statement. washington (dc): national academies press (us); 1994. available from: https://pubmed.ncbi.nlm.nih. gov/22553896/ 18. abraham th, koenig cj, zamora k, et al. situating mental health work in place: qualitative findings from interviews with veterans in southeastern louisiana and northern california. health place 2017;47:63-70. 19. koenig cj, abraham t, zamora ka, et al. pre-implementation strategies to adapt and implement a veteran peer coaching intervention to improve mental health treatment engagement among rural veterans. j rural health 2016;32:418-28. 20. patton mq. qualitative research & evaluation methods: sage publications; 2001. 21. stake re. multiple case study analysis: the guilford press; 2005. 22. yin rk. case study research and applications: design and methods: sage publications; 2017. 23. creswell jw, poth cn. qualitative inquiry and research design. 3rd ed: sage publications, inc.; 2012. 24. gardner a. compendium of five case studies: lessons for interprofessional teamwork in education and work place learning environments 2011-2016. veterans health administration, affiliations ooa; 2017. 25. emerson am. strategizing and fatalizing: self and other in the trauma narratives of justice-involved women. qual health res 2018;28:873-87. 26. sobo ej. culture and meaning in health services research: an applied approach. new york, ny: taylor and francis; 2009. 27. us dept. of veterans affairs. va utilization profile fy 2016. available from: https://www.va.gov/vetdata/docs/ quickfacts/va_utilization_profile.pdf 28. miles mb, huberman am, saldana j. qualitative data analysis: a methods sourcebook. 3rd ed: sage publications, inc.; 2014. 29. charmaz k. constructing grounded theory (introducing qualitative methods series) sage publications ltd; 2014. 30. teruya c, hser yi. turning points in the life course: current findings and future directions in drug use research. curr drug abuse rev 2010;3:189-95. 31. malterud k, siersma vd, guassora ad. sample size in qualitative interview studies: guided by information power. qual health res 2016;26:1753-60. 32. finley ep. fields of combat: understanding ptsd among veterans of iraq and afghanistan. ithaca, ny: cornell university press; 2011. 33. mittal d, drummond kl, blevins d, et al. stigma associated with ptsd: perceptions of treatment seeking combat veterans. psychiatr rehabil j 2013;36:86-92. 34. us dept. of veterans affairs. whole health for life. transformation oopccc; 2017. 35. tate ja, happ mb. qualitative secondary analysis: a case exemplar. j pediatr health care 2018;32:308-12. [page 64] [qualitative research in medicine & healthcare 2020; 4:8977] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2019; 3:8254] [page i] i open this first issue of 2019 on a joyous note, which speaks about work that is rarely acknowledged, as well as why this work is so important to me and to our authors. it was sent to me as an e-mail from israeli researcher and bioethicist baruch velan, whose article appears in the issue, shortly after we corresponded about the second round of revisions that produced his final draft. he has, of course, given me permission to reprint this: dear mariaelena, i have been around for a while (i am 72 years old) and have had various experiences with publishing. the interaction with you was by far the best i had. you are probably aware of the notable criticism that is being directed nowadays toward the institution of peer reviewed publishing (rightfully). in your work as an editor, you are reinstituting trust in the scientific publishing system. you have demonstrated that the real aim here to create a fruitful interaction between authors editors and reviewers for the advent of science. for me personally, this was a new learning experience in a field that i am new to (not trivial at my age) and i am grateful for this. i will be glad to assist the journal in the future, my real expertise is in the field of vaccinology (public-authority interactions). baruch thank you, baruch. and thank you to the authors who continue to submit work to qrmh, and who work so patiently to attend to reviewers’ careful and often feedback and to my additional requests for revisions. sometimes, if we are lucky, this opens up conversations (on skype and phone!) that editors of more established journals would not have the luxury to have. in contemplating the connections between the five studies in this issue, and especially in considering the multimodal approach taken by johnson et al.,1 i cannot but attend to the fact that communication is mediation. this means that identities, health, healthcare, experiences, learning, stigma, practices (some of the subject matter taken up by the scholars in this issue) are accomplishments of language, voices, writing, bodies, gestures, in space/time continuums, and technologies in much the same way as telephones, twitter, and the computers from which we type our comments in support communities. they are resources for doing things together.2 for making, unmaking, remaking the universe we inhabit. our theoretical approaches are also mediation, for there is no view from nowhere,3 no pure seeing, and therefore we are not free from interpreting our data and making other speakers into subjects of study and what they tell us into data and those data into written texts to be circulated in conversation (or at least we hope). this is but brief introduction to five excellent pieces that deal with diverse topics: how instagram connects and thus pragmatically constitutes the experiences of women who undergo in-vitro fertilization; how the experiential learning model is involved in students’ understanding of coursework in ethics;4 the stigma and marginalization that low-income women in rural communities in the midwest endure with respect to their weight;5 the collaboration between researchers and practitioners recommended by britt and englebert6 to overcome stigma experienced by patients suffering from ibd and finally, velan and pinchasmizrachi’s7 phenomenologically informed examination of the psychological challenges of transition from the orthodox jewish community into a novel social context. i invite our readers as much as the authors to consider how the experiences (including their own as researchers) are always mediated by communication, and how this consideration may allow for technologies of metacommunication and new spaces for conversation. perhaps this brief commentary is a start. editor’s introduction: research as mediation mariaelena bartesaghi department of communication, university of south florida, tampa, fl, usa correspondence: mariaelena bartesaghi, department of communication, university of south florida, cis 1040, 4202 e. fowler ave, tampa, 33620 fl, usa tel.: +1.813.974.2145 fax: +1.813.974.6817. e-mail: mbartesaghi@usf.edu received for publication: 26 april 2019. accepted for publication: 29 april 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright m. bartesaghi, 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:i-ii doi:10.4081/qrmh.2019.8254 qualitative research in medicine & healthcare 2019; volume 3:i-ii no nco mm er cia l u se on ly references 1. johnson b, quinlan mm, pope n. #ttc on instagram: a multimodal discourse analysis of the treatment experience of patients pursuing in vitro fertilization. qual res med healthc 2019;3:7875. 2. jones r. spoken discourse. london: bloomsbury; 2016. 3. nagel t. the view from nowhere. new york: oxford university press; 1986. 4. behar-horenstein ls, zhang h. clinical translational students’ perceptions of research ethics coursework: a case study. qual res med healthc 2019;3:7943. 5. hughes k, bombak ae, ankomah s. experiences of weight-related stigma among low-income rural women of higher weights from the midwestern united states. qual res med healthc 2019;3:7832. 6. britt rk, englebert a. experiences of patients living with inflammatory bowel disease in rural communities. qual res med healthc 2019;3:7962. 7. velan b, pinchas-mizrachi. health concerns of young israelis moving from the ultra-orthodox to the secular community: vulnerabilities associated with transition. qual res med healthc 2019;3:8051. [page ii] [qualitative research in medicine & healthcare 2019; 3:8254] editorial no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2020; 4:9073] [page 65] introduction the relationships between a lifestyle involving problematic drug use and violence are well documented1 and complicated by many factors including the illegality of drugs and the development of drug use and offending in a common causal nexus.2 much research and writing about drugs and violence focusses on their impact on individual victims and wider communities. in contrast, this paper is about the impact of violence and other trauma on the life stories of individual problem drug users.3 it follows on from a previous paper using the same life story data set to examine the impact of childhood trauma on the development of drug injecting.4 the research had set out to study life stories, not trauma, but that was a dominant theme. sadly, participants’ stories accepted childhood loss, abuse and trauma as normal and did not tell of proactive adult concern about either their losses, neglect and maltreatment or the, often obvious, effects on their behaviour. we also concluded that “many of the difficult behaviours exhibited by addiction service clients may be due to trauma, rather than to drug effects, drug dependence, fecklessness, or being antisocial or aggressive by nature” (p13). analysing the childhood data, we noticed that participants also told of considerable trauma whilst using drugs, especially from violent events. the present analysis aimed to explore this further, with the aim of considering how violence and trauma interact with problematic drug use. as will be explained, we used a theoretically derived scheme of themes. in scotland, drug injecting has been an indicator of ‘problem drug use’ since the early 1980s, so here the target population was people who had injected drugs. this criterion was chosen because most scottish drug injectors use multiple classes of controlled drugs, and drink alcohol as well, so focussing on heroin, or opiates in general is inappropriate. there is a plenitude of research documenting violence and trauma amongst drug injectors, but only rarely is there discussion of causation beyond attributing violence to the nature of drugs, drug addicts and their illegal activities. trauma, violence and recovery in the life stories of people who have injected drugs richard hammersley,1 marie reid,1 phil dalgarno,2 jason wallace,3 dave liddell3 1department of psychology, university of hull; 2school of health and life sciences, glasgow caledonian university; 3scottish drugs forum, glasgow, uk abstract this paper reports qualitative data about violence and trauma amongst drug injectors in scotland, collected using a life story method with 55 drug injectors currently in recovery. it focusses on different types of violence and trauma that occurred whilst using drugs. stories told of very severe and repeated traumas often involving extreme violence. one motive for escalating and continuing drug use was avoidant coping to deaden the emotions and thoughts regarding these traumas. many traumas were due partly to the criminal drug milieu, so respondents were in a vicious cycle of using opiates and other sedative drugs to cope with the consequences of being involved in a lifestyle of using, supplying and obtaining illegal sedative drugs. drugs were used as a dynamic method of self-medication or avoidant coping to cope with life in a criminal milieu. traumatic events were more often described as worsening the lifestyle than as being motives for quitting. amongst the traumas recounted were many incidents of extreme violence. using drugs to block the psychological effects of such traumas may help explain why people persist using opiates despite experiencing evident serious harms. interventions need to recognise this, be trauma-aware and appreciate that violence and trauma have severe adverse effects on drug injectors even when they are themselves hardened and violent. correspondence: richard hammersley, department of psychology, university of hull, cottingham road, hull hu6 7rx, uk. tel.: +44 7979303951. e-mail: r.hammersley@hull.ac.uk key words: drug injecting; heroin; trauma; violence; recovery; self-medication. conflict of interest: the authors declare no potential conflict of interests. acknowledgements: we would like to thank five fieldworkers who collected data and three former staff of scottish drugs forum who facilitated the research but did not contribute to this paper. received for publication: 1 may 2020. accepted for publication: 4 october 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:65-74 doi:10.4081/qrmh.2020.9073 qualitative research in medicine & healthcare 2020; volume 4:65-74 no nco mm er cia l u se on ly part of the stereotyping of drug injectors is to depict them as evil, unempathetic due to addiction and/or personality, and lacking volitional control of their actions.5 it is less often considered that they too suffer as both victims and perpetrators of violence.6-8 theory about drugs and violence tends towards theorising that either problem drug users are the victims of their circumstances and history, or that they have major psychological problems due to predisposition. circumstance theories tend to assume that problem drug users are only involved in violence because they have no choice and that they suffer because of it, while predisposition theories tend to assume that they choose violence and are inured to it. in reality, the two types of explanation interact, and people can be both damaged victims and vicious perpetrators. a third type of explanation, intoxication, explains violence as directly caused by the acute effects of drugs or by the chronic effects of persistent use. two broad classes of circumstances have been proposed to explain drug related violence: i) circumstances of enforcement, when buying and selling illegal drugs are policed by threats of, and actual, violence;9,10 ii)cultural circumstances, when problem drug use (typically involving opiates, stimulants or both) occurs in a deviant subculture11 where certain forms of violence are considered normal, or instrumentally necessary. within such a subculture, skill at violence and tolerance for it may facilitate success.7,8 globally, drug supply and use often occur within gang culture, where the gang uses violence to enforce power in general rather than drugs trade specifically.12-16 here, we will refer to milieu rather than subculture because the life story approach is about the individual story rather than about a shared cultural understanding such as might define a subculture. most scots who inject have injected heroin, but they usually also take and inject other drugs.17 for life stories involving drug injecting, the concept of a subculture also may be problematic because people in recovery often emphasise that the lifestyle of injecting heroin or other drugs is inauthentic and based only on a shared desire for drug use by people who otherwise have little in common.18 however, ethnographic accounts of how social groups of drug injectors function suggest a subculture at the time, which can be durable and have positive attributes such as caring, sharing, compassion and mutual support.7,18 here milieu is used to encapsulate these sociological complexities. there are also two broad types of explanation of personal predispositions that facilitate violence: iii) predisposed by trauma – as reviewed in hammersley et al.4 many problem drug users have ptsd, which can lead to violent behaviour in some situations; iv) predisposed by personality some personality traits and developmental and acquired disorders, including brain damage, make people more easily capable of violence against others. such dispositions are over-represented amongst problem drug users and prison inmates.1,2 childhood trauma is often theorised to be a causal factor for adult psychological problems,19 so these explanations interact. finally, v) intoxication facilitates violence by impairing multiple cognitive processes affecting mood, notably irritability, decision-making and forward planning, the interpretation of interpersonal communication, impulse control and pain perception. such effects are documented for alcohol, opiates, benzodiazepines and stimulants.2 here, in a paper about life stories rather than neuroscience, we shall not separate out acute intoxication from longer-term drug effects, or effects of withdrawal. a problem to be noted with research on drugs and violence is that in the literature the effects of alcohol overwhelms the effects of drugs.20,21 moreover, not all studies report a detailed substance use history, so it is very difficult to connect violent behaviours to specific drug combinations. we shall go on to propose that, generally, a drug’s neuropsychological effects causing violence is too simple an understanding anyway. here, using elicited life story data collected from problem drug users in recovery in scotland,22 we document the often-extreme violence in the drug injecting milieu, propose a model of how problem drug use and violence develop together, and how the two interact to impede recovery. in brief, a vicious cycle tends to develop where sedative drugs are used to escape from the psychological consequences of violence and other trauma, with both being increasingly caused by the injecting and drug supply milieu, which the person is involved in mainly to obtain the sedative drugs that enable them to cope with the associated violence and trauma. previously,4 we documented the severity of trauma in the childhood stories of many people who are recovering from problem drug use in scotland. they often told of violence and abuse that were much more protracted and severe than was normative in the culture they grew up in. alcohol abuse by parental figures was often involved. many of the cohort felt that their trauma was directly related to their subsequent drug problems. it could lead directly to precocious substance abuse as a form of avoidant coping, to forming relationships with friends or partners who were problem drug users, drug dealers, or criminals, and simply to heavy substance use which formed a basis for the subsequent development of a drug problem in late adolescence or early adulthood, which was often triggered by further trauma. a minority of the cohort described severe behavioural problems as children that led to their being placed in care and/or abused, then led to problem drug use. this paper continues the lifespan narrative through adolescence to adulthood, focussing on trauma. participants told of a wide variety of traumas and life challenges, but the high incidence of events involving violence was particularly striking to the researchers. therefore, this analysis focusses on how violence whilst adult fit into drug users’ life stories, structuring the results around the [page 66] [qualitative research in medicine & healthcare 2020; 4:9073] article no nco mm er cia l u se on ly five causal themes outlined above: trauma, enforcement, culture, personality, intoxication; then goes on to consider how trauma and violence affect recovery. the aim of this analysis is to elucidate the impact of violence on the lives of people who have injected drugs. methods dan mcadams’ life story method (see www.sesp. northwestern.edu/foley/, accessed 23/5/2012) was used to collect narrative data about the person’s entire life, using a semi-structured interview. this asks participants to divide their lives into chapters (here tv episodes was the substitute metaphor) and describe them, then describe a series of more focussed events such as the worst thing that ever happened to you and the wisest thing you have ever done. it also asks specific questions about life. theoretical assumptions23 include that personal identity is constructed as a story, and that life stories have common, classifiable themes, characters and structures, which are informative about the person’s identity. the life story method encourages systematic recall of key aspects of the person’s life, which in turn allowed participants to place drug use as centrally or peripherally in their stories as they wished. this was deliberately to contrast with the normal tendency for research with drug users to focus on drug use, risk factors for drug use and harms caused by drug problems. the research team that designed, implemented and analysed the research had multiple perspectives as it included academics with considerable experience of addiction research, staff of scottish drugs forum (sdf), which is scotland’s main umbrella organisation for charitable or third sector work against drug problems, and sdf volunteers who served as peer research fieldworkers. the original research intent was to strengthen the voices of drug users themselves within discourse about drug problems and provide information about the nature of their lives, which was why the life story method was chosen. the method was adapted by research stakeholders after discussion by simplifying the definition of different periods to childhood, adolescence, adulthood before injecting, adulthood with injecting, and afterwards. fieldworkers were sdf volunteers trained to conduct peer research, themselves recovering from substance use problems and free of illicit drug use. they had already been assessed and trained to work as volunteers within sdf. they were additionally assessed for this particular project and supported throughout it by their case workers and the sdf user involvement development officer, who directly oversaw the fieldwork. training comprised some 50-60 hours of general training from sdf staff, plus some nine hours of specific training in the interview method and rationale for the research. during training, the interview method was discussed and modified according to trainee fieldworker feedback. sixteen peer researchers started the specific training process of whom six completed it and became fieldworkers. feedback from the other 10 indicated that during training, especially the roleplay/ practice part, they did not feel confident to handle the interview process without detrimental effects on themselves. the six fieldworkers completed the research without reporting any such effects. participants participants had recently been heroin injectors, which does not mean that their drug use was limited to heroin or to injecting drugs. drugs commonly used with opiates in scotland 1980–2011 included benzodiazepines, alcohol, methadone and cannabis, while relatively few scots had a primary problem with stimulants. participants and fieldworkers were in recovery. practices and philosophies of recovery are varied in scotland.24 practices include 12steps abstinence-based fellowships, recovery communities where people reduce their use of illicit substances and also substitute prescribing of opioids, usually methadone, but sometimes buprenorphine. individuals ultimately decide themselves the appropriate role and duration of substitute prescribing; whether abstinence involves abstaining only from substances that caused problems, or also from others with the potential to cause problems and whether prescribed medication, especially substitute opiates, are exempt from abstinence; as well as the use of mutual assistance organisations (e.g. narcotics anonymous). eligible participants had injected drugs within the previous five years. all the achieved cohort were currently in recovery and had received some form of intervention for their drug dependence at some point. they were recruited through drug agencies, support and recovery networks, and personal contacts during april to july 2011. deliberately, recruitment occurred in cities, in post-industrial towns and in predominantly rural areas. to ensure confidentiality, precise recruitment sites are withheld. participants were given a £15 shopping voucher as a disturbance allowance. interviews took place on the premises of diverse recovery organisations in scotland. of 55 participants, there were 38 men and 17 women. the age range at time of interview was 21 to 49. all but one had at least one sibling and the mode was two. the majority of participants had worked at some point, although only about a third mentioned working in a stable way for periods of years as part of their stories, and most had children. twenty-three had lived most in a city and the rest had mainly lived in a smaller place. most recalled some degree of trauma, often very severe, in childhood. over a third of participants mentioned that at least one of their parents had had an alcohol or drug problem when they were growing up. more women than men had lived with a partner who also used drugs and, for women, it was often a sexual partner who had introduced them to heroin injecting. [qualitative research in medicine & healthcare 2020; 4:9073] [page 67] article no nco mm er cia l u se on ly data analysis interviews were digitally recorded then transcribed by a company specialising in medical and research transcriptions and accustomed to transcribing scottish accents. transcripts were passed to the researchers for analysis, along with the recordings for reference. recordings were deleted after editing the transcripts to improve meaning and anonymise all identifying information. we analysed the data in this paper in three stages. first, we conducted a content analysis of each of the structured questions, classifying the answers, then if appropriate over-arching themes were extracted from the content in a top-down way. second, a general thematic analysis extracted common themes from both the life story structured into episodes and the answers to the more structured questions, at this stage the overarching theme of trauma emerged. third, following on from our previous paper,4 the data were re-examined by re-reading the coding from the second stage, then revisiting the original data, and coded for the five theoretically derived themes described above: trauma, enforcement, intoxication, culture, personality. themes are presented in this order because some extracts from the interviews illustrate more than one theme. finally, the impact of trauma on recovery is discussed. the first author led on data analysis, but the interleaved processes of analysis and write-up were recursive. at each of the three stages, initial drafts were read and discussed with the other academics and practitioners on the team, including those themselves in recovery, in order to synthesise their various academic or theoretical, practitioner and recovery perspectives. results violence and trauma in life stories within the life story interviews, stories of violence and trauma were told as parts of the narrative of the different episodes in people’s lives. as will be seen below, violence and trauma could be formative aspects of the development of a drugs problem, and also of the development of a life of offending, including time in prison. stories of violence and trauma also came up as answers to the specific questions posed about life including: the worst thing that happened; something that changed your life for the worse; vivid adult memory; most stupid thing you ever did; biggest life challenge; bereavement; greatest failure or regret. the majority of the life stories included violence and trauma, but a minority did not. of these, three stories contained relatively little detail of any kind. another two of the youngest respondents, in their early twenties, had quickly got methadone prescriptions and left the drug milieu. seven respondents’ stories, more than the others, involved legitimate employment and less drug supply and crime. finally, two respondents had spent most of their adult lives in prison. although violence and trauma do occur in prison, this limited their possibilities for experiencing the kinds of trauma reported here. trauma some people told of already using drugs heavily, then converting to more problematic patterns of use after a specific major traumatic event. more problematic patterns of use including starting injecting, initiation into heroin use and going off the rails and no longer caring about managing work, family life or anything else. specific traumatic events included the sudden death or murder of a family member, sometimes multiple losses in a short time period, breakup with a partner, and the sudden and unexpected loss of access to children. although some of these traumatic events were related to drug use or dealing, others were not. perhaps the most extreme example was a man whose infant son died of cot death then his mother, father and younger brother also all died within a very short space of time. nobody told of killing anyone else, but this would have violated the agreed limits of respondent-researcher confidentiality. however, some respondents described perpetrating acts of serious violence against other people including family members, usually for what were seen as good reasons at the time. there was also violence enforcing drug trade and other criminal activity. as will be seen in the quotes below, these different types of violence were not always tidily separated. respondents tended to take the death of family members badly, especially if there were multiple deaths and if the death had been sudden and violent. a commonplace assumption in addiction research is that people become inured to the violence of the lifestyle. in reality, even respondents who were themselves hardened perpetrators of violence took sudden violent bereavements badly. exposure to firearm violence at least is clearly associated with ptsd.20 firearms are rare in scotland, but some of the cohort mentioned events involving guns. one man said: i have had guns put at my head a couple of times. (…) i mean when that happened to me last time it happened it wasn’t long before i came into treatment, and i told them to pull the trigger. did you? which is not a clever thing to do. no [laughter]. but it was kind of my mate got smashed by a sledgehammer right in front of us, right beside us at the back of the motor, and i thought the two of us were getting it. a woman told of being shot with a shotgun leaning [page 68] [qualitative research in medicine & healthcare 2020; 4:9073] article no nco mm er cia l u se on ly out of a window as the worst thing that had ever happened to her: a guy went to shoot my man and i got it, and i play the video sometimes that can come up and play that in my head sometimes, and the shock i felt with that. (…) i think that is the worst thing that ever happened. the graphic detail of these and other quotes are reminiscent of the vivid memories that occur for traumatic events. another man had gone to prison for shooting his sister’s boyfriend: well i done eight years out of the twelve. i shot my wee sister’s boyfriend during a stupid drunken fucking pill fuelled fucking anger rage thing. anyway, i got the sentence, done eight years out of it (…) the saturday previous to my liberation two boys kicked in my wee brother’s front door, sprayed him with petrol, torched him. i got out on the friday and he died on the tuesday. two weeks after they buried him, my mum died. my head went right up my arse. some participants also told of the non-violent losses of relationships and/ or access to their children, which had devastating effects on them and increased their drug use. one man who had been bringing up his daughter told about the following losses. he was already using drugs at the time, but not yet heroin, but he began in jail when his mother died. so, i brought the wean up there along with my mum and then ended up getting the jail and shit, done a stint in the jail, lost my mum when i was in the jail. i was only out months... no, two weeks before i got out my dad couldn’t cope with the wean, so the wean went back to the mum and then i was only out about two months and my dad died, and it’s just, my head was up my arse then with losing my mum, the wean, then losing my dad. even though he was a bastard and all that, he was still my dad, you know? the reason he gave for starting heroin was: to block everything out of my head more or less, but it blocked it out that night, but it was there the next day again, even worse. another man, who had told of an unusually delinquent adolescence started taking heroin when he came out of five years in prison for attempting to rob a post office, but lost access to his wife and child because she had started seeing someone else: it was about that time i just started, i started taking kit [heroin]; i started injecting kit. i started smoking it in the [clinic1], kipped at my mum’s, started smoking it at the [clinic1], i liked the feeling – it took everything away, you know the madness, not the madness, the emotions. it took the emotions away and it just numbed me up for a bit. i was out in homeless places... his drug use got worse and he ended up seriously fighting with his brothers about drugs while he was drunk: and i went up the stairs after robbing this guy, i had three ounces of kit right, i’d stashed them in the park and i took one up with me and i went in the toilet and had a hit out of it, and went up the stairs and realised i’d left it in the toilet. i went back down and he’s pouring it down the toilet. oh! so, i stuck the nut on [headbutted] him and he’s fell in the bath and i’ve about turned and walked out the house. his other brother then attacked him with a spade, then he then told them he was going to kill them, went home got a knife and attacked both brothers, stabbing one multiple times. he described himself as “mad with drink” and mentioned that this was also so when he tried to hold up the post office. he now saw all this as totally unjustifiable. he was put back in prison for this, having been charged with premeditated attempted murder. on release, it came out that his grandfather had been sexually abusing multiple children in the family, including the participant. he took his revenge by forcing the grandfather to give him all his money amongst other things. then, his grandfather was assaulted and murdered by two men who found out about him being a paedophile. later on, the participant tried to kill himself by being run over by a train. another man, who had a university degree turned to drugs in his mid 30s after he had been in a motorbike accident and taking prescription painkillers, then his wife of eight years left him and took their four-year-old daughter: …turned out she had been abused by her dad as a young lassie. right from she was five or three or something right to she was fifteen. sexually, physically abused and mentally abused as well, he had committed suicide and he had hung himself so she could not get answers. […] we had a wee lassie and she couldn’t handle the fact that her wee lassie was suddenly in a position that it could happen to her, no evidence or no reason to think it but just because of her past she thought her mum didn’t protect her wondering if she could protect her lassie. so, she just upped and offed and that shattered me and that was the end of me. [qualitative research in medicine & healthcare 2020; 4:9073] [page 69] article no nco mm er cia l u se on ly another man with a long history of crime and drug use described his reaction to the love of his life dying in her 30s: see the day before partner1 got buried i went and got a turn (hit of heroin) and that is how bad my drug problem was, and i needed to focus, and to help myself manoeuvre and things like that and motivate myself. and leaving it to the last minute before i got ready to go and see, the done thing would have been for me to stay in the room with partner1 the night before she was going away. that didn’t happen i went and got a turn instead. these extracts illustrate the wide range of severe traumas that respondents told of. it is important to emphasise that we have used illustrative quotes, not selected the worst ones for dramatic effect. there were drug trade related traumas and other types of trauma, sometimes multiple types. traumas could quite directly escalate drug use, the drug using milieu increased the experience of trauma, and drug use made it harder to cope with trauma because opiates blocked experiencing and dealing with the emotional effects, which is generally required to recover from trauma. the severity of respondents’ traumas could be such that one man told of being asked to leave a psychotherapy group for addicts because his life story was too upsetting for the other group members to cope with. enforcement respondents also told of serious violence in the context of enforcing the illegal drug trade and also of maintaining respect and status within a criminal community. generally, people were more matter-of-fact about these stories, even making them comic, than about those of other kinds of trauma, but to the researchers the stories seem extreme and they are probably illustrative extreme examples rather than routine occurrences. the event when the respondent told the man with the gun on him to pull the trigger is one example. another example was a man who described being pinned to the door of a car by a knife through his hand. another example was from a man who had long been involved in criminal gangs as well as using drugs, who was an enforcer in prison: and i would be on the phone he’d say scald him, i have to put sugar and (boiling) water in big continental cups and throw them at this guy’s face. i have got to do this because if i don’t then i am discredited, my credibility is out the window. interviewer: that’s terrible (this is noteworthy as a rare occasion when the interviewer spontaneously judged the story). moreover, people who had committed such acts of enforcement, rather than being victims of them, now found it distressing that they had done these things, even although they seemed reasonable or necessary at the time. violence and intoxication two of the above quotes mention intoxication as a factor in violence, although in the cohort this was rarely only on opiates. alcohol and benzodiazepines were more commonly mentioned as specific factors, or simply being intoxicated on an unspecified mixture of drugs. respondents told of being violent themselves whilst intoxicated and of the violent acts of other people while intoxicated. to illustrate, one woman described the violence of the men that she associated with. this account first describes them being attacked whilst in the house taking drugs and drinking, then goes on to describe how violent one of the cousins was, again it appeared usually when intoxicated. and the next thing we were sitting in my house and i just seen a lot of shadows, and my veranda door had a bit of glass in it that you could see so i was like that. and there was only me, boyfriend’s cousin2, boyfriend’s cousin1 and person2 lying on my couch sleeping because the celtic rangers game had been on that day, but people must have thought everybody was still in watching the game, or having a drink or something… […] and the next thing the two doors went in right, and there was about thirteen of them or something and they have done boyfriend’s cousin1 right in. you can see right in there right, and see that round bit that was sliced right in half, and he was stabbed about twelve times everywhere, all over the place. boyfriend’s cousin2 face was opened right up like that and person2’s head was like a road map, he woke up like what is going on and getting battered about with a machete. she went on to describe the violent nature of one of the men who was attacked: boyfriend’s cousin1 was a bastard as in his hands were like shovels and he was a mental job, so he was violently violent do you know what i mean [laughter], he was a bastard. he would batter you with a machete but don’t get me wrong with the flat end and the blunt end but it still shows fuck. talking with the peer interviewers, respondents were generally matter of fact about such violence, but some of them indicated that with hindsight they felt that they would not, or should not, have done these things expect that they were intoxicated at the time. although, some were clear that the effects of intoxication were not really separate from the effects of the milieu, where violence was part of life. [page 70] [qualitative research in medicine & healthcare 2020; 4:9073] article no nco mm er cia l u se on ly some respondents said that they now, in recovery, regretted things that they had done whilst intoxicated. but none told stories of feeling remorse at the time and a few explicitly said that the now regrettable violence seemed normal, even appropriate, at the time. culture: the milieu itself this leads on to the impact of culture. many respondents recognised that the culture they grew up in was often violent. violence being most often related to disciplining children and partners, to heavy drinking and to gang fighting which was common in some parts of scotland when these people were young. they tended to accept these common types of violence as normative.4 however, respondents emphasised that some forms of violence they had experienced as children were not normative. common non-normative forms of violence were being “very strict” and using physical punishment on children (often when drunk) and being habitually rather than occasionally violent to partners. nobody mentioned perpetuating these forms on others as adults, although given the limits on research confidentiality, they would not have done. most violence described was depicted as being part of the illegal drugs market and it generally occurred as the result of drug debits (see above), or other retribution. some women also described having been in abusive relationships, sometimes multiple ones. most of these abusive relationships were with men who used drugs. for example, one woman who married age 18 into what turned out to be a drug dealing family recalled her first violent fight with her husband: i was as much to blame as him i see that now but i remember one day daughter1 stood in her coat screaming blue murder screaming going on for i think the reason i went i’d like to go out in area1 in the morning early, i can’t remember the reason now and i bought a pair of shoes a cheap pair of fucking shoes and there was murder and now it was how he was wanting money for drugs. a big fight started but i remember, i got on with it but i remember i ended up in a corner and he spat on my face and that stuck in my head all through the lowest of the low, meaning how bad i felt then. she then described escalating her drug use and beginning injecting in this context and the following quote also illustrates the impact of bereavement and the use of opiates to cope: i was taking quite a lot myself, speed was a big part of drugs for me i used it through even taking kit i’d be up and down on speed as well. but he got, my mother in law got murdered in ’92 and things had dramatically changed. i was getting dfs from the doctor, i no really to take in the ri-, i took some didn’t really like the feeling of them and it went dead quick within weeks to him coming back [probably from prison] cut out [i.e. some heroin], me snorting it and within a week i was jagging. two other examples of being enmeshed in a violent and traumatic milieu: and it was all crooked people that my dad brought into the house, every one of them was crooked i didn’t know anybody that wasn’t crooked. […] i can remember sitting in the house one day and he had four guys in and every one of them had been done with murder. …my sister died. she actually came away from the drugs started to drink though, and her boyfriend got beeped from my cousin to go somewhere. he was still injecting and done everything until he cooked it up he started doing, she has been in a bath he went away. she went and took it and because she hasn’t used it for, i don’t know how long, she has od-ed, somebody has phoned him there was somebody else in the house. the story goes on to describe how his sister’s boyfriend had cancelled the ambulance from concern over police involvement. personality a significant minority of respondents told of childhoods that they considered suggested that they had grown up with major difficulties or problems that as far as they knew preceded childhood trauma and definitely preceded drug use. as adults, they were not necessarily distinguishable from other respondents who had been traumatised. one man explicitly said that he thought that he had adhd. others described being very impulsive and delinquent as children despite not recalling significant trauma that might have caused such behaviour. additionally, the content and style of another man’s story strongly suggested adhd. it did not appear that this had been fully recognised by family or health professionals although he was labelled hyperactive as a child. he told of some very serious and potentially traumatising events, most of which could be attributed partly to impulsivity, risk-taking and extreme intoxication, although he did not seem to explicitly make this connection. unusually, he had mostly paid for drugs by having well-paid jobs as a milkman (in his teens), on a fishing boat, then in the merchant navy. potentially traumatic events included drug related bereavement, the death of his father, which led to him using drugs even more heavily than ever, him assaulting other men on at least two occasions, and at least two car crashes: [qualitative research in medicine & healthcare 2020; 4:9073] [page 71] article no nco mm er cia l u se on ly i passed my test and i had taken speed the night before i can’t remember and i mind gouching and i hit a bus at eighty mile an hour. i nearly killed everybody on the bus, the engine and i walked out the car and i dragging the bus driver out the bus, i was screaming at him. and i kind of felt that i was going to punch him, and i had a couple of people i had on my back and i have mind me and my dad arguing because i didn’t have a good relationship with my dad. the trigger for his most recent residential rehabilitation was him being seemingly drugged and sexually assaulted whilst on leave from working on a boat. impact on recovery? most respondents told stories that involved multiple events that were traumatic and/or violent. as the above tellings illustrate, such events could lead to more serious use, such as injecting, to temporarily increased drug use, or indeed to continued heavy use. however, there were no discernible orderly connections between traumatic events and quitting, or between traumatic events and succeeding in quitting without relapse. in the stories, quit attempts were sometimes associated with positive events like the birth of children and sometimes with negative events, often very serious mental or physical health problems that had hospitalised and incapacitated them, reducing, at least for a while, their choice about quitting. similarly, prison could lead to quitting or it could make problems worse. methadone was also often involved in recovery. some people eventually just decided to quit or go into recovery. but events around the quit attempt did not seem to predict success in any clear way. in the stories, violence and trauma played a stronger and clearer part in maintaining the lifestyle than in motivating cessation. discussion to us, the data suggest that the drug injecting milieu often involved violence, which had distressing psychological effects on victims, perpetrators and their family and friends, sometimes resulting in bereavement. superficially, this is obvious, but we feel that research and interventions on drug injecting and addiction tend to trivialise this distress. active users and people in recovery tend to wave or laugh off their distress, at least in public, or attribute it to the inauthentic and dysfunctional nature of the milieu.19,20 service providers tend to focus on the drugs as the root cause of violence which, if anything should be a motive for abstinence or reduction in use, so implicitly distress is conceptualised as caused by drugs, not by the violence itself. for example, the world health organisation suggests that drugs and violence are related due to psychopharmacology, economic compulsion and systemic mechanisms.25 academics tend to be concerned with causation, so focus tends to be on understanding those mechanisms, which the present analysis indeed supports. however, to us, an essential further mechanism is that violence and trauma tend to increase and perpetuate substance use. drug injectors often played all three roles of victim, perpetrator and family member or friend, and experienced multiple distress. some stories told of perpetrating violence whilst intoxicated, and some respondents now wished that they had not done such things. but there was also violence and trauma when intoxication may not have been a factor. a more substantial motive for using opiates and other sedative drugs was to block out the psychological effects of violence. often the violence is linked to the supply of the very drugs being used to block the effects of violence; a vicious cycle. to escape this cycle, a drug injector needs to be able to stop using sedative drugs and also to be able to cope with the unblocked thoughts and feelings that emerge un-sedated. to do so while the relevant drugs are illegal and stigmatised required most people to move away from the milieu geographically, or socially and psychologically. furthermore, taking an overview of these life stories, rather than being a drugs milieu, the milieu more seems to us to be markedly interpersonally harsh, rough, violent and murderous, with drug and alcohol use being secondary. this is a milieu where one’s brother can be unexpectedly set on fire as you are being released from prison. much of the violence emerged from drug supply, but this occurred in the broader context of criminality. drug injectors usually had to be involved in this criminal milieu because involvement was necessary to obtain drugs and often to fund drug use. so, the milieu or setting of illegal drug use appeared to be an additional contributor to trauma, as well as individual circumstance and predisposition. we suggest that a vicious cycle tends to develop where sedative drugs are used to escape from the psychological consequences of violence and other trauma, with both being increasingly caused by the violent drug supply milieu, which the person is involved in mainly to obtain the sedative drugs that enable them to cope with the associated violence and trauma. we feel that there is complacency about this state of affairs, which would not be tolerated in any other sphere of mental health. it seems inconceivable, for example, that violence by and on people with intellectual difficulties nowadays would be dismissed as an inevitable consequence of their condition. while drug supply continues to be illegal and entirely unregulated, it provides a bounteous commodity for criminals and opportunity for youth in areas where legal paid work is scarce.26 regulating drugs instead would weaken the links between their supply and violent criminal activity, and the stories here included many incidents of violence linked to drug dealing. however, drugs, especially sedative ones, had two other links to violence. respon[page 72] [qualitative research in medicine & healthcare 2020; 4:9073] article no nco mm er cia l u se on ly dents were involved in some violence while they were intoxicated and often mentioned alcohol and benzodiazepines as specific factors. second, much more importantly, it was clear from these data that the psychological aftermath of violence, whether as victim or perpetrator, was often managed by using drugs for sedation, to avoid thinking about the psychological trauma that the violence had caused. the “self-medication” hypothesis has a long history in addiction research,27 and is often mentioned in clinical anecdotes, yet it has lacked convincing research support.28 perhaps this is because it has usually been framed as selfmedication for a pre-existing psychiatric condition rather than being a dynamic method of coping with life in a criminal milieu. recent findings indeed suggest that selfmedication is a dynamic feedback process where drug use can increase the likelihood of trauma.29,30 here, indeed intoxication facilitated repeated involvement in traumatic acts, both as victim and perpetrator, that without self-medication might have become intolerable to the person. regarding whether heroin addiction is about self-medication to cope with childhood trauma, or about intoxication,31,32 these data suggest that both apply, plus self-medication – avoidant coping – to cope with trauma related to the milieu. opiates and other sedatives are not specific medicines for trauma, but they are powerful tools to suppress cognitions and emotions that can be used to dull the pain of trauma. this use may also help answer the frequently asked question “why do addicts persist with use despite very marked adverse consequences?” perhaps this is because they learn to self-sedate with drugs to escape those adverse consequences leading to a vicious cycle that is difficult to break. this theory contrasts with predominant explanations of drugs themselves as the root explanation of self-destructive behaviour. for example: brain imaging studies from people addicted to drugs show physical changes in areas of the brain that are critical for judgment, decision-making, learning, memory, and behavior control. scientists believe that these changes alter the way the brain works and may help explain the compulsive and destructive behaviors of a person who becomes addicted.33 for us, a danger of attributing violence and other dysfunctional behaviours to drugs’ effects on the brain is that this minimises the need to understand and intervene regarding the appalling social and psychological conditions where drug injecting tends to occur.6additionally, trauma also has prolonged effects on brain structure and function34 so, in the absence of relevant longitudinal imaging data, such changes may be reasons for substance abuse rather than consequences of it. brain changes may reflect that a traumatised person may care less about themselves, be less concerned about life planning and be less inclined to avoid destructive behaviours, as told by participants here. then of course chronic drug use may cause further neuropsychological changes. substitute prescribing of drugs is accepted to reduce offending and other problems related to the milieu,35 but it does not disrupt the violence and may even help perpetuate it by increasing the number of people who can remain sufficiently sedated to avoid dealing with their traumatic experiences. substitute prescribing works best as an adjunct to a recovery that involves deliberately leaving the milieu and includes psychological intervention. such interventions should be trauma aware,3,36 which extends to recognising that the perpetrators of violence can also be traumatised, and their traumatisation is often worsened by previous trauma. this applies even if they appear callous and lacking remorse, which are symptoms of ptsd. addiction services are working regularly with traumatised people and it is important for them to get the balance right between encouraging abstinence or reduced substance use and helping people overcome traumatisation, which is no less problematic for it being in some sense caused by drug use. getting the balance wrong can have disastrous effects,6 as attempted abstinence or moderation without overcoming trauma may be unmanageable, but so may be overcoming trauma whilst chronically intoxicated. it is likely that any sedating drug including alcohol can be used for avoidant coping, so further prohibitions on specific drugs may not be effective. moreover, supply reduction could make the milieu more violent as prices, profits and risks increase. reducing the violence associated with drug supply is the most logical way of breaking the vicious cycle. much of that violence is instrumental in an industry that is illegal, has no recourse to the law and is completely unregulated, so regulation may be the best option for reducing drug-related violence, which in turn may facilitate recovery from opiate addiction. a wide variety of options for regulation exist, from supervised injecting, to the medical supply of some opiates (although see the concern about avoidant coping), to decriminalisation or legalisation of some drugs. in summary, these data suggest that drug injecting is linked to violence in three ways: via instrumental violence in the drugs trade; violence whilst intoxicated; use of sedative drugs to cope with the adverse psychological consequences of violence. these create a vicious cycle of using drugs to cope with the terrible things that have happened due in part to being involved with illegal drugs. often there are multiple traumas before a drug injector recovers and recovery needs to facilitate dealing with trauma as well as quitting drug use. although competent addiction services already appreciate this and plan their interventions accordingly, there is a continued need for services to become more trauma aware and additionally to appreciate the cyclical relationship within the drug milieu between violence and sedative drug use. 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scottish recovery network, 2014. available from: https://www.scottishrecovery.net/what-is-recovery/ 25. atkinson a, anderson z, hughes k, et al. interpersonal violence and illicit drugs. liverpool john moores university centre for public health, 2009. available from: https://www.who.int/violenceprevention/interpersonal_violence_and_illicit_drug_use.pdf. accessed: september 2020. 26. bourgois p, kain hart l, karandinos g, montero f. coming of age in the concrete killing fields of the us inner city. in: macclancy j, (ed). exotic no more: anthropology for the contemporary world. 2nd ed. chicago: university of chicago press; 2019. 27. khantzian ej. addiction as a self-regulation disorder and the role of self-medication. addict 2013;108:668-9. 28. hall dh, queener je. self-medication hypothesis of substance use: testing khantzian’s updated theory. j psychoactive drugs 2007;39:151-8. 29. garland el, pettus-davis c, howard mo. self-medication among traumatized youth: structural equation modeling of pathways between trauma history, substance misuse, and psychological distress. j behav med 2013;36:175-85. 30. lazareck s, robinson ja, crum rm, et al. a longitudinal investigation of the role of self-medication in the development of comorbid mood and drug use disorders: findings from the national epidemiologic survey on alcohol and related conditions (nesarc). j clin psychiatry 2012;73:e588-93. 31. lembke a. from self-medication to intoxication: time for a paradigm shift. addict 2013;108:670-1. 32. darke s. pathways to heroin dependence: time to re-appraise self-medication. addict 2013;108:659-67. 33. national institute on drug abuse. the science of drug use and addiction: the basics, 2018. available from: https://www.drugabuse.gov/publications/media-guide/science-drug-use-addiction-basics. accessed: september 2019. 34. yu m, linn ka, shinohara rt, et al. childhood trauma history is linked to abnormal brain connectivity in major depression. proc natl acad sci usa 2019 national academy of sciences;116(17):8582-8590. 35. independent expert working group on drug misuse and dependence. drug misuse and dependence. uk guidelines on clinical management. department of health 2017. available from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/673978/ clinical_guidelines_2017.pdf 36. dass-brailsford p, myrick ac. psychological trauma and substance abuse: the need for an integrated approach. trauma violence abuse 2010 2010;11:202-13. [page 74] [qualitative research in medicine & healthcare 2020; 4:9073] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2020; 4:9001] [page 43] introduction active duty, enlisted personnel in the u.s military use alcohol more often than cigarettes or smokeless tobacco (84.5%, 49.2% and 19.8%, respectively). alcohol consumption far exceeds the use of recreational drugs among active duty personnel.1 levels of drinking nevertheless vary by military branch, with personnel enlisted in the marine corps, army and navy than those enlisted in the air force reporting higher rates of alcohol consumption.2,3 we define problematic drinking as a spectrum of alcohol consumption involving risky and excessive drinking (i.e., drinking which increases the risk of poor health outcomes), alcohol abuse, and alcohol dependence. qualitative and mixed-method research situates active duty personnel problematic drinking in the context of daily life on military base, describing the influence of occupational or military culture on drinking patterns.4-6 ames et al.’s7 work underscores cultural norms that equate the use of alcohol with stress relief and perceive drinking as a mechanism for social bonding as contributing to higher rates of drinking in the military. likewise, larson et al.’s8 review of combat deployment and alcohol misuse highlights that an indoctrination into military culture that instils attitudes and beliefs about alcohol consumption shapes problematic drinking during deployment. a more recent study concluded that military socialization processes influence the current high use of alcohol among active duty personnel.9 although military culture has often been evoked in the scientific literature to explain problematic drinking in the military, it remains unclear how military culture drinking as routine practice among re-integrating national guard and reservists from arkansas traci h. abraham,1,2 ann m. cheney,3 geoffrey m. curran,4,5 karen l. drummond1,2 1south central mental illness research, education, and clinical center (mirecc), central arkansas veterans healthcare system; 2department of psychiatry, university of arkansas for medical sciences, little rock; 3department of social medicine & population health, center for healthy communities, som, university of california, riverside, ca; 4department of pharmacy practice, college of pharmacy and division of health services research, department of psychiatry, university of arkansas for medical sciences; 5central arkansas veterans healthcare system, north little rock, ar, usa abstract active duty enlisted military personnel are more likely to misuse alcohol than civilians – a pattern which persists even after the transition to civilian life. we used in-depth, substance use history interviews to elicit drinking trajectories from 54 re-integrating army national guard, air force reserve and army reserve personnel from arkansas with a history of problematic substance use. a hybrid inductive-deductive analytic approach revealed institutional norms, shared beliefs about drinking, and social values and expectations among military peers present in the context of military service that veterans described as having shaped their drinking trajectories. framing veterans’ narratives vis-à-vis practice theory revealed the complex processes by which excessive drinking was embodied as routine practice during military service and subsequently reproduced in a very different post-deployment context, often with deleterious results. elucidating these implicit processes suggested pro-active strategies for preventing problematic drinking by active duty personnel and improving the re-integration experiences of veterans. correspondence: traci h. abraham, central arkansas veterans healthcare system, 2200 fort roots drive, building 58, suite 305b, north little rock, ar 72114-1706, usa. tel.: 507-257-1744 e-mail: traci.abraham@va.gov key words: practice theory; military culture; veterans; alcohol consumption. conflict of interest: the authors declare no conflict of interests. funding: this research was supported by the department of veterans affairs office of academic affiliations advanced fellowship program in mental illness research and treatment, the medical research service of the veterans affairs of the central arkansas veterans healthcare system, and the department of veterans affairs center for mental healthcare and outcomes research. the va clinical science research & development grant icx000452a supported the research. the views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the department of veterans affairs or the u.s. government. acknowledgements: the authors would like to thank the veterans who participated in this study and who have reviewed this manuscript for authenticity. your service to research helps inform meaningful improvements to healthcare that make a difference in the lives of veterans. received for publication: 7 april 2020. accepted for publication: 9 september 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:43-53 doi:10.4081/qrmh.2020.9001 qualitative research in medicine & healthcare 2020; volume 4:43-53 no nco mm er cia l u se on ly relates to alcohol consumption among veterans. evidence indicates that active duty personnel’s problematic drinking continues as they transition to civilian life10 and that rates of alcohol use disorder (i.e., compulsive alcohol consumption and loss of control over the volume of alcohol consumed, accompanied by a negative emotional state when not using alcohol) is high among more recent veterans.11as some studies have reported rates of alcohol misuse as high as 40% among12 veterans of recent u.s. conflicts, ascertaining the role of military culture in the perpetuation of problematic drinking is particularly urgent. it is critical to identify innovative and effective strategies for treating and preventing problematic drinking in veterans. in this study, we aimed to gain an understanding of substance use trajectories among veterans for whom consuming substances (i.e., alcohol, illicit drugs) had complicated their re-integration experiences. we used snowball sampling to recruit 45 males and seven females (n=54) veteran and/or active duty national guard and reservists from arkansas with a history of problematic substance use. we collected data using in-depth substance use life history interviews, using a hybrid inductive-deductive coding approach to analyze interview data. during the process of developing analytic memos, we observed concepts from practice theory emerge inductively. bourdieu’s practice theory bourdieu’s13,14 practice theory provides a framework for explicating how veterans’ routine health behaviors develop and are reproduced (i.e., maintained over time) through daily interactions and practices. this framework lends valuable insights into the implicit processes that contribute to veterans’ problematic drinking. according to bourdieu, all behavior is set in social arenas called fields, or contexts.15 cooper et al.16 describe the military as a context distinct from the varied collection of alternative fields which constitute civilian life. this context is nested, consisting of the military as an institution and different arenas/contexts subsumed within that institution (e.g., the regiment). regardless of military branch, new recruits are immersed within the physical boundaries of a military base possessing its own internal logic, set of rules and regulations, and reference groups. these contexts generate a habitus, or framework of shared understandings and behavioral dispositions or embodied ways of being.17 habitus determines which behaviors are constituted as socially intelligible, normative and expected. a masculine-warrior habitus, which includes stereotypically masculine traits of self-control, courage, physical and emotional “toughness” (i.e., resilience), competitiveness, and physical aggressiveness structures the u.s. military. these traits, which prepare soldiers for combat, are valued and rewarded.18 the process of basic training, which physically and socially isolates new recruits from the civilian world, socializes new recruits in all branches of the military, including national guard and reservists, to the military habitus. by acting in ways that are valued within a social arena or context, social agents accrue capital (i.e., economic resources and social status). in this regard, military personnel who exhibit stereotypically masculine traits are rewarded with respect and loyalty from peers. superiors also promote them up through the ranks. thus, military personnel strategically internalize behaviors that will help them accrue capital such as practices to earn respect (i.e., social capital) and be promoted (i.e., economic capital). in the process, they embody habits or behavioral dispositions that reproduce accrued capital. by embodying a habitus, military personnel adapt to external conditions largely beyond their individual control and perform, without thinking, socially and institutionally patterned behaviors routinely. structure in the bourdieusian sense is therefore both external and objective (e.g., social expectations) and internal and subjective (e.g., shared ways of perceiving and understanding). by eliciting or constraining behaviors, structure produces behavioral similarities among social agents within a context – also known as culture. once embodied, routine practices structured by a habitus are often enduring, and thus uncritically reproduced from one context to another. what’s more, although habitus is a produce of social conditioning and thus transforms as social agents transition from context to context, a mismatch can occur between habitus and context as social actors transition from one social arena to another. bourdieu terms this mismatch hysteresis.13 the latter has important implications for how routine practices learned in the military, such as problematic drinking, might be reproduced out of context, and the potentially deleterious effect of reproducing behaviors thusly. understanding these implicit processes could thus support the development of more effective treatments. materials and methods study design we aimed to investigate substance use and re-integration among fifty-four (n=54) army national guard, air force reserve and army reserve personnel from arkansas; henceforth collectively referred to as veterans. substance use refers to consumption of alcohol, prescription drugs and/or illicit drugs. our multidisciplinary study team consisted of three research investigators, including one phd-level medical sociologist and three phd-level medical anthropologists. a research assistant possessing a master’s in public health and minor in anthropology supported the investigators. our study design combined rapid-ethnographic techniques that combined insights gained from first-hand observations and informal interviews at military bases with in-depth substance use life history interviews. we selected [page 44] [qualitative research in medicine & healthcare 2020; 4:9001] article no nco mm er cia l u se on ly this study design based in the potential for rapid ethnography to elucidate the implicit, contextual processes that contribute to veterans’ problematic drinking and suggest realistic strategies to develop health interventions for this population. rapid ethnographies use long-standing ethnographic methods (i.e., first-hand observations, in-depth interviews), but focus more narrowly upon a health-related issue (e.g., problematic drinking) and well-defined context (e.g., military service).19 as the latter renders contextand experience-rich research feasible in the condensed timelines of health services research, rapid ethnography is increasingly used to develop and assess health interventions.20 the institutional review board of the center for mental healthcare and outcomes research, central arkansas veterans healthcare system approved study procedures. participant selection we recruited potential participants via contacts within the national guard (e.g., chaplains, family groups, medical personnel) and, in keeping with rapid ethnographic approaches, in-person at national guard events and veterans administration clinics. we also used snowball sampling procedures.21 we asked participants to tell their friends about the study and to have them contact a member of our team if they believed that they would meet eligibility criteria. immediately before each interview, a member of our team used a modified version of the alcohol abuse and dependence and non-alcohol psychoactive substance use disorders sections of the mini international neuropsychiatric interview (mini) to screen volunteers for eligibility. the mini is a short structured diagnostic interview used to identify psychiatric disorders in the past 12 months.22 after experiencing recruitment challenges (i.e., volunteers who had not misused substances in the specified time period), we broadened the tool to assess substance use since entering the military. this strategy allowed us to recruit veterans with diverse substance use trajectories that had nevertheless once lived on a military base, were socialized in the military ethos, and had experienced the transition from the military to civilian life. as veterans who volunteered were explained the purpose of our study during recruitment and before consenting to participate, the excerpts presented below represent the perspectives and experiences of veterans who acknowledged having consumed alcohol excessively since having entered the military. participants a total of 45 males and seven women (n=54) veteran and active duty national guard and reservists from arkansas with a history of problematic substance use participated. participants ranged from 23 to 70 years of age. a majority had served overseas, including deployments to afghanistan, bosnia, ecuador, germany, iraq, vietnam and korea. all but one were enlisted military personnel (i.e., not commissioned officers). while some participants initially enlisted in the national guard or reserves, others initially enlisted full-time and subsequently joined the guard or reserves. regardless of these differences, all participants had been socialized in the military via basic training, allowing us to identify shared perspectives and experiences that transversed military branch and service era. data collection we first collected data using focused observations and informal interviews conducted at national guard drill exercises, deployment preparation briefings, pre-deployment health screenings, day-long post-deployment service events, and events sponsored for service members and families (e.g., retirement ceremonies). these data helped us gain a sense of general attitudes, shared understandings, language, and social practices related to substance use in the national guard and reserves. we recorded observations and informal interviews as field notes, using these data to develop interview guide questions for the substance life history interviews (described below) that included terminology familiar to veterans (i.e., acronyms common in the military). we then used substance use life history interviews, a form of life history interview adapted to the goals of this study, to collect data pertaining to individual substance use trajectories, perceptions of substance use, and histories of help seeking for substance misuse. life history interviews permit an in-depth exploration of individual biographies23 and are well-suited to embedding individual-level data in social and cultural context.24 these interviews employ broad, open-ended questions to explore events in a participant’s life history to which he or she retrospectively assign significance, and those experiences influenced behavior in relation to the topic of interest (e.g., substance use). life history interviews produce indepth narratives with render explicit the meaning that participants attribute to behavior and the contexts in which behavior is situated, producing rich data that is amenable to theory development. for this study, we used life history interviews to explore substance use in the context of participants’ military service and transition to civilian life. although we used a semistructured interview guide to keep questions consistent across participants, questions were raised in an open a manner to encourage lengthy narratives describing the social context, interpersonal relationships, organizational structures, and individual life experiences that influenced substance use. the semi-structured interview guide is presented in appendix. interviews took place face-to-face, in veterans’ homes or in the privacy of staff members’ offices, depending on participant preferences. the substance use life history interviews were 90 minutes to four hours in length, and audio recorded with participants’ permission. [qualitative research in medicine & healthcare 2020; 4:9001] [page 45] article no nco mm er cia l u se on ly audio recordings of the interviews were transcribed verbatim and imported into a software program for analysis. data analysis we used a hybrid deductive-inductive approach following the tenants of content analysis to analyze the interview transcripts.25 two anthropologists on our team first developed top-level deductive codes related to the goals of the study (e.g., perceptions of substance use). this initial coding scheme was later deepened by incorporating inductive codes (e.g., military culture) that emerged repeatedly across interviews through an iterative reading of the first batch of transcripts. during subsequent readings of transcripts, we refined the initial coding scheme and developed sub-codes. a software program was used to ensure coding consistency and to help the coders attain intercoder agreement.21 the software program’s memo feature, which permits analysts to interact more fully with data by reflecting upon the relationship between codes facilitated theory development. memoing supports the development of hypotheses regarding the relationship of patterns in the data to the context of military service and re-integration.26 a close reading of individual biographies led to the development of memos referencing key bourdieusian concepts (e.g., context, adaptation, routine practice). our use of practice theory as a conceptual framework is thus consistent with how participants made sense of their substance use life histories and re-integration experiences. results during substance use life history interviews, veteran participants described their socialization and experiences in the military. qualitative analysis of individual biographies revealed institutional practices and norms, shared beliefs about drinking, and social values and expectations among military peers that participants believed contributed to the development of problematic drinking. participants also described problematic drinking vis-à-vis structural conditions present on military bases at home and overseas. the social and institutional context of drinking among active duty personnel veterans consistently recalled that as new recruits they were immersed in a context in which consuming large quantities of alcohol was routine practice (i.e., per bourdieu, a behavior which is common and accepted uncritically and therefore normative). the normalization of drinking is evident in the words of an army veteran who stated that: i think i started drinking before i joined the military around 16, 17 years old. but after i joined the military in ’82, i was exposed to it every day (s1031). accordingly, most participants described having first embodied problematic drinking as habitual practice following submersion in the military arena. the contrast between life before and after having been socialized to the military habitus is evident in the following exchange between a researcher and a 23-year-old veteran of operation iraqi freedom who had been an in-patient for alcohol dependency treatment multiple times: interviewer: before you joined the military, had you used anything, or did you drink at all? respondent: i had a baseball scholarship and i was on the swim team. i didn’t do drugs, i didn’t drink at all; but, you know, it was always around. interviewer: it started afterwards? respondent: yes … yes, it started after. definitely. definitely (s1003). while a small minority remembered drinking casually prior to military service, most participants recalled consuming alcohol routinelyand in large quantitiesonly after entering the military. the excerpt which follows illustrates how drinking excessively as habitual practice was embodied during military service. the participant recounted how, during the conflict in vietnam: interviewer: vietnam was the first time you started drinking? respondent: well, basic [training], really… we got a three-day pass, went down to town, got drunk, throwed up. you know, ever since then [emphasis placed by the authors] (s1016). in recounting that we…went down to town and got drunk, the veteran cited above alluded to drinking as a social practice among new recruits, rather than an individual behavior. likewise, the words ever since then in the same passage renders the habitual nature of drinking as a practice embodied during military service and reproduced by veterans following re-integration into the civilian context evident. participants were thus aware of having embodied new routine practices related to alcohol consumption through their socialization in the military habitus, and often explicitly referenced routine drinking as a socially and institutionally patterned behavior. veterans furthermore described shared understandings, such as a work hard play hard attitude, present in the military habitus that framed alcohol consumption as a reward for hard work. these shared understandings normalized (and valorized) problematic drinking. in the social arena shaped by this habitus, even frequent, excessive drinking was perceived as unproblematic. the way in which shared understandings elicited drinking as routine practice is evident in the words of a woman veteran of operation desert storm. she stated: the majority of alcoholics and addicts are in the military, and most of them don’t know or don’t realize that they’re alcoholics. be[page 46] [qualitative research in medicine & healthcare 2020; 4:9001] article no nco mm er cia l u se on ly cause when you get off duty, you go drink. and that was the norm... it’s just everyday routine (s1019). by referencing excessing drinking as a routine practice accepted uncritically (i.e., most of them don’t realize that they’re alcoholics) in this social arena, this veteran also alludes to the internalization of habitual drinking (i.e., it’s just everyday routine). like many in our study, she also recognized in hindsight that the very ordinariness of drinking among military peers made the routine practice of drinking excessively problematic. veterans also explicitly referenced institutional norms (e.g., regulations) that rescinded economic capital from military personnel who consumed other substances (i.e., illicit drugs) and inadvertently promoted or valorized alcohol consumption. these norms included random drug testing and stronger putative measures enforced against those who screened positive for drug use. if you get caught drinking on duty, you’re going to get your hand slapped and maybe even get some money taken from you, one veteran explained. if you get caught doing drugs on duty, you’re definitely going to get money taken from you (s1013). participants also stated that superiors reinforced institutional norms in the military by ignoring or encouraging drinking. in the excerpt below, a veteran deployed to egypt and iraq who had been an in-patient for alcohol dependency two weeks before participating in an in-depth interview wonders how his experience of re-integration might have been different if superiors had not inadvertently encouraged drinking: and it was very acceptable in the military [to drink]. it still is, yes. even underage, i mean, it’s acceptable. it was a bunch of crap because it should’ve never been accepted for me. it’s almost a shame that it was. i really wish my leaders would’ve taken a little bit better care of me with that. because it could be, it could be a little different now, maybe (s1041). participants thus attributed the embodiment of drinking as routine practice to military service. once embodied, problematic drinking was obfuscated by the very routineness of consuming alcohol among military peers, shared understandings in the military regarding what constituted acceptable levels of alcohol consumption, and institutional norms that rescinded economic capital from personnel who consumed other substances. drinking during deployment overseas while some participants embodied drinking as new recruits and subsequently reproduced that routine practice while deployed overseas, others initially described having begun drinking in the context of deployment. thus, the way in which the context of military service elicited habitual drinking is evident, as well, in narratives centered on alcohol consumption during deployment. to illustrate, a veteran of the conflict in iraq stated: me and my unit got deployed overseas. before i went over there, i didn’t drink, i didn’t smoke, i never even used drugs. my granddad, my uncles were all alcoholics, and it was just never something i ever did (s1027). the words before i went over there, i didn’t drink reveals drinking as a practice that had not been embodied before deployment, despite a family history of alcohol abuse. veterans moreover often recounted in-depth how the structural conditions present in the context of deployment evoked psychological and emotional distress, and how this structural distress in turn elicited habitual drinking. participants described structural conditions, including a sense of lacking control, boredom, exposure to physical threats, witnessing deaths and atrocities, and separation from family and other sources of emotional support, as having been present during deployment. participants often related these conditions, and the structural distress they evoked, to drinking as a routine practice. for example, in the excerpt below, a veteran describes strategically drinking to manage structural distress experienced while deployed to iraq: i kind of was afraid all the time. i had to do my job that was it. but then once i found out that i can get something to drink over there, hey, i felt better. i’d go to bed, get ready for the next day. you’re mentally not there for a minute. that’s what drinking did for me (s1014). the use of alcohol to adapt to the structural distress evoked by contextual conditions present during deployment is evident again in the words of a 44-year-old veteran who remembered drinking to feel mellow. to ease the pain or ease the mental state go to bed (i.e., sleep) (s1014) while deployed to ecuador and afghanistan. likewise, another participant described having consumed alcohol habitually to numb everything out (s1034) while deployed to afghanistan, indicating that drinking was used to cope with unpleasant thoughts and/or emotions and thereby adapt to the context of deployment. the passages above reveal veterans as social agents who strategically engaged in a socially valued and institutionally sanctioned practice to adapt to distressing conditions during deployment. participants thus adapted to structural conditions by reproducing a socially and institutionally valued, routine behavior: habitual drinking. as consuming alcohol, even to excess, was normative and thus perceived as unproblematic by peers and superiors in this context, problematic drinking persisted unchecked if participants could consume alcohol and still perform official duties. to have done otherwise would have violated the values and norms in the masculine-warrior habitus, which rewards combat preparedness with capital. as alcohol was, in some contexts (e.g., iraq, afghanistan), more easily obtained at home than abroad, [qualitative research in medicine & healthcare 2020; 4:9001] [page 47] article no nco mm er cia l u se on ly drinking often increased dramatically during combat leave. the danger of having alcohol readily available after having transitioned to the context combat leave is evident in the following statement from a veteran of the conflicts in iraq and afghanistan: interviewer: let’s talk about your leave time during deployments. s1033: i don’t remember most of them (i.e., combat leaves). i was drunk. as soon as i got off the plane in atlanta, i was drinking. i was drunk when i got off the plane, i was drunk when i got back on the plane, and stayed drunk up until we got to shannon, ireland for refueling. most veterans in our study described having consumed alcohol excessively during combat leave, sometimes to the point of losing consciousness repeatedly. what’s more, they most often recalled drinking in this context to psychologically and emotionally distance themselves from the structural conditions experienced during deployment. veterans thus recounted how habitual drinking helped them manage the uncomfortable thoughts and emotions associated with structural distress, and thereby adapt to structural conditions present during deployment, even while on leave. habitual drinking post-deployment, during re-integration participants also described having uncritically reproduced drinking habits embodied while in the military in a very different context: civilian life. the way problematic drinking was reproduced uncritically as habitual practice out-of-context is explicit, for example, in the words of a veteran who described consuming alcohol to excess as just something that i felt like i have to do most of the time (s1014) as a civilian. other participants described having consumed alcohol habitually after transitioning to the civilian context in a more deliberate manner, often in response to structural distress evoked by this new arena. structural conditions described by participants as having been present in the civilian context included a lack of purpose and meaning and everyday life stressors, such as having to pay bills. the different kinds of distress (i.e., stress, anxiety, uncertainty) evoked by the transition from one context to another are evident in the following narrative from a 34-year-old veteran: interviewer: were there any particular days or experiences that stand out to you during deployment? s1013: a lot of emotions that people deal with that they’ve never dealt with before and haven’t had to deal with the whole time we’ve been in country (i.e., deployed overseas). but now there’s a lot more stress — a lot of different stress. a lot of anxiety, a lot of uncertainty and, you know, you ball that all into the mental psyche where we normally don’t deal with things like that very well (s1013). thus, having successfully adapted to a highly regimented context with an explicit mission and clearly defined roles, many veterans in our study were thrust into unfamiliar and distressing circumstances upon transitioning to the arena of civilian life. the depth of distress evoked by the structural conditions present during re-integration is apparent in the words of a veteran of operation iraqi freedom, who lamented: interviewer: so, what was it like to come home when it was finally time to come home – not on leave, but for real? s1003: how are you happy to be home? how are you happy to come back from killing people? how are you happy to come back from a stress-free life where you didn’t have to worry about nothing but waking up, going on missions, coming back home playing video games? i don’t know man it was… different. it was like the first day of school. for some participants, the very experience of transitioning from one context to another was the primary source of distress. veterans sometimes explicitly related drinking to the experience of transitioning out of the military context, as illustrated by the following description of transitioning to the civilian context during combat leave: interviewer: so, tell me about your leave time. s1003: leave, i got fifteen days. interviewer: okay so what did you do? what do people do on leave? s1003: we got home, man… i trashed so many beer cans and so many bottles. yeah, man, i got messed up; i’m not going to lie. whoo! but that’s all there is to do. i mean, what are you going to do? i mean, you’re transitioning from going to iraq and fighting all day to coming back home and just supposedly being normal. equally distressing for other participants was the way in which the structural conditions present in the context of deployment overseas were reproduced post-deployment. for these veterans, structural conditions were internalized and embodied post-deployment as lived experiences of trauma. although no longer deployed for combat, structural conditions were embodied in the form of post-traumatic stress disorder [i.e., ptsd], depression, and survivor’s guilt, and thus reproduced in the context of post-deployment civilian life. the embodiment of structural conditions as lived experiences of trauma in the form of survivor’s guilt, for example, is apparent in the following passage from an interview with a veteran of operation iraqi freedom: [page 48] [qualitative research in medicine & healthcare 2020; 4:9001] article no nco mm er cia l u se on ly we had one soldier die… he just got back from leave; he had a baby or son, you know, and that was the main thing, just because… i wasn’t married. i didn’t have any kids, i still don’t, you know, and that’s -. that’s the only thing that ate at me really was like: ‘why not me,’ you know? (s1007). in the expert above, the participant explicitly relates lingering trauma in the form of survivor’s guilt (that’s the only thing that ate at me really…) to structural conditions encountered during deployment (we had a soldier die). other participants recounted embodying structural conditions encountered in the context of deployment as moral injury – a profound sense of moral transgression at having witnessed or participated in violence. a veteran who had been deployed to iraq described the lived experience of moral injury thusly: i had two children, so it was like: ‘i can’t believe i just killed somebody and i hope god forgives me for it,’ pretty much. i couldn’t sleep for like four days. it took me two days to even eat, man. i mean, i never had killed anybody before i went to the army. the main thing that really messed with me was my conscious. you always hear what you do unto other people comes back to you… (s1003). after having internalized a habitus which predisposed them to consume alcohol habitually in response to structural distress, participants thus reproduced that routine practice in response to a different set of structural conditions (e.g., survivor’s guilt). having deliberately consumed alcohol to manage the distress evoked by the structural conditions reproduced as lived experience is evident in the excerpt below from an interview with a veteran of the conflict in iraq: it was a party for six months long. drugs and alcohol. that’s all it was, was a party… i was numbing myself from that feeling of what i’ve had to do (during deployment). what i’ve had to see and the feelings that i wasn’t didn’t belong here, you know, i belong back over there [in iraq] (s1028). in the narrative above, both lived experiences of trauma and feelings of not belonging emerge as having elicited problematic drinking in the context of post-deployment civilian life. thus, participants described having binged on alcohol upon transitioning to the civilian arena and, free of institutional constraints, sometimes illicit substances, as well. some participants described habitual drinking as a strategy they used to psychologically and emotionally distance themselves from combat-related trauma. in this respect, one veteran recalled how he was ready to party and just to get drunk after returning home from iraq to distance himself from the structural distress experienced during combat deployment: i was frustrated, he recounted. i lost friends; saw innocent kids get blown up in a bus, he explained. i just wanted to get away from that. i just wanted to get drunk and spend all my money (s1004). other participants described having consumed alcohol habitually in response to the lingering effects of physical trauma in the civilian context. for example, one 50-yearold veteran drank habitually during each of three deployments, subsequently reproducing that routine practice by drinking routinely until inebriated in the civilian arena. i drink by myself, he stated. that’s what i used to do when my back was hurting or something to take my mind off it (i.e., the pain) (s1039). thus, the participant described drinking as a way to cope with physical trauma during deployment (i.e., that’s what i used to do when my back was hurting) which was reproduced as routine practice as a civilian (i.e., i drink by myself). as drinking had been embodied as routine practice during military service and was furthermore routine in the context of the military, veterans who habitually consumed alcohol in large quantities often did not immediately recognize how problematic this behavior was in a very different post-deployment context. the way in which drinking was both a routine practice elicited by distress and obfuscated by an internal habitus of perceptions is apparent in the following statement from a veteran who had served overseas in ecuador and afghanistan: and it’s like they (i.e., the military) turn on a switch, but they don’t turn back off the switch. but then when i got home, i didn’t even realize, you know, that i had a [drinking] problem. i came home and i wasn’t even home 24 hours and i was drinking! and i wasn’t drinking once a week. i was drinking every day. it was a downhill battle from day one (s1034). echoing his words, a female veteran of operation desert storm described how an internal habitus embodied through socialization in the military structured her perception regarding what constitutes acceptable levels of alcohol consumption in a very different context. she stated that: it’s okay, you know, to be an alcoholic [in the military], because they’re not realizing that it is a problem. and then you trying to live this everyday life without the military, and you’re sitting at home — you can’t function because you’ve got to drink all day, you know? you got issues because you’re not in the military anymore and you’re trying to medicate it, and so you think it’s okay, but it’s not okay (s1019). participants thus described a disjuncture between a habitus in which drinking was routine and the civilian [qualitative research in medicine & healthcare 2020; 4:9001] [page 49] article no nco mm er cia l u se on ly arena in which such behavior was more often perceived as problematic, or hysterisis. participants often described the consequences of habitual drinking out-of-context upon re-integration. for example, a veteran deployed to beirut, granada and the honduras who had lost a couple of jobs from drinking post-deployment recalled that: when i first got out [of the service], i got into fights all the time. all the time. i was working at a penitentiary up there, too and i got to shooting at people and stuff. he furthermore recounted how drinking as routine practice post-deployment had disrupted his marriage: i’d go out and i wouldn’t come home. i started drinking really heavily, and after 16 years, my wife said ‘i just can’t take this no more’ because it wouldn’t stop (s1039). such passages illustrate how reproducing once normative practices out-of-context resulted in a loss of capital in participants’ civilian lives. as all veterans screened positive for alcohol misuse in order to participate in our study, their narratives often revealed promising lives come undone because of a socially valued and institutionally sanctioned practice embodied during military service and reproduced during re-integration. for some participants, drinking as routine practice outside the context of the military had devastating consequences, as it no longer resulted in the accrual of either social or economic capital. in another example, one veteran who had been deployed to afghanistan recounted how: i didn’t realize i had a [drinking] problem until two years later (i.e., after leaving the military). it’s that so many things happened. i lost my house. i owned a house before i went over there [to afghanistan]. and i lost my family. i lost my kid. i mean, you name it it happened (s1034). as vividly illustrated by the narratives above, once embodied as an adaptive strategy, the routine practice of drinking was reproduced habitually in response to distress evoked by structural conditions present in the context of civilian life. removed from a social arena in which it was adaptive and rewarded, the routine practice of drinking became highly problematic, resulting in a loss of social and/or economic capital. thus, not only was habitual drinking out-of-context post-deployment, it was often deleterious to re-integration for our participants. discussion during substance use life history interviews, veterans made sense of their problems with alcohol and difficulties re-integrating vis-à-vis institutional norms, shared beliefs about drinking, and social values and expectations learned in the context of military service. participants described drinking as a routine – even expected – behavior in the context of life on military bases at home and abroad. they also repeatedly recounted how the very ordinariness of drinking in the military obscured a potentially deleterious practice that might, in other contexts, have been condoned and punished rather than tolerated (by superiors) and rewarded (by peers). although reflecting the experiences of a subset of veterans who began drinking excessively while in the military and reproduced that habit during reintegration, these narratives lend support to the assertion by fuehrlein et al.27 that: heavy drinking may often be normalized in military culture and such normalization may increase the likelihood that vulnerable veterans will develop alcohol use disorder. interpreting veterans’ substance use trajectories through the lens of practice theory lends fresh insights into alcohol misuse by veterans. our analysis revealed drinking as an adaptive strategy that was, for many veterans in our study, initially embodied to accrue capital and subsequently employed to adapt to structural conditions which placed them at physical, emotional, and psychological risk during deployment. drinking allowed participants to numb the unpleasant thoughts and emotions evoked by structural conditions while maintaining the appearance of physical and emotional toughness and selfcontrol that are so highly valued in the military. this illusion likely protected them from the negative consequences of violating social expectations and institutional norms. it also allowed participants to exert their agency over internal (i.e., distress) and external (i.e., social expectations) conditions present in the military context. as deployment is time-limited, consuming alcohol often helped participants manage structural distress successfully in the short term, with few negative consequences. however, having learned to uncritically use alcohol to adapt to structural distress subsequently elicited this practice out-of-context post-deployment. the mismatch between an internal habitus in which drinking was normative and the social arena veterans encountered in their lives as civilians resulted in hysteresis. as a result of this mismatch, a once-adaptive behavior was out-of-context, and therefore constrained participants’ agency to reintegrate post-deployment. practice theory thus rendered explicit, for the first time, the implicit cultural and social processes by which drinking habits learned during military service may be reproduced by veterans. to be clear, we do not claim that participants had no choice but to respond to distressing conditions by drinking excessively. on the contrary, social actors deliberately and strategically internalize practices that help them adapt to structural conditions. problematic drinking is furthermore a complex phenomenon at the intersection of many lived experiences, such as genetics and gender, that did not emerge from our analysis. rather than objective facts, our findings thus reflect participants’ subjective sense of how their problems developed. their biographies suggest that embodying drinking as routine practice in the military arena predisposed them to uncritically reproduce this behavior in response to distress encountered as civilians. [page 50] [qualitative research in medicine & healthcare 2020; 4:9001] article no nco mm er cia l u se on ly thus, routines embodied during military service constrained participants’ ability to choose healthier strategies for managing distress. after all, individuals can only practice habits which they have learned. using a bourdieusian framework to explicate why participants reproduced problematic drinking habits postdeployment aligns with recent work using practice theory to explain the re-integration of veterans into civilian life.28 in this research, the authors described the distress that veterans from the united kingdom experienced during the difficult transition from a military to civilian habitus, and how that impacted their reintegration. veterans in our study likewise described distress evoked by conditions present in the civilian context and how they consumed alcohol to cope with that distress. together, these studies reveal reintegration as a vulnerable period for some veterans that may require intervention. findings from our study furthermore provide important context for quantitative evidence correlating substance misuse among veterans with ptsd, negative emotionality and depression,29 survivor’s guilt,30 combatrelated physical trauma1 and military sexual trauma.31 participants described these problems as having been rooted in the structural conditions present in the military context. we have labelled the cognitive and emotional distress evoked by these structural conditions structural distress, thereby firmly situating conditions such as ptsd, moral injury, and survivor’s guilt within a bourdieusian framework. moreover, using passages from the interviews to illustrate how structural distress was embodied as lived experiences of ptsd, survivor’s guilt, and moral injury expands the scope of practice theory to explain the development of trauma-related disorders. healthcare providers should understand that drinking excessively is, for many veterans, a learned behavior that was rewarded and valorized during military service. as consuming alcohol likely initially helped some former military personnel who subsequently develop unhealthy drinking habits cope with structural conditions during deployment, healthcare providers could explicitly acknowledge the adaptive purpose that drinking once served. establishing rapport in this way could help providers to work with veterans to help them recognize the mismatch between context and habitus which renders drinking excessively out-of-context in their lives as civilians, and thus no longer results in an accrual of capital. findings regarding the role played by alcohol in managing structural distress, combined with participants’ accounts of how norms and shared understandings in the military habitus obfuscated the negative consequences of excessive drinking, suggest that multi-faceted treatment approaches for alcohol misuse will be most effective. for veterans, engagement in evidence-based treatments (i.e., cognitive behavioral therapy), which help people embody healthy strategies for coping with the distressing thoughts and emotions which trigger substance use could be enhanced by concurrently delivered group therapies in which peers share their experiences and support one another through treatment. however, it is worth noting that routinely drinking to excess was embodied while veterans were still in the military. as such, the most effective interventions are likely to be those which target active duty personnel and are proactive, rather than reactive, occurring early in the military socialization process. interventions aimed at building psychological resilience constitute pro-active strategies. psychological resilience generally refers to the interand intra-personal process of adapting to and coping with stress and adverse life experiences (i.e., trauma). resilience is multi-faceted, encompassing factors at the individual(e.g., positive coping behaviors, affect and thinking, behavioral control), family(e.g., emotional ties, communication, support, adaptability), and community-level (e.g., cohesion, collective efficacy). in the military context, resilience also includes unit-level factors (i.e., positive command climate, teamwork, cohesion).32 many factors associated with resilience, such as coping, behavioral control, and adaptability, align well with the bourdieusian concepts which emerged from analysis of the in-depth interviews, suggesting that resiliencebased interventions would resonate with active and former military personnel. interventions that build resilience furthermore emphasize prevention rather than treatment and thus encourage the embodiment of routine practices early in the military socialization process, which our findings indicate is critical if the goal is to reduce problematic drinking and improve re-integration experiences. there thus exists a close fit between practice theory, which aligned with participants’ own understanding of how their problematic drinking developed and their reintegration experiences, and resilience-based interventions. the u.s. military has already begun implementing resilience training as part of a broader strategy aimed at increasing access to mental health services. these programs include defenders edge, implemented by the u.s. air force, comprehensive soldier fitness and battlemind, implemented by the u.s. army, and life guard, implemented by the national guard.33 as in the present study veteran participants explicitly described having consumed alcohol to manage structural distress, such programs may indirectly reduce problematic drinking by providing healthier ways to cope with unpleasant thoughts and emotions. evidence that psychological resilience may reduce excessive drinking in former military personnel comes from a recent study in which higher levels of psychological resilience correlated with lower rates of problematic drinking in iraq and afghanistan veterans exposed to combat.34 although initial evidence suggests that enlisted military personnel perceive interventions which build psychological resilience as helpful,33 a recent review of resilience training for active duty military personnel found wide [qualitative research in medicine & healthcare 2020; 4:9001] [page 51] article no nco mm er cia l u se on ly ranging differences in treatment effectiveness.35 findings from this review indicate that a lack of leadership support, logistical problems, limited funding, poor fit with military culture, and mental health stigma have hampered the effectiveness of these programs.35 situating these findings in relation to results from our study suggests that future research is needed to explore the adaptive practices of active duty military personnel who chose not to embody habitual drinking to identify potential resilience-enhancing habits aligned with the masculine-warrior habitus. this formative research would ensure that interventions aimed at building resilience are acceptable, and evidence based, potentially reducing some barriers to program effectiveness. our findings indicate that it may also be necessary to adapt resilience programs to the different structural conditions encountered during military service (e.g., basic training, deployment, post-deployment) and to deliver these interventions longitudinally to achieve maximum effectiveness. as elucidated by practice theory, the success of such programs will also require a broader cultural shift in the military whereby less problematic coping and social behaviors are rewarded and valorized by peers, valued and encouraged by superiors, and receive institutional support in the form of funding. conclusions framing participants’ biographies via practice theory supported the development of a hypothesis relating military culture to problematic drinking by arkansas veterans. during substance use life history interviews, veterans described how social expectations, shared understandings and institutional norms in the military elicited drinking as habitual practice. participants furthermore described this socially and institutionally patterned behavior as having been strategically used to manage structural distress during deployment on military bases overseas, often successfully and with few negative consequences. the deleterious consequences of a once adaptive practice reproduced uncritically out-of-context, however, were evident in poignant narratives in which participants described their difficulties re-integrating and living life as civilians. qualitative findings revealing the way in which practices embodied and rewarded during military service can be uncritically reproduced out-of-context suggest that interventions aimed at teaching new recruits healthy coping strategies could, over time, reduce rates of harmful alcohol use by u.s. veterans. references 1. barlas f, higgins w, pflieger j, et al. 2011 health related behaviors survey of active duty military personnel [internet]. fairfax, va: icf international, inc.; 2013. available from: https://apps.dtic.mil/dtic/tr/fulltext/u2/a582287.pdf 2. bray rm, hourani ll, rae kl, et al. 2002 department of defense survey of health related behaviors among military personnel [internet]. research triangle park, nc: research triangle institute; 2003. available from: https://apps. dtic.mil/dtic/tr/fulltext/u2/a431566.pdf 3. mattiko mj, olmsted klr, brown jm, et al. alcohol use and negative consequences among active duty military personnel. addict behav 2011 36:608-14. 4. ames gm, cunradi cb, moore rs, et al. military culture and drinking behavior among u.s. navy careerists. j stud alcohol drugs 2007;68:336-44. 5. gibbs da, rae olmsted kl, brown jm, et al. dynamics of stigma for alcohol and mental health treatment among army soldiers. mil psychol 2011;23:36-51. 6. mash hbh, fullerton cs, ng thh, et al. factor analysis of the drinking motives questionnaire in a young adult u.s. army sample. 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[qualitative research in medicine & healthcare 2020; 4:9001] [page 53] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2018; 2:8012] [page v] to our readers, reviewers, authors, members of our boards, our amazing managing editor francesca baccino, and to all of those who consider submitting and whose work i imagine delighting in, this is the closing of a year. the last issue of 2018. it is a time for counting blessings, for standing still and looking backward at all that has transpired, for taking it in. for acknowledging all that we have sown and have yet to reap. i expect much to change for qualitative research in medicine and healthcare (qrmh) in the following year: we will be adding members with national and international profiles to our editorial board, i will work with the university librarian at the university of south florida to get the journal ranked on scopus, and, i am sure, the number of submissions will no doubt increase. the standard of published work will no doubt keep getting higher (and so i will have to reject more). in this respect, i have modified the instructions for authors. i will no longer accept manuscripts written in the passive voice or third person. i ask that authors be accountable for the knowledge they produce. i ask for methodological explication and close analyses of data: no glosses and no assumptions of what is taken for granted. before you submit, take a look at what the journal publishes. and to know what methodological and analytical excellence looks like, take a look at the five studies in this outstanding issue, for they truly do the journal justice, fully capturing where qrmh is now, as well as the promise of the work that is yet to come. each of these five works accomplishes three very important things. first, they collectively speak to a methodologically innovative, interdisciplinary, and accountable program for qualitative research in healthcare. second, they open up a dialogic, reflexive space for researchers and informants to inhabit, underscoring how research is a generative process, where outcomes and findings can only be part of an ongoing hermeneutic circle that is never fully closed, and always contingent and open to further conversation. finally, the articles in this issue demonstrate that empirical work is always ontologically and practically consequential. by this i mean to say that our forays into epistemology matter, for they materialize medicine and healthcare in our everyday experiences and praxis, for all of those involved. scholarly discourse is not separate from the everyday lives of patients and practitioners; because discourse is action, academic research creates, authorizes and entitles experience. it is a powerful voice in a conversation and it rarely speaks in the first person; instead, speaking in the name of data and findings, scholarly discourse is part of its institutionalization or taken for granted. if, in constructing dialogic studies we instead allow informants speak as fully realized agents, then we can actually listen to what they say instead of argue that we give them voice as a popular gloss likes to claim. for our job is not to speak for others or give them power, as they are not deficient or less than, and all our research need do is acknowledge this. this may of course complicate things, put our theories at risk, our own knowledge in question, and even our own power to declare who is powerless. accordingly, constructing responsibility in social interaction: an analysis of responsibility talk in hospital administrative groups, a study of communicative dynamics conducted in a finnish hospital by eveliina pennanen and leena mikkola shows how responsibility is not in people, but in the multiply embedded relations of accountability between them. as such, institutions are not structures inhabited by agents, but living social interactions that should “not be taken for granted as stable and fixed constructions” (p.163). editor’s introduction mariaelena bartesaghi department of communication, university of south florida, tampa, fl, usa correspondence: mariaelena bartesaghi, department of communication, university of south florida, cis 1040, 4202 e. fowler ave, tampa, 33620 fl, usa tel.: +1.813.974.2145 fax: +1.813.974.6817. e-mail: mbartesaghi@usf.edu received for publication: 20 december 2018. accepted for publication: 20 december 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright m. bartesaghi, 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:v-vi doi:10.4081/qrmh.2018.8012 qualitative research in medicine & healthcare 2018; volume 2:v-vi no nco mm er cia l u se on ly in waging a professional turf war: an examination of professionalization as a strategic communication practice used by registered dietitians, sarah n. heiss, kristin k. smith, and heather j. carmack examine the constitutive power of language in use. arguing that the terms used in the professional dietitian community are much more than semantic designations, but rather index access to epistemic claims, professional branding, and embattled dynamics of what consumers end up knowing about nutrition as a whole, the authors connect communicative identities to institutional legitimacy. again, epistemology and ontological consequences are inextricable, especially considering the spread of knowledge by public discourses and social media. the last three studies, situated in norway, the u.s. and denmark, respectively, offer examples of how participatory engagement opens up the research process as a site for creating rather than producing findings. in meeting complexity with collaboration: a proposed conceptual framework for participatory community-based music therapy research in end of life-care, schmid takes a constructivist paradigm to consider the multiple possibilities and actualizations of diverse realities between healthcare workers and patients and how researchers, as themselves participants, may act to bring them about. in his reflection about dialogic research in creating a bridge between patients and healthcare practitioners, schmid writes that issues emerging in the process are always explicit part of the process itself “to be dealt as process. the emergent nature of social relationships with communities means that ongoing evaluation and researcher self-reflection are crucial (p. 152). like ryan logan, schmid’s participatory method practices dialogue as generative of research-making, creating outcomes that account for the roles of participants alike. in his inspiring not a duty but an opportunity: exploring the lived experiences of community health workers in indiana through photovoice, anthropologist ryan logan discusses the potential of photovoice as a participatory methodology that not only captures but, reflexively, creates a community of poorly represented healthcare workers who take their own photographs. by being involved in the production, selection, interpretation, and analysis of the photographs, logan’s study participants envision the every community work that they are engaged in, thus (as i see it) enacting it and materializing it in their practices. finally, jannie uhre’s the dialogic construction of patient involvement in patient-centered neurorehabiltation, closes this beautifully accomplished issue by examining subject matter that is very dear to me, namely, how institutions are nominalizations: that is, are none other than a trick of language. as noun-verbs, they have the appearance of being static structures occupied by communication processes, but are in fact ongoingly produced, negotiated, and lived in by and through social interaction. they are, if a researcher takes a social interaction approach, what wittgenstein would call forms of life. and by looking closely, as uhre does by way of a dialogic methodology, discursive configurations where the very categories of patient and practitioner are themselves contingent on the work of communication. i am writing fast to get this issue out in time for all of you to read and take in the work of our authors, so, once again, i urge you to read the work in order to fully grasp what is at issue, and the caliber of work that qrmh is publishing and, with your continued support (and submissions!) will publish. [page vi] [qualitative research in medicine & healthcare 2018; 2:8012] editorial no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2020; 4:9077] [page 83] introduction the last decade has witnessed considerable growth in complications resulting from over-sedation during endoscopy, with respiratory depression and subsequent hypoxemia the most commonly reported.1,2 in a report from the joint commission in 2017 about the standards for hospital requirements,3 inadequate monitoring during sedation accounted for 58% of cases of respiratory depression. given the inherent risk with sedation, the european board of anesthesiology4 in 2011 and the american society of anesthesiology5 in 2010 updated their recommendations and emphasized that ventilation must be monitored via capnography during moderate and deep sedation outside the operating theatre. capnography is a sensitive monitor that works as an early warning system of respiratory depression and apnea before the development of subsequent hypoxemia.2 adequate interpretation of capnography requires practitioners to have a thorough understanding of monitoring parameters and the technical aspects of capnography equipment.6 the consensus in the literature is that capnography monitoring has great value for patient safety and adequate ventilation during endoscopy sedation.7-10 however, recommendations for the routine use of capnography during sedation have raised questions about the burden of false alarms and the cost of purchasing equipment and training practitioners.8 the literature regards the skills of the monitoring practitioner as essential for the adequate interpretation of capnography parameters.9 however, less is known about how capnography might influence staff behavior, and how they use this advanced technology to assess ventilation during sedation. egan10 argued that introducing and implementing capnography successfully in the endoscopy unit provides practitioners the ability to monitor patients’ ventilation under sedation with greater confidence. however, langa focused ethnography of how endoscopy practitioners utilize capnography in sedated patients deemah aldossary,1 sherran milton2 1department of anesthesia technology, prince sultan military college of heath sciences, dhahran, saudi arabia; 2school of healthcare sciences, cardiff university, cardiff, united kingdom abstract the literature shows that respiratory complications are common with sedation. given the inherent risk, capnography monitoring is recommended whenever sedation is administered. we aimed to explore sedation practitioners’ behavior patterns and perceptions regarding capnography monitoring during endoscopy sedation and examine how capnography influenced clinical decision making when assessing respiration. we conducted a focused ethnography with triangulated observations and semi-structured interviews, and we purposively sampled and recruited five sedation practitioners as participants at a hospital in saudi arabia. through data analysis, we identified representative themes and found cultural differences between anesthesia practitioners and nurses when using capnography during sedation. anesthesia practitioners linked safety and the use of capnography to maintain adequate respiration, while nurses believed capnography was a secondary supportive monitor to patient observation and assessment. findings also captured the unique cultures and values of each professional group to be associated with the varying perceptions. we also identified several factors facilitating and barring adequate utilization of capnography. in conclusion, professional culture, hospital policy, knowledge and previous experience with capnography guided the monitoring practice of endoscopy practitioners when assessing respiration during sedation. correspondence: deemah nassir aldossary, department of anesthesia technology, prince sultan military college of heath sciences, dhahran 34313, saudi arabia. tel.: +966 544807995. fax: +966 13 8440000. e-mail: deemah@psmchs.edu.sa key words: end-tidal co2; ventilation; perception; patient safety. funding: this work was supported by the saudi arabian cultural bureau in london. conflict of interest: the authors declare no potential conflict of interests. acknowledgements: the authors would like to thank dr. mohammad albeshir, who helped us to enter the field and recruit participants. received for publication: 3 may 2020. accepted for publication: 14 september 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:83-93 doi:10.4081/qrmh.2020.9077 qualitative research in medicine & healthcare 2020; volume 4:83-93 no nco mm er cia l u se on ly han et al.11 reported that capnography was underutilized for sedation outside the operating theatre despite its availability and updated standards supporting its use. further, langhan suggested that practitioners were unfamiliar with capnography, leading to poor utilization patterns. in this focused ethnographic study, we aim to explore sedation practitioners’ behavior and perceptions towards capnography during endoscopy sedation; and how capnography monitoring influences clinical decision-making while assessing ventilation during sedation. we will also identify the factors facilitating and barring the use of capnography. materials and methods design in this qualitative research, we used a focused ethnographic design, a suitable pragmatic approach to capture specific cultural perspectives of the practice of capnography monitoring during endoscopy sedation. brewer12 has defined ethnography as the study of people within their cultural context to explore and reveal their behavior, beliefs, knowledge, and shared social meanings. a focused ethnography typically addresses a specific shared experience within a sub-cultural group rather than the entire community.13 within this focused ethnography, practitioners shared the specific feature of using capnography monitoring during sedation. we formulated pre-determined aspects of inquiry before entering the field, and we limited the observation to a short period due to the nature of focused ethnography.13 ethnographic findings describe individuals within a holistic perspective and generate a basis for future cultural changes in practice. sample and setting we conducted the study in the endoscopy unit of a large regional hospital in the eastern province of saudi arabia. a focused ethnography usually involves a limited number of participants,14 and we used purposive sampling to recruit key individuals as participants. according to patton,15 purposive sampling in qualitative research facilitates access to key informants who have knowledge of and experience with the phenomenon of interest, which is suitable for this focused ethnography. the sample consisted of sedation practitioners: anesthetists, anesthesia technicians, and endoscopy nurses. the director of the research center at the hospital introduced us to a gatekeeper (someone who has access to the field), and we worked closely with him to choose a list of potential participants. the inclusion criteria were as follows: individuals who were an anesthetist, anesthesia technician, or endoscopy nurse; working in the endoscopy unit; involved with patient monitoring during sedation; had more than three years’ experience working in endoscopy sedation; and agreed to take part in the study. we initially approached seven participants, and five agreed to take part in the study. the final sample consisted of two anesthetists, one anesthesia technician, and two sedation nurses. entrance to the field and recruitment we gained access to the site after obtaining ethical approval from the hospital. the gatekeeper arranged entrance to the endoscopy unit and recruitment of key participants. data collection we conducted the study in two phases. in the first phase, we performed non-participant observation to explore the practice of capnography monitoring during sedation; and in the second phase, we carried out semi-structured interviews of the same study participants were observed. observations and field notes observation allows an exploration of culture by capturing behavior patterns in a continual and dynamic manner.12 we deemed the non-participant observation as a suitable approach for this focused ethnography.16 nonetheless, collecting cultural data requires some degree of participant observation to enable researchers to experience the lives of participants under study.17 however, we could not perform participant observation based on the ethical approval, which limited our involvement to observe and not interfere with practice. we took every opportunity to spend time in the field to observe the practice of capnography monitoring during sedation within a predetermined timeframe, from 25 november 2018 through 30 december 2018. we had limited time in the field; thus, we regarded focused ethnography as appropriate14 to obtain practitioners’ perceptions of the use of capnography monitoring during sedation. we had a genuine concern in the field to not disturb practitioners as they were performing their duties, so we maintained distance from participants as they were administering sedation and approached participants only as circumstances allowed. for example, we maintained distance during the induction of/recovery from sedation to avoid distracting the sedation team. we did not observe participants in a particular order, but based on the availability of practitioners and the number of scheduled cases from 8 am through 2 pm. endoscopy cases took place three days per week, with seven to nine cases performed each day. the more sophisticated and combined procedures (e.g. esophago-gastro-duodenoscopy and colonoscopy) took place in the morning, when anesthetists performed deep sedation. the endoscopy unit was quieter in the afternoon, when generally nurses administered moderate sedation under the supervision of the endoscopy physician, mostly for colonoscopies. each observation session lasted 20–50 minutes, depending on the procedure. [page 84] [qualitative research in medicine & healthcare 2020; 4:9077] article no nco mm er cia l u se on ly the overall context of the observation was fundamental to the quality of the data we collected.17 the process of describing what we observed led to focused observation of participants while using capnography. we included in our field notes descriptive details of the people, place, noise, location of monitoring equipment in the room, and so on. were recorded the field notes by hand with the aid of an observational checklist we constructed and validated by two anesthesia consultants for appropriateness and clarity. observational checklists allow researchers to focus on recording what is relevant to the study objectives.17 we indicated the date, time, pseudonym of the participant, and the duration of the observation period in each checklist and field note. we maintained close proximity to participants and focused on recording how participants used capnography, how they responded to alarms, how they interacted around capnography whenever there was an alarm, and how and when they initiated an intervention based on capnography alarms. during observations, we only jotted short notes; we accessed a private room to write full descriptions at the end of each observation session. semi-structured interviews we adopted the interview approach from bryman.18 we relied on a pre-determined interview guide, consisting of standard questions to allow data comparison among participants. however, we asked additional questions when needed to expand upon certain points that emerged in a reflexive manner during observations. we started each interview by collecting demographic information, followed by asking relatively straightforward, factual questions such as “how many years have you been practicing sedation?”, to help establish rapport with the participant. we used probes to confirm the data we collected were relevant to the objectives of the study. we discussed four main themes in the interviews: sedation practice and patient safety culture, sedation complications and subsequent interventions, capnography monitoring and performance, and factors facilitating and barring the use of capnography. we drew these themes from the literature and discussed them repeatedly to ensure they were credible and representative. we interviewed participants individually for approximately 15–20 minutes in a private room in the endoscopy unit after completion of observation sessions. we audio recorded interviews and transcribed them verbatim. triangulation collecting data from a range of sources is known as data triangulation.14 this approach allowed us to explore the phenomenon from multiple perspectives to meet the research objectives.19 we combined the findings from observation and interviews to produce a comprehensive picture of the phenomenon that neither approach could provide alone. triangulating data maintains rigor and increases the credibility of the findings of qualitative research.20 ethical consideration this study was part of a master’s student project at cardiff university. the study commenced on 25th november 2018 after obtaining the necessary ethical approvals by the ethics committee of cardiff university school of healthcare sciences and by the regional hospital in saudi arabia. we sent an information sheet to all participants, and obtained a signed written consent before beginning the study. we adhered to the guidelines of cardiff university21 and the data protection act22 when collecting and holding data. in order to ensure the anonymity of participants, we assigned them pseudonyms to protect their identities. analysis observational data analysis we initiated analysis by repeatedly reading the descriptive field-notes to understand the experiences of participants and compare the different layers of data with one another. we then re-read the data to generate initial codes. based on ryan and bernard’s23 method of coding, we grouped codes according to similarity to generate representative themes. we repeatedly broke down, reassembled, and compared themes to provide an explanation, and once no more information emerged, we then addressed the next concept. analysis of semi-structured interviews we analyzed the interviews following guidance by steinar kvale24 for interviews in-depth analysis. we used one of kvale’s modes of interview analysis: analyzes focusing on meaning, as summarized in table 1. rigor fieldwork requires a degree of flexibility and adaptability to overcome challenges.17 we maintained a reflexive diary to remain objective in the field and avoid letting personal interpretations to obscure the participants’ reality. to ensure the trustworthiness of the study,20 we recorded emotions, feelings, thoughts, and impressions as they occurred. we also maintained an audit trail to support a clear transition from coding to final themes. an audit trail describes how we transparently collected and analyzed data in a logical way,25 and includes examples of the coding process and descriptions of the grouping of codes into relevant, meaningful themes. to minimize bias, we analyzed all data together after completing the data collection. results five sedation practitioners agreed to take part in this study. we observed participants when monitoring their sedated patients, followed up by interviews. the participants were two anesthetists, one anesthesia technician, and two sedation nurses. table 2 provides a systematic description [qualitative research in medicine & healthcare 2020; 4:9077] [page 85] article no nco mm er cia l u se on ly of the observations based on tattersall’s five w’s approach26 to systematically describe a situation. table 3 presents a summary of participants’ characteristics. data analysis revealed representative themes, and we grouped themes four main categories: safety culture of endoscopy sedation, professional identity and role in safe sedation practice, personal experience and knowledge about capnography performance, and facilitators and barriers to the utilization of capnography. we present themes and illustrative quotes below, triangulated with the observations. [page 86] [qualitative research in medicine & healthcare 2020; 4:9077] article table 1. summary of kvale’s steps for interviews in-depth analysis. step action taken reading the transcript browse all transcripts → make impression notes → read transcripts one by one → re-read transcripts → read transcripts line by line labelling, coding label words, sentences, or sections with relevant concepts, actions, similarities, and differences condensing, “grouping codes into categories or themes” read all codes → identify most important codes → combine two or more codes and/or create new codes → condense long and thick descriptions into short meaningful ideas or concepts → organize codes with similar content into meaningful categories or themes describing categories examine categories and summarize the content of each category into descriptive text → decide which categories are most relevant to the study aim and objectives → conceptualize underlying patterns organizing categories organize categories to identify emerging concepts and persistent patterns of behavior and beliefs among respondents → describe connections between categories → group similar categories → final categories or themes looking for meaning inspect categories for meaningful text → interpret meaning → summarize findings verifying check credibility of the analytical process by reviewing/discussing codes and final themes reporting communicate the findings table 2. tattersall’s approach: five w’s to describe observational activities. what • we observed five participants from the beginning of a sedation period until recovery. we focused the observations on how participants used capnography; how they responded to alarms; how they interacted around capnography whenever there was an alarm; and how and when they initiated an intervention based on capnography alarms. anesthetists performed deep sedation (by propofol + fentanyl) and nurses administered moderate sedation (by fentanyl + midazolam) under supervision of the endoscopy physician. • the anesthetist was present throughout the whole endoscopy procedure during deep sedation, but not during moderate sedation. • most performed endoscopies were colonoscopies and esophago-gastro duodenoscopies. • participants administered supplemental oxygen to all patients using a face mask or nasal cannula. • applied monitors included standard monitors (blood pressure, ecg*, and pulse oximeter) + capnography. • all participants used capnography monitoring, either through the anesthesia machine or portable capnography device. • participants encountered complications with sedation such as, spo2 <75**, bronchospasm, and overshoot of sedation. • participants performed interventions in response to capnography such as, head tilt and chin lift, verbal/physical stimulation, bag-valve ventilation, nasal airway adjunct application, and procedure interruption. where we conducted observations in the endoscopy unit when we conducted observations within a pre-determined timeframe, from 25 november 2018 through 30 december 2018. who refer to table 3 why we aimed to explore practitioners’ behavior while using capnography monitoring *ecg, electrocardiogram; **spo2, percentage of oxygen saturation. table 3. summary of participants’ characteristics (n=5). demographic characteristic participant 1 participant 2 participant 3 participant 4 participant 5 pseudonym martin joe alex sara mary gender male male male female female age 48 36 56 34 27 profession anesthetist anesthesia technician anesthetist sedation nurse sedation nurse qualified (years) 17 years 13 years 25 years 12 years 7 years experience with endoscopy sedation (years) 5 years 10 years 15 years 9 years 4 years prior experience with capnography in other hospital settings yes yes yes no no no nco mm er cia l u se on ly safety culture of endoscopy sedation it is important to explore sedation practice in order to understand how sedation practitioners utilize capnography during sedation. within this theme, we captured a shared perception of the importance of safe sedation practice. during observations, participants used capnography as part of hospital policy during sedation. participants shared similar views of what constituted safe sedation, considering hospital policy as a major element for safe sedation practice. participants recognized the value of capnography to avoid respiratory complications and maintain adequate level of sedation. martin stated: “wherever sedation is administered, we use capnography and it’s safe, but if capnography was not available, definitely there would have been complications”. alex added: “simply patient safety comes first, and we are simply following standards”. sara also stated that it was: “very rare [that] we have a complication”. one participant (mary) believed that sedation complications were not serious in nature, and are easily managed: “i cannot consider them as serious complications. they are only the side-effects of medications we are giving, like midazolam and fentanyl”. mary believed that patient assessment is what ensured safe sedation: “actually sedation is safe as long as you assess the patient correctly”. observations of mary were consistent with this statement, as she mainly relied on patient observation and assessment and only briefly glanced at capnography data. ultimately, participants shared the notion that they delivered sedation safely in the endoscopy unit with the aid of what they perceived to be adequate monitoring practice. professional identity and role in safe sedation practice within this theme, we explored the different professional cultures of anesthesia practitioners and nurses in terms of values related to patient safety and responsibilities during sedation. anesthesia practitioners were responsible for establishing a patient safety culture, while nurses were only expected to be a team player. anesthesia practitioners established the patient safety initiatives for the whole sedation team. martin said: “because of the efforts of the manager of off-site location anesthesia, we always work up-to-date during sedation regarding guidelines and equipment. we go according to any advances in patient safety in anesthesia”. alex also stated: “when sedation is performed by non-anesthetists, they have to consider all [of] the safety precautions for the patient when performing sedation. (…) as part of our sedation policy, capnography is a must, whether under anesthesia care or not under anesthesia care”. nurses were not involved in establishing the policy for safe sedation. mary said: “the anesthesia department is encouraging us to use the capnography monitoring when we are giving sedation”. anesthesia practitioners perceived the notion of taking responsibility of patient safety as part of their professional identity, and they expressed their support to prepare endoscopy nurses to perform moderate sedation independently. alex stated: “deep sedation is only performed by anesthetists, and we have two standard courses to prepare nonanesthesia physicians and nurses for [administering] moderate sedation, and they have to go through those two courses to work in sedation”. anesthesia practitioners appreciated working alongside nurses; they believed that nurses contributed to patient safety and stressed the need to have competent nurses as members of the sedation team. alex said: “a couple of years ago, sedation was only given under anesthesia care, but for five years now, moderate sedation is given without supervision of anesthetists, and have not recorded major complications. we have key performance indicators that we are monitoring for complications: any aborted or admitted patient; any code blue; any airway obstruction, and we have no complication recorded up until now. (…) sedation nurses—of course—have to go through a couple of courses before they are allowed to perform sedation and other courses to maintain being privileged. they are trained under anesthesia for ten to fifteen cases, and then they are left alone to perform sedation and to monitor their patients”. nurses described their role in the sedation team as clear and well defined, and their responsibility was proportional to the training they possessed. sara said: “there is a policy for nurses to do sedation: one sedation nurse and a doctor, and to be a sedation nurse, we need to pass a few courses, and then they [anesthetists] will check all the actual given sedation cases under the supervision of anesthesia, and you will do the airway management course, and every two years you need to renew. we also have formal training to deal with the equipment”. although the nurses felt they were trusted to maintain patient safety standards during sedation, they often did not use capnography adequately with sedated patients during observations. nurses also expressed themselves to be self-sufficient professionals who demonstrate confidence [qualitative research in medicine & healthcare 2020; 4:9077] [page 87] article no nco mm er cia l u se on ly in their work and abilities to perform moderate sedation and monitor their patients. mary said: “hmmm if you are a sedation nurse and you are allowed to do sedation, i think you would have the knowledge to read capnography because it is included in our training: that’s how we get privileged”. despite the fact that nurses felt they were privileged, during observations, nurses did not seem like a full member of the team when asking questions and/or seeking help and were reluctant to express concerns with capnography when issues arose. personal experience and knowledge about capnography performance value of capnography participants stressed the value of past experience with the use of capnography to their ability to properly understand how capnography works during sedation. participants linked past experience with capnography with the ease of use. joe stated: “when i first started to work here, i didn’t know much about capnography from my background”. martin added: “in my previous workplace, there was capnography as well in endoscopy, i used it for many years; capnography is basically simple to use”. one participant (mary), who was a nurse with the least experience with capnography among all participants (four years) said: “i am really comfortable with capnography practice here”. however, during observation, mary did not seem comfortable with capnography when encountering technical issues, and required assistance from a more experienced nurse. mary’s statement suggests comfort with the policy of using capnography (following the rules) but not necessarily with how to use capnography. sara, who was a more experienced nurse, generally seemed more comfortable with capnography than mary during observations. participants also shared their experiences and opinions about capnography function, interpretation, and alarms. we captured several differences in the level of knowledge among participants. anesthesia practitioners commonly believed having adequate knowledge and skills with the capnography monitoring was a core component for their professional identity. joe stated: “i believe it’s really important for anyone who works in anesthesia to have good knowledge and good skills with capnography because it’s […] common equipment in our everyday job; to read capnography”. alex, who was the most experienced participant, emphasized the value of capnography during sedation: “we don’t use capnography for the reading because it is constantly fluctuating, but rather we look for the waveform. the important thing is that we monitor that the patient is breathing despite the reading. we are monitoring that the patient has no upper airway obstruction and that the patient is ventilating well”. anesthesia practitioners relied on the capnography waveform to assess their patients: the presence of a waveform gave them a sense of reassurance that the airway was secured. unlike anesthesia practitioners, nurses placed little emphasis on the waveform and monitored the numerical reading of capnography. mary said: “the readings are very helpful to assess my patient. sometimes you can see the patient’s oxygen saturation is 100, but once you look at the patient, the patient is not really breathing! so we don’t only rely on the pulse oximetry alone, capnography helps you to be comfortable and sure that your patient is breathing nicely. at least you won’t panic if you can see [a] capnography reading while the patient is starting to desaturate”. while nurses acknowledged the reassurance capnography added to pulse oximetry and patient observation, and expressed confidence with their knowledge about capnography, they only used it as a secondary supportive monitor and relied mainly on patient observation and vital signs during observations to direct clinical judgement. sara stated: “capnography helps a lot to support patients’ vital signs”. capnography alarms participants highlighted the concern that many false alarms limited capnography value. participants exhibited different behaviors when responding to alarms during observation. anesthesia practitioners identified the source of alarms and relied on these alarms to initiate an appropriate intervention if needed. martin said: “sometimes the capnography gives false alarms. the patient is breathing but the capnography is showing a flat line. this is usually a technical error with the equipment and [there is] no need for any intervention”. joe further indicated that it is necessary to have adequate skills to differentiate clinically relevant alarms from false alarms. he said: “sometimes we get confused with the alarms, but if you’re able to interpret the capnography monitor to exclude artefacts, you should be fine”. [page 88] [qualitative research in medicine & healthcare 2020; 4:9077] article no nco mm er cia l u se on ly nurses considered capnography alarms as disturbing. sara said: “actually, capnography gives so many alarms. they are annoying because sometimes it’s not an accurate alarm; only because the patient is moving, or the procedure interferes sometimes”. during observations, anesthesia practitioners responded to capnography alarms first by looking closely at the patient and constantly at the capnography screen, and then intervened accordingly; while nurses relied greatly on patient observation to initiate an intervention and tended to ignore most of the alarms, considering them false. nurses highlighted the lack of clear policy for capnography alarm management. mary stated: “i believe that the thing that disturbs me the most, the only thing i encounter, is the sound of alarm! once the capnography is dropping, you know the sound of the alarm. and there is no clear policy, i think, to respond to capnography alarms”. mary’s statement is cause for concern, because it suggests that the sound of alarm disturbed mary rather than worrying about the cause of the alarm. her statement also reflected frustration with the lack of policy to differentiate true from false capnography alarms. facilitators and barriers to the utilization of capnography monitoring within this theme, participants shared their opinions of the factors that foster or discourage the adequate use of capnography. figure 1 demonstrates these factors, which are condensed into three major categories of sheckley et al.’s modified trio model for professional learning27 to successfully implement new technologies. environment participants perceived ensuring patient safety as a strong facilitator for the use of capnography during sedation. sara stated: “with capnography, i am more confident that the patient is breathing. i guess i can know my patient is safe”. alex further added that the fact that capnography is the standard of care promoted its use within the department. he said: “we are following standards; we are not inventing anything”. participants perceived the availability and access to capnography equipment as important promoters for its use. alex said that it was used: “…either through the anesthesia machine or in some areas where no anesthesia machines were available, we managed to have a portable capnography [instrument], and we have different versions of portable capnography [instrument], as well”. however, sara believed that the mere existence of the monitor was not sufficient for its utilization as long as it was associated with so many problems; she said: “sometimes we can’t use the machine, because there is some malfunction or need for recalibration”. participants also believed that working in a major hospital with critically ill patients promoted the use of capnography. alex stated: “here in this center, we have so many critical patients, and as a tertiary center, the majority of our patients and referral critical cases. we are dealing with very old, risky patients, and the procedures are long and complex. so, this makes us put efforts to make sure that the patient is safe and receives the best of care.” the cost burden of capnography represented a reasonable barrier to utilization. joe said: “not all hospitals have the resources to provide capnography”. however, martin stressed that capnography was cost-effective and should not be discouraged by cost, as he stated: “if we are preventing complications from happening so we are safe. we are cost effective for the hospital in terms of discharging patients, instead of getting complications and re-admitting patients and spending more resources”. experience participants believed that unfamiliarity with capnography monitoring equipment was a barrier to acceptance and adequate use by practitioners. joe stated: “lack of experience; make clinicians less confident around capnography. it distracts them from the patient because they do not understand how it works”. observations in the current study showed that practitioners with previous experience [qualitative research in medicine & healthcare 2020; 4:9077] [page 89] article figure 1. modified trio model for professional learning by sheckley et al. no nco mm er cia l u se on ly with capnography demonstrated a better pattern of utilization than those with fewer years of experience. knowledge and skills participants perceived knowledge and skills as important facilitators to adequate utilization. mary said: “the clinician who is administering sedation and the one who is involved in the procedure must have the knowledge about capnography to be able to use it”. during observations, anesthesia practitioners demonstrated superior capnography skills to sedation nurses. discussion within this study, we aimed to explore sedation practitioners’ perceptions and behavior towards capnography during endoscopy sedation and examine how capnography monitoring influenced clinical decision-making when assessing ventilation. we also examined factors facilitating and barring the use of capnography. our findings show that although participants perceived capnography as essential within the endoscopy unit and as part of hospital policy for sedation, the underlying beliefs which guided its utilization differed between anesthesia practitioners and nurses. the safety of any culture is characterized by effective preventive measures and by practitioners’ shared perceptions of the importance of safety.28 capnography improves patient safety during sedation while serving as an early indicator of respiratory depression, which usually proceeds hypoxemia.6,7 findings revealed a cultural difference between anesthesia practitioners and nurses in terms of how they monitored their sedated patients; while the former relied on technology, the latter relied on assessment with vital signs and patient observation. our findings show that anesthesia practitioners realized the value of capnography waveform to assess ventilation. notably, the capnography waveform allows visual breath-by-breath assessment of ventilation, which is known as superior to the numerical reading when assessing ventilation during sedation.6,7 anesthesia practitioners expressed a definite link between safety and the use of capnography, and thus, that its absence presented a potential risk to patients. however, nurses lacked the in-depth understanding of the value of capnography waveform during sedation. nurses perceived the traditional method of patient observation and assessment of vital signs to be the best way to ensure adequate ventilation and patient safety. clark et al.29 revealed similar findings: they stated that 77% of nurses believed that capnography compromised patient safety, as it would distract them from clinically monitoring their patients. we found that nurses, unlike anesthesia practitioners, were only accustomed to use capnography monitoring during sedation because the guidelines mandated its use in the department, and not because nurses valued the benefit of capnography when assessing ventilation. technology-based monitors such as capnography are only as good as the user interpreting the information they provide.30 in this context, adequate utilization of capnography relies on the practitioner’s knowledge and skills. in explaining the discrepancy between the two professional groups, it is important to consider the wide range of professional disciplines that work as teams in different departments and to understand the interaction between cultures that work together. each professional culture guides its individuals to a particular way of thinking and behavior.31 the literature suggests that professional groups perceive the patient safety culture within a single unit differently based on their profession’s differing values and norms.31,32 anesthesia practitioners and nurses have different learning environments, which could explain the diversity in their cultures. the environment of the operating theatre is associated with high risks and time pressure; anesthetists are trained to become leaders and take responsibility for decision making. in contrast, nurses are trained to work as part of a team rather than independent decision-makers.33 the values of each profession create a communication barrier with the other, as these values are unspoken and might be difficult to perceive by the other. anesthesia practitioners and nurses could look at the same thing, capnography, yet see different things, because they have different values related to patient safety.34 the patient safety culture within our study seems to fit into the hierarchy model of the four types of culture in cameron and quinn’s competing values framework,35 in which power, uniformity, policy, and formal rules drive individuals.36 the monitoring requirement for sedation within the hospital mandated the use of capnography. nurses perceived capnography as a supportive monitor for clinical assessment despite their positive opinions about it––their use of capnography was policyrather than value-driven. although the incorporation of capnography into clinical practice through hospital policy might increase patterns of use,30 it did not ensure adequate utilization by the nurses in our study. similarly, iyer et al.37 and langhan et al.38 noticed that protocol-driven practice did not ensure adequate utilization of monitoring and lead practitioners to varied practice. they also found that practitioners with previous experience used capnography more efficiently that those with limited experience.38 similarly, in our study, those who have had previous experience with capnography expressed a higher level of comfort while using it. anesthesia practitioners believed that patient safety during sedation was their professional obligation, which shows the autonomy of anesthesia practitioners within this setting.39 they established patient safety initiatives for the whole team and controlled the choice and involvement of sedation nurses. there is an ancient difference between [page 90] [qualitative research in medicine & healthcare 2020; 4:9077] article no nco mm er cia l u se on ly anesthetists and nurses, including authority and responsibilities—the issue of power among physicians and nurses is well-known in literature.39,40 anesthesia practitioners’ discretion to involve nurses in developing sedation policies initiatives reflects the prevailing professional culture, owing to the special authority of the anesthesia profession over nursing.39 while nurses recognized support from anesthesia practitioners in their use of capnography, an admission of to having insufficient knowledge or skills seemed to be in contrast with the privilege that anesthesia practitioners granted nurses to perform moderate sedation without supervision. nurses also expressed values that showed that they wanted to be responsible for patient safety. this responsibility was associated with anesthetists’ delegation to nurses within that particular setting. nurses maintained their values while monitoring sedated patients––with an emphasis on patient observation and assessment to make clinical decisions––which stems from the core value of their profession, such as human dignity and integrity.36 similarly, hall32 suggests that nurses respect and value the story of the patient and will not depend as heavily on objective data as physicians. nurses in our study did not share the same values as anesthesia practitioners regarding what constituted patient safety culture. it is important to consider that anesthesia practitioners have long experience with the use of capnography in the operating theatre,6 which explains their high levels of comfort with it, while nurses have only recently performed sedation within the institution as authorized by anesthetists. thus, these nurses had little experience with capnography monitoring prior to work as sedation nurses. langhan et al.11 reported that nurses with the least experience were more likely to perceive capnography as a sophisticated technology. according to benner,41 novice practitioners rely on rules to guide their judgement because they have no prior experience with the situation they encounter. capnography false-alarms were frequent during this study, occurring when patients were mouth-breathing, or when the sampling line was dislocated. false-alarms can mislead practitioners by showing a flat line (indicating an apnea) while the patient is demonstrating adequate chest rise and able to maintain proper oxygenation.7,9 a study by siebig et al.42 found that 40% of capnography alarms were false, and only 15% of all alarms were clinically important. nurses’ observed behavior in ignoring alarms suggests that they mainly trusted their own clinical assessment of the patient. however, the literature has identified this behavior as alarm fatigue (a tendency to ignore most alarms),43 and alarm fatigue leads clinicians to miss clinically important alarms in the future. sowan et al.44 showed that a lack of alarm management policy regarding response to capnography alarms adds complexity to the recognition of important alarms. the variation we observed in this study between anesthesia practitioners and nurses highlight challenges when adopting new technologies. nurses perceived a lack of familiarity with capnography to be a barrier for adequate use. barnett et al.8 surveyed nurses to assess their use of capnography during sedation and found that most nurses were neutral or unsure when asked to rate how useful capnography was to the provision of safe sedation, and also neutral/unsure about the ease of interpreting capnography data. langhan et al.11 revealed that only 20% of practitioners used capnography during sedation, and the reasons for not using it included lack of familiarity and lack of perceived need for its use.8 maddox and williams45 introduced capnography outside the operating theatre, and encountered similar challenges to those observed in this study, such as compliance with use and management of false alarms. these finding, combined with ours, provide insight into the importance of adequate training of practitioners on how to use and interpret capnography early in its implementation. levels of knowledge can be measured by the use of appropriate instruments to help identify knowledge gaps and the need for further education. kiekkas et al.30 developed a comprehensive instrument to evaluate nurses’ knowledge of capnography, which can increase nurses’ knowledge and comfort levels with this technology. our study has several limitations. notably, we conducted this study at a single endoscopy unit in a single hospital. the study participants have different levels of experience with capnography, and their behavior and perceptions of capnography might change after ongoing experience. we accept and acknowledge that our study sample is small and therefore is unlikely to represent the full spectrum, so the findings may not be transferable to other sedation practitioners. however, we managed this impact through triangulation of data collection methods to capture a wider perspective. we do not claim our findings to be generalizable to other communities,17 since the aim of focused ethnography is to understand, describe and interpret shared experiences and meanings within a particular cultural setting. conclusions although the literature has proven capnography monitoring to maintain patient safety by ensuring adequate ventilation during sedation,7-9 the practitioners’ experiences and perceptions who use capnography have not yet been addressed. within this focused ethnography, we explored the behavior and perceptions of five sedation practitioners (2 anesthetists, 1 anesthesia technician, and 2 nurses) regarding capnography monitoring during endoscopy sedation. our findings revealed varied behaviors and opinions about the value of capnography monitoring. while anesthesia practitioners relied heavily on capnography to assess ventilation, nurses paid more attention to patient [qualitative research in medicine & healthcare 2020; 4:9077] [page 91] article no nco mm er cia l u se on ly observation and assessment. there was a prevailing culture rather than a shared professional culture between anesthesia practitioners and nurses: anesthesia practitioners established the rules for safe sedation and monitoring requirements, and nurses were good team players who followed the rules. however, the unique cultures of each profession guided their perception of the value of capnography. our findings invite future research to explore––in more depth––what factors beyond professional identity, hospital rules and policy, and past experience are associated with the utilization of capnography during sedation. our findings also point to the complexity of capnography alarms and the need for research to determine an appropriate alarm management protocols to guide practitioners. anesthesia practitioners advocated the patient safety initiatives in the endoscopy settings. our findings give insight for future research to explore the notion of a cultural shift––to involve nurses in the implementation phase of capnography, and to establish shared values to what constitutes a patient safety culture. references 1. adams l, butas s, spurlock jr d. capnography (etco2), respiratory depression, and nursing interventions in moderately sedated adults undergoing transesophageal echocardiography (tee). j perianesth nurs 2015;30:14-22. 2. vaessen hh, knape jt. considerable variability of procedural sedation and analgesia practices for gastrointestinal endoscopic procedures in europe. clin endosc 2016;49:47-55. 3. joint commission. pain assessment and management standards for hospital: requirement, rationale, reference. a complimentary publication of the joint commission; 2017. available from: https://www.jointcommission.org/assets /1/18/r3_report_issue_11_pain_assessment_8_25_17_fi nal.pdf accessed: december 02, 2018. 4. european board of anesthesiology. recommendations for minimal monitoring during anesthesia and recovery; 2011. available from: http://www.eba-uems.eu/resources/pdfs/ safety-guidelines/eba-minimal-monitor.pdf accessed: april 20, 2018. 5. american society of anesthesiology. standards for basic anesthetic monitoring: american society of anesthesiologists; 2010. available from: https://www.asahq.org/standards-and-guidelines/standards-for-basic-anesthetic-monitor ing accessed: april 27, 2018. 6. kodali bs. capnography outside the operating rooms. anesthesiol 2013;118:192-201. 7. beitz a, riphaus a, meining a, et al. capnographic monitoring reduces the incidence of arterial oxygen desaturation and hypoxemia during propofol sedation for colonoscopy: a randomized, controlled study (colocap study). am j gastroenterol 2012;107:1205-12. 8. barnett s, hung a, tsao r, et al. capnographic monitoring of moderate sedation during low-risk screening colonoscopy does not improve safety or patient satisfaction: a prospective cohort study. am j gastroenterol 2016;111:388-94. 9. klare p, reiter j, meining a, et al. capnographic monitoring of midazolam and propofol sedation during ercp: a randomized controlled study (endobreath study). endoscopy 2016;48:42-50. 10. egan e. introducing capnography monitoring into an endoscopy service. gastroenterol nurs 2016;14:37-43. 11. langhan ml, kurtz jc, schaeffer p, et al. experiences with capnography in acute care settings: a mixed-methods analysis of clinical staff. j crit care 2014;29:1035-40. 12. brewer j. ethnography. philadelphia, pa: open university press; 2000. 13. richards l, morse jm. readme first for a user’s guide to qualitative methods. 3rd ed. thousand oaks, ca: sage; 2013. 14. roper jm, shapira j. ethnography in nursing research. thousand oaks, ca: sage; 2000. 15. patton mq. qualitative research & evaluation methods: integrating theory and practice. 4th edition. london: sage; 2015. 16. cooper j, lewis r, urquhart c. using participant or nonparticipant observation to explain information behavior. inf res 2004;9:9-4. 17. fetterman dm. ethnography: step-by-step. 3rd ed. london: sage publications; 2009. 18. bryman a. social research methods. 5th ed. oxford: oxford university press; 2015. 19. creswell jw, creswell jd. research design: qualitative, quantitative, and mixed methods approaches. 5th ed. thousand oaks, ca: sage; 2018. 20. renz sm, carrington jm, badger ta. two strategies for qualitative content analysis: an intramethod approach to triangulation. qual health res 2018;28:824-31. 21. cardiff university. research integrity and governance code of practice.; 2019. available from: https://www.cardiff.ac.uk /__data/assets/pdf_file/0004/937021/research-integrityand-governance-code-of-practice-v3-pdf.pdf accessed: december 15, 2018. 22. data protection act 1998, c. 29. b. available from: http:// www.legislation.gov.uk/ukpga/1998/29/pdfs/ukpga_199800 29_en.pdf accessed: december 20, 2018. 23. ryan gw, bernard hr. techniques to identify themes. field methods 2003;15:85-109. 24. kvale s, brinkmann s. interviews: learning the craft of qualitative research interviewing. 3rd ed. los angeles: sage publications; 2015. 25. carcary m. the research audit trial—enhancing trustworthiness in qualitative inquiry. j bus res 2009;1:7. 26. tattersall a. who, what, where, when, why: using the 5 ws to communicate your research. impact of social sciences blog 2015. available from: http://eprints.lse.ac.uk/ 70619/1/blogs.lse.ac.uk-who%20what%20where%20 when%20why%20using%20the%205%20ws%20to%20c ommunicate%20your%20research.pdf accessed: jan 15, 2019 27. sheckley b, kehrhahn m, bell s, grenier r. trio: an emerging model of adult professional learning. inproceedings of the 49th annual adult education research conference 2008, university of missouri, st. louis. available from: https://newprairiepress.org/aerc/2008/roundtables/12/ accessed: feb 02, 2019 28. feng x, bobay k, weiss m. patient safety culture in nursing: a dimensional concept analysis. j adv nurs 2008;63: 310-19. 29. clark cl, weavind lm, nelson se, et al. nursing attitudes [page 92] [qualitative research in medicine & healthcare 2020; 4:9077] article no nco mm er cia l u se on ly towards continuous capnographic monitoring of floor patients. bmj open qual 2018;7:e000416. 30. kiekkas p, stefanopoulos n, konstantinou e, et al. development and psychometric evaluation of an instrument for the assessment of nurses’ knowledge on capnography. collegian 2016;23:39-46. 31. danielsson m, nilsen p, rutberg h, carlfjord s. the professional culture among physicians in sweden: potential implications for patient safety. bmc health serv res 2018;18:543. 32. hall p. interprofessional teamwork: professional cultures as barriers. j interprof care 2005;19:188-96. 33. reese dj, sontag ma. successful interprofessional collaboration on the hospice team. health soc work 2001;26:16775. 34. petrie hg. do you see what i see? the epistemology of interdisciplinary inquiry. educ res 1976;5:9-15. 35. cameron ks, quinn re. diagnosing and changing organizational culture: based on the competing values framework. 3rd ed. san francisco, ca: john wiley & sons; 2011. 36. jun j, kovner ct, dickson vv, et al. does unit culture matter? the association between unit culture and the use of evidence-based practice among hospital nurses. appl nurs res 2020;53:151251. 37. iyer ns, koziel jr, langhan ml. a qualitative evaluation of capnography use in paediatric sedation: perceptions, practice and barriers j clin nurs 2015;24:2231-8. 38. langhan ml, shabanova v, li fy, et al. a randomized controlled trial of capnography during sedation in a pediatric emergency setting. am j emerg med 2015;33:25-30. 39. makary ma, sexton jb, freischlag ja, et al. operating room teamwork among physicians and nurses: teamwork in the eye of the beholder. j am coll surg 2006;202:746-52. 40. braaf s, manias e, finch s, et al. healthcare service provider perceptions of organisational communication across the perioperative pathway: a questionnaire survey. j clin nurs 2013;22:180-91. 41. benner p. from novice to expert. am j nurs 1982;82:402-7. 42. siebig s, kuhls s, imhoff m, et al. intensive care unit alarms— how many do we need?. j crit care med 2010;38: 451-56. 43. applegate rl 2nd, lenart j, malkin m, et al. advanced monitoring is associated with fewer alarm events during planned moderate procedure-related sedation: a 2-part pilot trial. anesth analg 2016;122:1070-78. 44. sowan ak, tarriela af, gomez tm, et al. nurses’ perceptions and practices toward clinical alarms in a transplant cardiac intensive care unit: exploring key issues leading to alarm fatigue. jmir hum factors 2015;2:e3. 45. maddox rr, williams ck, fields m. respiratory monitoring in patient-controlled analgesia. am j health sys pharm 2004;61:2628-35. [qualitative research in medicine & healthcare 2020; 4:9077] [page 93] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2019; 3:8536] [page iii] in his examination of territories of knowledge, or how knowledge is differently distributed among social members, john heritage remarks that the relationship between knowing something and having experienced it is deeply entrenched in interactional practices between knowing and evaluation.1 what this means is that epistemic access, or the rights to own one’s own experiences in terms of knowledge – as for example, the experience of illness, or aging, or interaction with healthcare professionals as a patient or researcher – is never equal to that of others. though firsthand experience of illness should correspond to its knowledge that is not always the case when experts enter the picture. when people who are ill enter medical treatment, as an example, their accounts will be transformed in terms of symptoms, diagnoses and prognoses, and therefore all health-care (as one among several helping relationships) is based on a functional asymmetry of knowledge between patients and third person knowers. within the scope of any interactional asymmetry, the act of asking a question is at the heart of accessing another’s experience. i consider the question as the most important interactional move in qualitative research, for it presumes that researchers do not already know the experiences of those they study, but rather grant them primacy to their own firsthand knowledge. as well, the questions researchers pose – at step of the research study – should be open to surprising responses and conclusions that were not part of previous knowledge and always open to further questions down the line. the five articles in this issue are not only deeply entrenched in interactional practices,1 but part of a metaconversation about qualitative research and entitlement to experience.2 in the lead article of this issue of qrmh, the role of standardized patient assessment forms in medical communication skills education, peters studies how communicative exchanges are subsumed in rubrics of medical knowledge.3 her examination of how a computerized form establishes the rights and obligations of communicators in healthcare settings illustrates how the very experience of communication is transformed by the technological apparatus designed to evaluate it: be it questioning protocols, charts, or devices. peters’ analysis illustrates that patient experience is actually expertgenerated, and ultimately for the purposes of expert knowledge and access, though it reformulates the experience of communication for all parties involved, and the knowledge of what counts as communication in medical practice as a whole. in the study advantages and challenges of using mobile ethnography in a hospital case study: whatsapp as a method to identify perceptions and practices, bjørner and schrøder are also concerned with capturing communication as experiential praxis.4 by taking a phenomenological approach, the authors introduce whatsapp as a multimodal technology that nurses can use to track and reflect on their everyday interaction with doctors and patients, allowing a record of knowledge to be generated from the nurses’ point of view. by way of this record, the researchers realize that nurses’ knowledge is not valued in the same way as that of physicians, though it is nurses, and not physicians, who experience the day to day care of patients firsthand. the three articles by blix and hamran,5 anderson,6 and bell et al.7 further expand on heritage’s discussion of territories of knowledge and territories of experience by delving into the asymmetries of what different parties in our society can accountably know, how they know it, whether they have the rights to describe it and in what terms.8 by troubling the very ideal of universalism on which the norwegian social welfare system is built, blix and hamran’s fascinating study assisted living in rural editor’s introduction: qualitative research and the epistemics of experience mariaelena bartesaghi department of communication, university of south florida, tampa, fl, usa correspondence: mariaelena bartesaghi, department of communication, university of south florida, cis 1040, 4202 e. fowler ave, tampa, 33620 fl, usa. tel.: +1.813.974.2145 fax: +1.813.974.6817. e-mail: mbartesaghi@usf.edu received for publication: 4 september 2019. accepted for publication: 5 september 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:iii-iv doi:10.4081/qrmh.2019.8536 qualitative research in medicine & healthcare 2019; volume 3:iii-iv no nco mm er cia l u se on ly areas: aging in blurred landscapes explores the experiences and practices of aging for elderly adults in assisted living facilities. by examining the dilemmas of equity – the tensions between ideals and practices – what the authors are in fact doing is to question whose experience of equity comes to represent its institutional accounts, and, if it does not include what the residents of the facilities can accountably know, whether it should be understood as equity in the first place.5 similarly, anderson’s analysis of how participants in facebook peer-to-peer support groups for metastatic cancer make sense of their own illness, points to the link between authorship and authorship and authority9 or being able to account for one’s own embodied experience in terms of knowledge. in it doesn’t make sense, but we do: framing disease in an online metastatic breast cancer support communityanderson’s examination of facebook threads between support group members demonstrates that when medical experts are out of the picture, women can occupy online spaces by resisting the medical metaphors of war and their entailments of winners and losers in the battle against cancer, thus allowing for the emergence of different identities, and the communicative creation of different bodies altogether.6 the closing article by bell et al.7 reminds me of this remark about psychiatry by the late thomas szasz: psychiatrists, he noted, are not concerned with mental illnesses and their treatments. in actual practice they deal with personal, social, and ethical problems in living.10 in there’s just huge anxiety: ontological security, moral panic, and the decline in young people’s mental health and well-being in the uk, the authors rejoin a mounting critique of the biochemical model of mental illness as a disease of the mind or brain and locate it instead as a response to a collapse of ontological security, or what young people in the uk need to feel safe. by adapting beck’s concept of the risk society11 to manifestations of mental illness, such as worry, anxiety, depression, and panic, bell et al. argue that mental illness, like beck’s construct of risk, is the product of the very social and political arrangements that are in place to address it, and, in particular, the account of it as an illness of the individual, rather than a social experience. in their five analyses of how experience can be accountably known, the authors of this issue make a powerful case for how qualitative research is always asking questions that are critical to social and political action, and creates the opening for alternative ways of accounting and knowing. references 1. heritage j. territories of knowledge, territories of experience: emphatic moments in interaction. in: stivvers t, mondada l, steensig j, eds. the morality of knowledge in conversation. cambridge: cambridge university press; 2011. pp 159-183. 2. sacks h. lectures on conversation, i and ii. new york: wiley & sons; 1992. 3. peters g. the role of standardized patient assessment forms in medical communication skills education. qualit res med healthc 2019;3:8213. 4. bjørner t, schrøder m. advantages and challenges of using mobile ethnography in a hospital case study: whatsapp as a method to identify perceptions and practices. qualit res med healthc 2019;3:7795. 5. blix bh, hamran t. assisted living in rural areas: aging in blurred landscapes. qualit res med healthc 2019;3:7826. 6. anderson ab. it doesn’t make sense, but we do: framing disease in an online metastatic breast cancer support community. qualit res med healthc 2019;3:7007. 7. bell j, reid m, dyson j, et al. there’s just huge anxiety: ontological security, moral panic, and the decline in young people’s mental health and well-being in the uk.qualit res med healthc 2019;3:8200. 8. heritage j. epistemics in action: action formation and territories of knowledge. res lang soc interac 2012;45:1-29. 9. cooren f. action and agency in dialogue: passion, incarnation, and ventriloquism. philadelphia: john benjamins; 2010. 10. aftab a. mental illness vs brain disorders: from szasz to dsm-5. psychiatric times 2014;31. available from: https://www.psychiatrictimes.com/dsm-5/mental-illness-vsbrain-disorders-szasz-dsm-5. accessed: august 2019. 11. beck u. the risk society: towards a new modernity. london: sage publications; 1992. [page iv] [qualitative research in medicine & healthcare 2019; 3:8536] editorial no nco mm er cia l u se on ly layout 1 introduction the complex processes involved in the organization and delivery of health care have been the focus of research for decades. while quantitative data remains central in healthcare research, qualitative methods are increasingly used to better understand complex healthcare issues. data collected through semi-structured interviews and focus groups are now commonly found in the healthcare literature, including studies of provider behavior1,2 and patient experience.3,4 qualitative observation is a means of data collection comprised of viewing and documenting what people do in their environment with the goal of understanding behavior in context.5-7 the purpose of this paper is to encourage health services and other researchers to consider how observation can add to their study and demonstrate how to prepare for and conduct observation as part of a health services research study. we begin by providing a general introduction to observation and why to use it as a research method. then, we present our pragmatic apusing observation to better understand the healthcare context lauren e. weston,1 sarah l. krein,1,2 molly harrod1 1va center for clinical management research, va ann arbor healthcare system, ann arbor, mi; 2department of internal medicine, university of michigan, ann arbor, mi, usa abstract despite potential to capture rich contextual information, observation remains an underutilized data collection method. this paper provides a practical guide for using observation to understand complex issues in healthcare settings. observation is a qualitative data collection method comprised of viewing and documenting phenomena in the usual environment. drawing on our recent work using observation to better understand personal protective equipment use among healthcare personnel, we describe when to consider collecting data via observation, how to prepare and perform observation, and how to analyze resulting data. observation data are documented in field notes that contain detailed information about setting, participants, and activity associated with the topic of interest. field notes can be analyzed alone or triangulated with other types of data using theoretical or conceptual frameworks or by identifying themes. observation is a valuable data collection method for health services researchers to identify key components involved in a topic of interest, a vital step in forming relevant questions, measuring appropriate variables, and designing effective interventions. used with other methods or alone, observation yields the detailed data needed to address context-specific factors across a wide range of healthcare research topics and settings. correspondence: lauren e. weston, va ann arbor center for clinical management research, 2800 plymouth road, ncrc b16, 016-300s-03, ann arbor, mi 48109, usa. tel.: 734-845-3618; fax: 734-845-3250. e-mail: lauren.weston@va.gov key words: qualitative methods; observation; health services research. acknowledgements: we would like to acknowledge the invaluable data collection assistance from the research project staff maria hughes, pt, and pia roman, ma, va center for clinical management research, va ann arbor healthcare system, as well as stefanie yuen, mph, and keven mosley-koehler, ms, mph, university of michigan.we also acknowledge the work of the following research assistants from the university of michigan: olivia gignilliat, bs, emily dawson, ba, alison rossini, gloria kim, and michael ryan. these individuals received compensation for their contribution. we also thank the many healthcare personnel and patients for their willingness to be observed. contributions: lew was the primary writer of the manuscript with content and writing input from slk and mh. slk and mh were critical in the design of manuscript development. all authors read and approved the final manuscript. conflict of interests: the authors have no conflict of interest to declare. funding: this work was supported by funding from the centers for disease control and prevention, prime contract no. 200201142039, task order 0007; centers for disease control and prevention, 1 u54 ck000456-01; and supported by the va health services research & development service (rcs 11-222 for slk). the funding source played no role in study design, data acquisition, analysis or decision to report these data. the views expressed in this article are those of the authors and do not necessarily reflect the position or policy of the department of veterans affairs or the u.s. federal government. availability of data and materials: the data presented in this study are anonymized and were collected under the auspices of confidentiality and therefore, are not available to the public. ethics approval and consent to participate: the ethics committees of the university of michigan healthcare system and the ann arbor va healthcare system approved this study (hum00112340; irb-2016-339). the study is conformed with the helsinki declaration of 1964, as revised in 2013, concerning human and animal rights. all participants in this study provided verbal informed consent for participating in this study, as deemed appropriate for the minimal risk study by the overseeing institutional review boards. informed consent: participating hospital institutional review boards deemed this research minimal risk and therefore, required verbal consent be obtained from the particpants. verbal informed consent was obtained for study participation and for anonymized study data to be published. received for publication: 20 april 2021. revision received: 11 january 2022. accepted for publication: 11 january 2022. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2021 licensee pagepress, italy qualitative research in medicine & healthcare 2021; 5:9821 doi:10.4081/qrmh.2021.9821 [page 104] [qualitative research in medicine & healthcare 2021; 5:9821] qualitative research in medicine & healthcare 2021; volume 5:9821 no nco mm er cia l u se on ly proach to developing an observation protocol, training observers, and employing a systematic process for using observation in a healthcare setting using our own study in which non-participant observation was used to better understand and characterize the circumstances surrounding personal protective equipment (ppe) (i.e., gowns, gloves, masks, and eye protection) use by health care personnel (hcp) in the hospital environment. while the precise content of observation training may vary based on research topic, question, and goal, we also present the training that we provided to our research staff as an in-depth example and practical guide on how to train observers—an area of the literature where a gap is noted. why use observation as a research method historically, observation has been used by anthropologists seeking to understand particular social phenomena through enthnographic research.8 the range of factors (e.g., personal, environmental, temporal, and organizational) that can be captured by observing a phenomenon as it is performed in context provides rich, empirical knowledge and results in detailed data about the topic or activity of interest.9 moreover, usual behavior performed in the usual environment by the usual participants contains invaluable contextual information that may not be identified in a simulated scenario10 or may contain nuance not captured using other methods such as interviews. often, people perform tasks and activities that are so routine and habitual that they do not recall their specific actions. the highly detailed information garnered through observation can be used to achieve important health services research goals by identifying exemplary practices, intervention points, and process improvement opportunities.11 observation should be considered when the research question involves developing a detailed understanding of an event, activity, process, or outcome of interest. specifically, observation should be considered when establishing a descriptive account (e.g., step-by-step description), identifying factors that may affect its performance or outcome, or characterizing the surrounding patterns of behavior (e.g., common or divergent practices). in addition to capturing what comprises, affects, and produces the activity, process, or outcome of interest, observation can be used to characterize how and how often it occurs. for example, healthcare organizations often structure work through protocols. however, most protocols are not flexible or nuanced enough to fully reflect all of the factors hcp must consider when performing tasks. observation allows a better understanding of how work is actually performed. further, observation can be used to explore how tacit and explicit knowledge influence hcp behaviors while performing their work. for instance, hcp may engage in behavior they tacitly know will get the work done, but at the same time explicitly know that they are not following protocol. while observation alone may not provide a full understanding of a behavior, it allows these sorts of behavioral patterns to be uncovered along with the circumstances or context in which they may occur. observation is the ideal tool to capture detailed, context-rich information that is difficult to discern through other methods. with some consideration of appropriate use for the research question and analysis goals, observation data can be used in various ways and throughout a study. it can be used in the beginning to familiarize researchers with the environment/context and build rapport with potential participants. observation is a powerful formative research tool not only early on, but throughout a study, as important physical, organizational, and interpersonal factors may be identified during these early observations that produce and situate findings, lead to modifications of study aims, or are used in the development of other data collection tools, such as interview guides or surveys. using observation to inform interview guides and surveys allows researchers to ask more specific and context-relevant questions. observation data can also be used throughout a study to describe processes, experiences, and areas for intervention, as well as to improve practice, further organizational goals, and develop context-specific interventions. one way observation data can be used to improve practice is to report findings to the participating groups. depending on the needs of the group, findings can be delivered in different ways, including written reports and summaries, meetings with key staff, and formal presentations. observational data can be analyzed to develop findings related to the research aims. it can also be analyzed in conjunction with other types of data, including data collected through other observational methods (e.g., shadowing), self-report methods (e.g., interviews and focus groups), or more structured methods (e.g., surveys). triangulation through multiple methods can be essential to understanding participants’ views and experiences within specific settings. how to use observation from start to finish once the decision has been made to use observation, a number of additional decisions then need to be made to determine specifically how observation will be used to achieve the goal of the research. in this section, we discuss these considerations, including observer type and role, data collection tools and approaches, observer training and data collection, and data analysis. our study: observing ppe use among hcp to provide a practical example, we present our experience using observation in a study designed to better understand the circumstances surrounding ppe use by hcp in the hospital setting.12 the objective of our study was to better understand how hcp used ppe while caring for patients in the hospital setting and what factors influ [qualitative research in medicine & healthcare 2021; 5:9821] [page 105] article no nco mm er cia l u se on ly enced their behavior and decision-making. our study took place at two acute care hospitals with non-participant observation conducted on medical/surgical wards, intensive care units, and an emergency department. the goal of observation was to characterize the contextual and behavioral factors that affect ppe use among hcp while caring for patients under contact and droplet precautions. the observation methods we describe apply specifically to our research aims, however, would be applicable in most healthcare settings and can be modified and used as a guide for other research projects. observer type and role: participant and non-participant observation observers will interact with participants and the environment to some extent by their presence; however, researchers will need to decide between participant observation and non-participant observation.13-15 participant observers engage directly in the activity of interest.16-18 this approach should be considered when the goal of the research involves performing a task or activity in order to understand insider experience of an event, activity, or process.19 for example, in the context of our ppe study, a participant observer would have directly engaged in patient care by performing activities such as patient repositioning, taking vital signs, delivering medications, and documenting not only what they observed around them, but also their experience of donning/doffing and providing care while wearing ppe. because covert methods may be needed to gain access to insider information, there are major ethical considerations involved in participant observation.19 in particular, if research personnel conceal their identity and the fact that they are conducting research in order to gather insider information, they have failed to obtain informed consent, therefore, violating medical research ethics. in addition to ethical considerations, participating in the activity of interest also presents a pragmatic data collection challenge in which the participant observer cannot fully participate and record observation data simultaneously. the resulting data are highly dependent on memory, as documentation must be completed at a later time. for a portion of our observations, research staff donned ppe and entered patient rooms with hcp. many observers noted partial or total distraction from observing, inability to document in real time while donning/doffing, and confusion about how to use ppe despite training. these challenges to observation would be exponential during the performance of patient care activities. in the context of health services research, advanced training and clinical knowledge may be required to engage in participant observation. while exisiting knowledge can be useful to inform data through an expert lens, paradoxically, substantial familiarity may result in compromised data if details perceived as standard practice are omitted.16,20,21 further, while content expertise and direct engagement in the activity of interest allow the participant observer to interpret events or explain the motivation behind behavior, it may also interfere with the collection of impartial or non-confirming descriptive data. considering the potential effects of their involvement in participant data collection, content experts can be instrumental in other parts of the study, including research question development, study planning, observer training, and data analysis and interpretation. in contrast, non-participant observers accompany natural participants as they perform the activity of interest without engaging in the activity themselves.7,13,22 the non-participant observer’s singular role is to collect research data by documenting what they see and hear as the natural participants (e.g., hcp) perform the activity of interest in the natural environment.6,15 without direct performance of the activity or process of interest, the non-participant observer cannot provide a first-person description or insider experience, but can instead capture the all-seeing, fly-on-the-wall perspective. non-participant observation should be considered when the goal of the research involves establishing a thorough understanding of an event, activity, process, or outcome, including how and under what circumstances it happens, who is involved, and what factors are at play as it occurs in the natural setting.15 non-participant observation can be conducted following targeted training in the method, as described in this manuscript, and therefore, advanced training or expertise in the topic area is not necessarily required. as such, researchers may consider candidates with limited experience (e.g., students and junior research staff), potentially increasing the number of observers a research budget is able to accommodate. more important than budgetary prudence is the quality of the data collected by trained non-participant observers without content or context expertise. in keeping with the paradox that close familiarity may diminish data quality—as with expert participant observation—the eye of an outsider may be valuable in capturing meaningful detail noticed in the unfamiliar. for instance, a clinician may observe hcp as they perform a series of tasks and recognize that patient vitals are being taken. while the clinician’s interpretation is correct, a possible consequence of familiarity is that valuable description of the activity may be reduced, overlooked, or excluded. it would be inaccurate to suggest that a clinician could not document the details of familiar activity; however, they may be more apt to overlook the details that are familiar and known to them. a non-clinician observer who is unfamiliar with the task may be more likely to notice and document nuanced details that otherwise are considered “standard” by someone who is familiar with the process being observed. the excerpt below shows a non-clinician, non-participant observer’s description as a medical assistant moves around a patient room taking their vitals: [page 106] [qualitative research in medicine & healthcare 2021; 5:9821] article no nco mm er cia l u se on ly medical assistant (ma) takes temperature: takes portable thermometer unit from the wall, inserts in box of probe covers, hands end to patient who places in mouth. ma holds thermometer unit until beeps, takes end piece from patient, ejects end piece cover into trash behind chair, replaces probe into unit, puts thermometer unit back on wall behind the bed. ma then checks bp: takes cuff out of wall basket, picks up patient arm and wraps cuff around it, rests patient arm on chair arm, then hits the button on the monitor. ma takes cuff off patient, returns to wall basket. ma then attaches the pulse ox to patient’s finger to check pulse and touches patient hand with both hands to adjust position. after each vital sign, ma reports to rn1 who records using the computer that is at the end of the room. (enteric site 2 unit a inside [date] room 1 [observer initials]) with a great deal of description, the non-clinician, non-participant observer provides a vivid and specific narrative of hcp interaction with both the patient and the patient environment. we can determine what equipment was used and where it came from, which surfaces were touched, and the order of task sequence. through this level of detailed data, we can better understand what we’ve observed through later interpretation during analysis. the detailed description allows us to recognize when protocols and guidelines are followed, identify any potentially important deviations from recommended practice, and determine problems or issues that participants experience with the observed process. in contrast, had interpretations been documented instead of the details (e.g., takes patient’s temperature, takes patient’s blood pressure), we lose our clear, turn-by-turn description of the ma’s work in the context of the patient room as it was done. further, important details that can be used to better understand process issues and potential solutions may be lost to summary or interpretation, rendering data useless in problem identification and solving. as such, the expected level of description for data collection should be made clear to observers during training, and, therefore, does not preclude content experts as observers. indeed, depending on the research question, a content expert may be needed to provide the necessary degree of technical information about the focus of the observation. nonetheless, in many situations, highly detailed data collection can be achieved by those without content expertise with less risk of inadvertent loss of description due to familiarity. our point is that while participant observation can be effectively used to better understand insider experiences, non-participant observation may be better suited to health services research, given the capacity to capture a holistic account of the complex issues in equally complex environments. thus, to develop an understanding of ppe use among hcp during patient care within the usual physical and organizational context – a complex issue with many contributing factors – we selected non-participant observation for our study. data collection tools and approaches: structured, unstructured, or semi-structured field notes in addition to the role of the observer, the research goal should also be used to determine whether data collection will be structured, unstructured, or semi-structured.13-15 while classically presented as a dichotomy in name, a continuum exists between unstructured and structured data collection.15,23 on one end of the continuum, unstructured data collection is used to establish the “how” or “what” of the topic using field notes to broadly record details and description of the larger context. structured data collection, however, often focuses on “if” or “how often” an activity or behavior occurs, which can be done using a checklist or template and result in quantitative data.6,8,23-25 between these two approaches exists what may be more appropriately called “semi-structured data collection,” in which elements of both unstructured and structured methods are present. a semi-structured approach can be used to capture information that is descriptively independent (e.g., precaution status of patient or unit type), but may influence the phenomenon of interest (e.g., use or non-use of ppe). to demonstrate the differences, a structured data collection tool such as a checklist would be used to document when hcp donned gloves before entering patient room, while fully unstructured field notes would be used to document the details of hcp activity as they provide patient care. but, as we did in our study, semi-structured field notes would contain both a structured section for precaution status of patient and unit type as well as unstructured detailed narratives of hcp activity surrounding ppe behavior. by selecting this combination approach from early stages of our study, we were able to maintain a highly organized dataset, the benefits of which were felt during analyses of observation data both alone and together with focus group data. choosing the appropriate documentation method is dependent upon the research question and the information needed to fully understand the phenomenon under study. observer training and data collection after observer type and data collection approaches are selected, it is vitally important that observers are trained on the data collection method, the study, and how the data will be used to address the research question before entering the field. training is paramount to ensure consistency in data collection and the performance of observation and ideally includes both didactic instruction and experiential training in the setting where the observation will be conducted (i.e., in the field). in planning our study, senior research team members performed several [qualitative research in medicine & healthcare 2021; 5:9821] [page 107] article no nco mm er cia l u se on ly preliminary observations to get an idea of what should be documented to meet our research goals. we then developed a training plan based on our experience conducting these early observations. we began with didactic training to introduce the research assistants (nursing and pre-med university students and professional research staff) to our study and to observation as a research method. research assistants entered the field with members of the study team for experiential observation training on the hospital units where they gained experience interacting with participants and collecting data. lastly, observers worked together and with members of the study team to finalize field notes and hone observation skills. observer training remained ongoing throughout our study. didactic training our initial training session began with a presentation by the principal investigator on the purpose, background, and specific aims of the study. next, our qualitative methodologist—a medical anthropologist—introduced observation as a research method, including what observation is, why it is used, by whom it is used and under what circumstances as described in this paper. once the method and study fundamentals had been introduced, training proceeded with more specific instruction on how to conduct observation for the purposes of our study, including what to observe and how to document the data. observers also received training on what to do in the field, including how to explain the study to participants, obtain informed consent, and identify rooms for observation. a field note guide outlining these data collection requirements was developed and distributed to research assistants at the time of training (see appendix). next, our training focused on documentation of observation data, which is done during observation by taking handwritten notes that are later typed to produce finalized electronic field notes. examples of de-identified handwritten notes from past observation work were presented to show the data in this primary stage. we then outlined the basic information that should be gathered for each observation in the structured data collection portion of the semi-structured field note. the content of this information header will vary by study, but typically includes date, time, observer, and location. we planned to look at our resulting observation data by unit type (e.g., medical and surgical, intensive care, and emergency), observer position (e.g., inside or outside room), and isolation precaution type (e.g., contact, enteric, or droplet), so these additional location descriptors were included in our header (figure 1). following the header, observers were asked to include a brief description of the physical environment. observers were asked to note signs posted, presence of supplies, trash containers, other furniture, and medical equipment. in addition to what was present, we also asked that observers note the state of the area and whether things were missing that should be there: general overview: the room is located at the end of the hallway. contact precaution (green) sign posted on open door. this room is next to another contact (green) isolation room. the cart is located in the hallway between the two rooms. cart appears to be well organized with two blood pressure cuffs, two boxes of gloves, and [an alcohol-based hand rub] bottle on top. drawers are closed. there is also a [germicidal wipe] (purple) tub hanging between the two rooms. it has no lid. there is an empty, medium, plastic-lined open trash container between the cart and the wall. (contact site 2 unit b outside [date] room 1 [observer initials]) in addition to training observers on what basic information should be included in field notes, it is also important to specify the parameters of data collection, including what should not be documented. in accordance with our study protocol approved by the institutional review boards (irbs) at our two data collection sites (hum00112340; irb-2016-339), personally identifiable information (pii) and protected health information (phi) were not to be collected during observation. patient names, room numbers, and phi were not to be noted in any study documentation, including field notes. collection of pii was also restricted for hcp. instead of using names, observers were asked to refer to all participants by role (e.g., patient, registered nurse [rn], medical doctor [md], physical therapist [pt]) or “unknown” if their role was not apparent. to distinguish between individuals when more than one participant of the same role was present, we asked observers to assign one-time numbers to multiples (e.g., rn1, rn2, rn3). examples were presented during training to show observers how field notes should look without pii or phi. “the patient begins talking to rn1 as he is looking at the screen and typing.” (contact site 2 unit b outside [date] room 2 [observer initials]) [page 108] [qualitative research in medicine & healthcare 2021; 5:9821] article figure 1. descriptive field note header. no nco mm er cia l u se on ly following the basics of documentation, training should focus on the main area of interest to be captured through observation. given that the goal of observation in our study was to better understand the contextual and behavioral factors that affect ppe use among hcp while caring for patients under contact and droplet precautions, observers were asked to notice and document the details of hcp behavior from the time the hcp approached a precaution room through the time they left. all patient care activities performed by hcp both inside and outside the patient room were observed and recorded in detail. specifically, observation field notes included who was present, performance of hand hygiene, if and how ppe was put on and removed (i.e., donned and doffed), care tasks performed, surfaces touched, equipment used and transported, interactions between hcp, and possible contamination points when unprotected contact occurred between the hcp and patient or patient environment. after establishing the focus of observation, it is important to establish the level of detail observers are expected to document to meet research goals. while some studies may need only a high-level account, other studies may require painstaking detail for analysis that could not be achieved with a list of activities. we indicated to observers that a great deal of detail was needed for our study in order to perform our planned analysis. to demonstrate the level of detail needed, we presented field note excerpts with rich detail from preliminary observations collected by senior research team members. it may also be useful for observers to see examples of field notes that do not include sufficient detail. below, we present two different ways the same observed activity can be documented. example 1 demonstrates sufficient detail, and example 2 demonstrates insufficient detail: example 1: md1 pulls gown forward from the front, breaking the shoulder seals. md1 then pulls the gown at the waist to break the tie. while md1 uses the gown to remove her gloves; her hands touch outside portions of the gown. as md1 crumples the gown, part of a tie falls onto the ground. md1 puts gown in trash then walks outside, stopping briefly in doorway to speak to rn1. md1 runs hands through hair then sanitizes hands with [alcohol-based hand rub]. md1 walks away. (contact site 2 unit e inside [date] room 1 [observer initials]) example 2: md1 removes ppe and performs hand hygiene. example 1 provides a detailed narrative of this physician’s ppe removal method, room exit, and performance of hand hygiene. in contrast, example 2 indicates that two tasks were performed: ppe removal and hand hygiene. the detailed description in example 1 captures the physician’s movements as she leaves the room, an interaction with a nurse, and two potential self-contamination opportunities: one while doffing gloves with gown and one by touching hair before performing hand hygiene. example 2 did not provide sufficient detail to meet our project goals as no additional information was available for further interpretation. experiential training as was the case for our study, it may be necessary to provide contentor context-specific training to observers in advance of data collection. because some observation for our study would require observers to enter precaution rooms with hcp, didactic training concluded and experiential training began with basic practical instruction from site infection prevention and control liaisons on when and how to appropriately use ppe. after didactic training, study team members accompanied observers on their first few field visits, providing guidance on how to explain the study to hcp, identify appropriate rooms to observe, and obtain verbal consent from hcp and patients. observers began by working in pairs to develop data collection skills before proceeding with individual observation. each observer was provided with a plastic storage clipboard with attached digital clock (used to include intermittent time stamps), paper, and several pens. because observers entered some precaution rooms with hcp, we also provided disposable plastic bags for covering clipboards. an on-the-unit protocol sheet was created, which included a list of study units, staff meeting times, how to determine the assigned nurse for precaution rooms, reminders and tips for checking in and interacting with unit staff, a list of ppe resources, and instructions for properly cleaning documentation supplies (e.g., notepad, pens, and clipboard) after observation inside a precaution room. observers also carried study information sheets for interested hcp and copies of verbal consent language for reference. collecting observation data at the beginning of each observation period, observers checked in with the unit nurse manager and clerk to explain the study and that they were on the unit to observe ppe use by hcp. observers then identified a precaution room to observe by the posted precaution signage and introduced themselves to hcp that appeared to be working with the patient. observers explained the study, obtained verbal consent from hcp, and addressed any hcp concerns, a sequential process which took less than five minutes. hcp who entered the unit during the observation period were consented as they arrived to care for the patient (e.g., mds and rounding teams). the most common concern from hcp was that our observers were monitoring hand hygiene compliance. while compliance to protocols can be paramount to appropriate health care and [qualitative research in medicine & healthcare 2021; 5:9821] [page 109] article no nco mm er cia l u se on ly patient safety, interventions focused on behavior change must be informed by an understanding of why behaviors happen in order to appropriately target factors that influence these behaviors. observation conducted in a systematic and non-judgmental fashion is a valuable method for developing this type of understanding. as such, our observers addressed hcp concerns by explaining that the goal of our research was to learn from them the challenges hcp face when using ppe while delivering patient care in order to develop interventions that improve ppe use to promote patient and hcp safety, with no punitive component or intent to catch or expose non-compliant behavior. the context-specific information would be used to develop interventions and recommendations that would reflect their existing work processes, environments, and challenges. given that the data collected would contain no identifiable hcp or patient information, verbal consent from hcp was deemed appropriate by the overseeing irbs. therefore, hcp concern about compliance monitoring was further addressed as part of the informed consent process in which observers explained that pii would not be collected, observation data would not be provided to supervisors or leadership, findings would be reported in aggregate, and that the observer would be focused on objectively describing how ppe is used, without opinions on such behavior, including perceived level of correctness. ultimately, refusal to participate was infrequent. verbal consent from the patient was also obtained before the observer entered a patient room. observers were instructed to move on to another precaution room if hcp or patients declined consent and to leave the area if they felt they were in the way of hcp or if they were asked to do so. as with hcp, patient refusal occurred infrequently and was typically associated with patient acuity. observation was not performed if patients were unable to provide consent. once consent had been obtained, observers situated themselves directly outside a selected room and recorded all activity using handwritten field notes. a separate field note was created for each observed room, beginning with a new informational header and brief physical description. if there was no activity at the chosen room, observers were instructed in advance to conclude observation after a few minutes, record lack of activity in the field note, and locate another room to begin a new observation. otherwise, length of each room observation was left up to the observer, depending on room activity. as a result, the number of individual room observations an observer could conduct within a single observation period—two to three hours on average—ranged widely from one room to 10 rooms. participant interaction observers may encounter several kinds of interactions during data collection that vary in relevance to the topic of research. during the observation period, participants may interact with their peers (e.g., other hcp), individuals in different roles (e.g., patients), or directly with the observer. important insights can be gained by observing participant interactions, whether or not the dialogue is directly relevant to the topic of research. interactions comprised of dialogue unrelated to the topic of interest may be described broadly in field notes to capture the interaction as an important part of the story even though it is not the main feature. for instance, the specific content of a clinical conversation between a nurse and patient is not relevant within the context of our study. however, the circumstances in which the conversation takes place may be important, as in the following example from our study: 9:06 am: rn1 entered room, does not gel [perform hand hygiene], stands ~1 foot away from the patient and asks questions. rn1 leaves and does not gel [perform hand hygiene] after. rn1 does not touch anything in the room. (enteric site 2 unit b outside [date] room 1 [observer initials]) although the particulars of the conversation were excluded, important information about the context of the interaction was captured in the description of the nurse entering and exiting the room without using ppe or performing hand hygiene. further context for observed behavior can be gained by documenting content-relevant dialogue, including perceptions, motivations, and intent. as such, observers were asked to document interactions pertaining to ppe within our data collection parameters (i.e., exclusion of all pii and phi), including but not limited to hcp teaching each other how and when to use ppe, ease or difficulty of use, and reasons why it was or was not used. in the following example, a group of two physicians and two medical students are observed as they approach the room of a patient under enteric precaution: md2 gels [performs hand hygiene], did not see anyone else gel before putting on gloves. all put on gowns over lab coats, did not see if used thumb holes [in gown wrist], then glove. md1 tied [gown] in front, md2 tied in back. md2 notes sign near door. they discuss cleaning before gloves. md1 states “i didn’t know we need to clean before putting gloves on.” (enteric site 2 unit a outside [date] room 2 [observer initials]) the conversation between physicians as they prepared to enter this precaution room revealed an incomplete understanding of the protocol for proper use of ppe when entering the room of a patient under precaution. this type of contextual information from a conversation among peers during the observation period can be used to identify [page 110] [qualitative research in medicine & healthcare 2021; 5:9821] article no nco mm er cia l u se on ly potential intervention opportunities or important areas for further study. although not engaged in the activity, it is acceptable for the non-participant observer to speak to participants. observers can ask clarifying questions of participants, and participants often offer explanations of what they are doing without prompting.6,24 participant dialogue may go beyond task-specific content, offering valuable insight into common challenges, workarounds, or institutional protocols relevant to their work. an example from our study demonstrates a participant explaining the reasoning behind their behavior to the observer: 3:24 pm: rn removes mask and discards it in the trash, stating, “i’m further than 3 feet away from the patient and am not facing him so i can take my mask off without risk of breathing in any droplets.” (droplet site 2 unit c outside [date] room 1 [observer initials]) participants may go beyond providing an explanation for their behavior by also telling the observer what additional factors influence their behavior. in the example above, the nurse effectively explains their behavior by citing the protocol that supports their mask removal when turned away three feet from the patient. a researcher can then compare this explanation to the written protocol to see if they align. the following example goes further by providing an explanation for a medical student’s (ms) incomplete understanding of ppe protocol: ms2 states that they have been told different things about following precautions and that when they are just going inside the room to talk to the patient and do not plan on any patient care, they do not have to wear ppe. (contact site 2 unit d outside [date] room 4 [observer initials]) if the medical student’s comment had not been captured, this observer may have noticed that the participant appeared confused as they prepared to enter the contact precaution room, but the reason for their confusion would remain unknown. the direct statement that they had received inconsistent information regarding what constitutes appropriate ppe use provides important context for not only the medical student’s behavior observed in this session, but also for general ppe use among hcp and education at the site. not observed vs. not performed a challenge observers may face in the field is a limited ability to observe and record activity. missed activity can happen for a variety of reasons, including simultaneous activity, visual barriers, or because tasks may have been started or performed completely outside the observed space. when observation is performed in real time without the aid of video or audio recording, it is to be expected that even the most diligent observers will sometimes miss activity or details. in this situation, the observer should indicate in their field note that activity was not observed: example 1: rn approaches door (did not see donning of ppe or hand hygiene because view was blocked) and walks in (does not touch door) wearing a gown and gloves. (contact site 2 unit b inside [date] room 3 [observer initials]) in example 1, the observer was not able to see the process by which the nurse donned ppe, but we can determine that it occurred prior to entering the observed space because the nurse enters wearing gown and gloves. although the nurse in example 1 may have performed hand hygiene when donning ppe prior to entry, these activities were not seen, which the observer clearly indicated in the field note. example 2: rn1 walks into the room wearing no ppe to pick up a solid white tube then sanitizes it with the wipe outside of the room. rn1 sets the tube on the computer surface outside then sanitizes her hands. (contact site 2 unit e outside [date] room 2 [observer initials]) although hand hygiene and the process of donning ppe were not observed in either example, donning of ppe was not only not observed in example 2, it was not performed, as indicated by the nurse entering the precaution room without ppe. there is an important difference between activity not included in field notes because it was not observed (example 1) and because it was not performed (example 2). observers should specify in field notes that activity was missed to clearly distinguish not observed from not performed. simultaneous activity is another reason an observer’s ability to see and document may be limited. in the hospital setting, bedside rounds performed by medical teams can bring up to a dozen people into the observation area. when a large group is present, choosing one or two individuals to focus on allows the observer to capture detailed data without becoming overwhelmed by all the activity. as with task not observed versus task not performed, it is important for observers to include in their field notes that they have made a decision to focus on one or two members of a group: a large medical team on rounds approaches room. there are 12 members of the team comprised of mds, medical students, and one pharmacist. this observation focuses on one md from the medical team. (enteric site 2 unit e outside [date] room 1 [observer initials]) [qualitative research in medicine & healthcare 2021; 5:9821] [page 111] article no nco mm er cia l u se on ly this observer’s annotation of their focused field note situates the context of the observed md’s behavior as a member of a team and also, importantly, clarifies that while other hcp were present and noticed, the field note was purposefully focused. post-observation protocol a post-observation protocol outlines what to do after each data collection session. the specifics of the protocol may vary by project and phase of data collection, but the overall goal is to preserve the content of what was observed in high-quality data. the protocol may be more involved during early data collection, with observers meeting to compare field notes or submitting field notes for feedback from other team members as they develop observation skills. the primary feature of a post-observation protocol takes place in the time directly following observation, when observers type their handwritten notes into an electronic document. the product of hours of focused observation will be pages of handwritten notes that likely contain shorthand, abbreviations, symbols, and mnemonics that make sense only to the observer who took them. it is therefore vitally important for observers to finalize field notes as soon as possible after observation, when details can be recalled easily.5,24 at this time, the handwritten notes are fleshed out into highly detailed, timestamped narratives, which are the data that observation yields (figure 2). because observation itself can be tiring, it may be tempting to delay this finalization process, potentially compromising data due to diminished recollection. to encourage prompt finalization, our observers were asked to block one to two hours following time in the field to complete this required part of data collection. ensuring data quality our post-observation protocol included additional steps during early data collection to support newly trained observers as they developed skill and comfort with the method. during the first three weeks of data collection following didactic training, observation was conducted in pairs. in addition to the development of observation technique in the field, paired observation provides a natural comparison through review and discussion of field notes recorded separately while observing the same activity. when reviewing together, observers can identify strengths and weaknesses in their own notes, as well as learn how their observation partner perceived and recorded the same activity. this ad[page 112] [qualitative research in medicine & healthcare 2021; 5:9821] article figure 2. field note from contact precaution room observation. no nco mm er cia l u se on ly ditional paired practice contributes not only to enhancing observer skill, but also to improved data quality. during the paired observation period of our study, observers typed their handwritten notes into separate documents, annotating notes to reflect their comparison conversation. examples of annotations included missed activity recorded by the other observer, details they had not thought to record, and information remembered during the comparison session. paired data collection, both in the field and while finalizing field notes, can help hone skills and build confidence until observers have demonstrated their ability to proceed independently. once individual data collection began, observation was conducted independently, and observers were given a maximum of 24 hours after observation to finalize field notes. to ensure high quality data, the post-observation protocol during early data collection can also include the submission of electronic field notes for review and feedback from study team members (e.g., methodologists and content experts). much like paired observation and review, providing feedback on typed field notes can be a temporary step in the after-observation protocol that is discontinued when observers consistently produce high-quality field notes. for our study, observers submitted field notes for multiple rounds of review by two core team members experienced in obseration for the first three weeks of data collection. to help observers improve clarity of description and prompt better attention to detail for future observations, feedback was often posed as content-specific questions (e.g., where did this stethoscope come from? what happened to this stethoscope after being used on patient?), demonstrated in figure 3. similarly, content-specific questions were used to help observers notice the omission of an action that should have been performed (e.g., was hand hygiene performed after ppe doffed?). through multiple rounds of review, research assistants honed their observation and data collection technique to include both what was and was not happening and learned the level of specificity expected in field notes and how to finalize field notes to produce coherent, detailed narratives. data management while specifics will vary by project, data management tasks may also be included in the post-observation protocol. we outlined a file naming convention, field note submission requirements, and data security protocol in our after-observation protocol. once comfortable with the data collection process, observers were asked to finalize and submit field notes within 24 hours of the observation period using a secure web-based platform (ctools). once [qualitative research in medicine & healthcare 2021; 5:9821] [page 113] article figure 3. field note from contact precaution room observation with feedback from methodologist. no nco mm er cia l u se on ly an electronic version has been created, handwritten notes should be handled in accordance with the approved irb protocol (e.g., filed securely, shredded, etc). although no phi or pii were collected during our observation, all handwritten notes were shredded once an electronic copy had been created. when observation is conducted in more than one place or under more than one condition, a highly-specific naming convention is useful for data organization and analysis. we identified important descriptive factors that could be used to meaningfully group field notes and applied them to our field note naming convention. for example, because our analysis plan involved comparison of hcp behavior and ppe use in contact, enteric, and droplet precaution rooms, we indicated precaution type in the file name for easy sorting. other important descriptors we included in our naming convention were site, unit, position inside or outside patient room, date, and observer. in addition to organizing data for analysis, a highly-specific naming convention can help the study team recognize oversampling or undersampling by factor during active data collection, when observation can be more readily redirected. finally, factors that distinguish between field notes should be included in the file name. for our study, multiple rooms at the same site, on the same unit, and with the same type of precaution were observed by the same person on a single date. to prevent confusion during analysis, observers assigned room numbers according to the order in which they were observed (e.g., room 1, room 2), and included the assignment in their field note header and at the end of the file name. while detailed, early adoption and continuous use of this convention resulted in a highly organized dataset throughout the study. the example below shows the descriptive information gathered in the field note header (figure 1) applied as a naming convention. convention: precaution type_site_unit_observation position_date_initials_room # file name: contact site 1 med surg 2b outside 01_03_21 xy room 2 observation data analysis observation data can be analyzed in a number of ways. field notes can be analyzed alone as the only source or type of data or in conjunction with other data. field notes can be coded and analyzed in much the same way as interview and focus group transcripts, through close reading of data and application of codes to facilitate identifying themes or patterns in the data.26-28 observation data can also be analyzed using a theoretical or conceptual framework.26,29,30 we conducted a directed content analysis of our observation field notes (325 individual room observations across two sites) to identify and characterize breaches in transmission-based precautions that could result in selfcontamination or transmission during routine hospital care.12 our theoretical framework was based on the systems engineering initiative for patient safety (seips) model31 used to examine the work system, processes, and outcomes. three members of our study team (authors) coded several field notes to ensure coding consistency, resolving discrepancy through discussion, followed by division of the remaining field notes for individual coding. nvivo qualitative software (version 10 qsr international pty ltd) was used to organize data and coding. given the amount of observation data, nvivo was a useful platform to apply coding consistently, sort data, and compare findings. code reports were generated after initial coding from which code application accuracy was confirmed and additional codes were identified. commonly observed potential self-contamination events and potential for transmission of an infectious agent were identified in review of the code reports. these events were then coded throughout the field notes and were further categorized as active failures such as violations, mistakes, or slips using an additional human factors model.32,33 active failures in ppe use across these three categories were examined to determine the contributing factors that should be addressed to reduce potential transmission during routine hospital care. complete results of this analysis have been reported.12 we also analyzed observation data with data from eight hcp focus groups conducted as part of our study in order to understand the factors in hcp decisions whether or not to don ppe.34 two members of the study team read the first focus group transcript and began constructing a codebook inductively. the remaining transcripts were then independently coded by the two study team members who met to compare coding and reconcile any discrepancies through discussion. as new codes were identified, they were added to the codebook and applied to previously coded transcripts. observation field note procedure for this analysis followed the same as focus group transcripts, with two team members initially reading several field notes to inductively develop codes, coding independently, and meeting to compare coding and reconcile any discrepancy. as with the content analysis, nvivo was used to organize and code our data. once these steps were completed for focus group transcripts and observation field notes, data were compared to determine consistency between what we saw (observation data) and what hcp described to us (focus group data). we identified several factors that affected hcp use of ppe and ability to follow precaution guidelines, including perceived risk of certain organisms and perceived risk of contamination related to different care activities, as well as organizational and environmental factors. in addition to validation of findings through comparison of observation and focus group data, or triangulation through multiple methods, we also looked for inconsistencies and disconfirming evidence between the two types [page 114] [qualitative research in medicine & healthcare 2021; 5:9821] article no nco mm er cia l u se on ly of data. because the goal of analyzing these data together was to better understand hcp decisions related to ppe use, inconsistencies between observation and focus group data offered additional insight on both intent and selfawareness of behavior surrounding ppe use and were described in our findings. for example, focus group participants reported different circumstances in which they may have experienced a potential exposure or selfcontamination (i.e., unprotected contact with a patient or surface in a precaution room), typically following an unexpected prompt (e.g., a phone/pager ringing, urgent patient care task needed, or patient initiating contact). in addition to these prompted behaviors, we also identified hcp self-contamination in our observation data that were the result of automatic behavior (e.g., scratching face, touching hair, and leaning against surfaces in the patient room), suggesting that hcp self-awareness may be a factor in self-contamination during different types of behavior. full results of this analysis have been reported.34 discussion observation is a valuable, but potentially underutilized, method in health services research. observation should be considered when research questions call for an in-depth understanding of current practices in highly complex settings. data gathered through observation may be fundamental to understanding how complex processes work in practice, forming relevant research questions and designing context-appropriate interventions. this paper provides a framework and practical example for developing a study protocol and using observation from start to finish in health services research. although the literature at the time of the study had identified concerns about ppe compliance using quantitative data, our analysis provided an in-depth understanding of the factors that influenced hcp behaviors and, in turn, compliance with recommended ppe practices. establishing a thorough understanding of current ppe use was integral to the ultimate objective of developing strategies to enhance effective ppe use and improve patient and hcp safety. moreover, we were able to provide specific insights and recommendations to each of the study facilities for helping hcp use ppe more effectively. non-participant observation performed by research personnel and students was well-suited for our research goals. with our dataset, we were able to better understand the nuances of the hcp experience including the habitual behaviors and the workarounds they have to use to make their work possible. findings from this study have been published in leading journals in the fields of infectious disease,35 internal medicine,12 and infection control;34,36,37 presented at annual research meetings via posters, a podium presentation, and an invited talk, and awarded one of 10 most notable american journal of infection control papers in 2020. we reported our findings locally to both participating facilities (an academic medical center and a va medical center) as well as to national partners to inform future infection control protocol and ppe design. further, given the current covid-19 pandemic, it is exceedingly important that we understand the use of ppe in practice to develop and implement interventions that support and protect hcp in their work along with patients. we took steps in our study to address the limitations of this method. observation is cost and resource intensive because staff must be trained thoroughly in observation data collection and topic-specific content. time can also constrain the amount of data collected, as each observer may focus on one situation (e.g., one isolation room) at a time. for our study, observation was performed by 11 individuals over nine months. while the cost of personnel time is high, we were able to collect a great deal of data in this time period compared to having fewer observers over a longer period. we were also able to leverage our budget for more observers by hiring a mix of six professional research staff and five nursing and pre-med university students. although contextual data are captured through observation, observers will not always understand the behavior or rationale behind the behavior observed. for this reason, our study also included focus groups where further explanation could be gained through questions and discussion. in some cases, observers may find it difficult to record what they see without intervening in the observed activity. also, ethical considerations may arise regarding observer obligation to intervene when an error or act with serious consequences (e.g., injury, death) is observed. while our observers were trained to report objectively on what they observed without interference or participation, we developed a protocol for what observers should do if they observed a serious patient safety issue. finally, while the hawthorne effect is often discussed as a limitation of observational research, this effect can be mitigated through clear communication with study participants.38 in keeping with the literature on the effect of the observer on participants, we found that hcp typically forgot we were there after a short time or engaged us in conversation, sometimes narrating what they were doing as they worked.7 these reactions to our presence suggest that participants resumed usual behavior during periods of observation. conclusions health services researchers use many data collection methods to address a variety of healthcare topics. incorporating observation can establish the key components involved in the topic of interest, a vital step in asking relevant questions, measuring appropriate variables, and designing effective interventions. whether used to inform another method, used alongside another method, or as the primary research method, observation can be used to describe what, when, where, and how something is happening across a wide range of healthcare research topics. [qualitative research in medicine & healthcare 2021; 5:9821] [page 115] article no nco mm er cia l u se on ly with this paper as a guidance document for planning and training study team personnel, we assert that observation is an accessible research method through which a solid groundwork of contentand context-specific knowledge can be established. done right, observers also gain participant trust and foster buy-in by demonstrating commitment to understanding what really happens from the people who live it. it is upon these rich data and relationships with participants that appropriate, informed interventions can be designed and implemented. the investment of time, training, and effort into gathering fundamental knowledge of the content and context in which implementation will happen is rewarded with greater effectiveness of eventual interventions and conservation of resources that may otherwise have been misused designing and implementing off-target interventions. takeaways based on our success in collecting and analyzing observation data, we offer a few suggestions to keep in mind when you are planning this type of research. consider using observation when your research question involves better understanding behaviors in context. build in time for training and feedback because observation is an acquired, systematic data collection skill. prepare and provide written resources to help observers navigate the field, including your data collection requirements and contact information for senior team members in case questions arise, (see appendix for our field note guide.) review data as you go to iteratively improve your observation tool and/or process. consider what other perspectives may be needed to address your research question, and include other methods like interviews or focus groups for robust data and findings. references 1. keller j, wolfensberger a, clack l, et al. do wearable alcohol-based handrub dispensers increase hand hygiene compliance?-a mixed-methods study. antimicrob resist infect control 2018;7:143. 2. kea b, alligood t, robinson c, et al. stroke prophylaxis for atrial fibrillation? to prescribe or not to prescribe—a qualitative study on the decisionmaking process of emergency department providers. ann emerg med 2019;74:759-71. 3. daliri s, bekker cl, buurman bm, et al. barriers and facilitators with medication use during the transition from hospital to home: a qualitative study among patients. bmc health serv res 2019;19:204. 4 . pettit ke, rattray na, wang h, et al. coming in warm: qualitative study and concept map to cultivate patient�centered empathy in emergency care. aem educ train 2019;3:136-44. 5. emmerson rm, fretz ri, shaw ll. writing ethnographic fieldnotes. chicago, il: university of chicago. 1995. 6. adler pa, adler p. observation techniques. in: denzin nk, lincoln ys, eds. collecting and interpreting qualitative materials. thousand oaks, ca: sage; 1998. p. 79-109. 7. bernard hr. research methods in anthropology: qualitative and quantitative approaches: rowman & littlefield; 2017. 8. atkinson p, hammersley m. ethnography and participant observation. strategies of qualitative inquiry thousand oaks: sage. 1998:248-61. 9. brinkmann s, jacobsen mh, kristiansen s. historical overview of qualitative research in the social sciences. the oxford handbook of qualitative research. 2014:17-42. 10. horwitz li. the importance of user-centered design and evaluation: systems-level solutions to sharp-end problems. jama internal med 2018;178:1023-4. 11. pope c, van royen p, baker r. qualitative methods in research on healthcare quality. bmj quality & safety 2002;11:148-52. 12. krein sl, mayer j, harrod m, et al. identification and characterization of failures in infectious agent transmission precaution practices in hospitals: a qualitative study. jama internal med 2018;178:1051-7. 13. gold r. roles in sociological field observation. social forces 1958;36:217-23. 14. higginbottom g, pillay jj, boadu ny. guidance on performing focused ethnographies with an emphasis on healthcare research. qualitative rep 2013;18:1-6. 15. punch kf. qualitative research design & collecting qualitative data. introduction to social research: quantitative and qualitative approaches. sage; 2013. p. 113-66. 16. taylor sj, bogdan r, devault m. participant observation: in the field. introduction to qualitative research methods: a guidebook and resource: john wiley & sons; 2015. p. 55-95. 17. green j, thorogood n. observational methods. qualitative methods for health research. thousand oaks, ca: sage; 2018. p. 151-78. 18. yin rk. doing fieldwork. qualitative research from start to finish: guilford publications; 2015. p. 116-62. 19. jorgensen dl. the methodology of participant observation. participant observation. thousand oaks, ca: sage publications, inc.; 1989. p. 12-26. 20. pearsall m. participant observation as role and method in behavioral research. nursing res 1965;14:37-41. 21. baker l. observation: a complex research method. library trends 2006;55:171-89. 22. creswell jw, poth cn. qualitative inquiry and research design: choosing among five approaches: sage publications; 2017. 23. mulhall a. in the field: notes on observation in qualitative research. j adv nurs 2003;41:306-13. 24. guest g, namey ee, mitchell ml. participant observation. collecting qualitative data: a field manual for applied research. thousand oaks, ca: sage; 2013. p. 73-112. 25. harrod m, montoya a, mody l, et al. challenges for nurses caring for individuals with peripherally inserted central catheters in skilled nursing facilities. j am geriatrics soc 2016;64:2059-64. 26. huberman am, miles mb. data management and analysis methods. in: denzin nk, lincoln ys, editors. collecting and interpreting qualitative materials. thousand oaks, ca: sage; 1998. p. 179-210. 27. dixon-woods m, agarwal s, jones d, et al. synthesising qualitative and quantitative evidence: a review of possible methods. j health serv res policy 2005;10:45-53. 28. dixon-woods m, bosk c. learning through observation: the role of ethnography in improving critical care. current opinion critical care 2010;16:639-42. [page 116] [qualitative research in medicine & healthcare 2021; 5:9821] article no nco mm er cia l u se on ly 29. glaser bg, strauss al. discovery of grounded theory: strategies for qualitative research: routledge; 2017. 30. elo s, kyngäs h. the qualitative content analysis process. j adv nurs 2008;62:107-15. 31. carayon p, schoofs hundt a, karsh bt, et al. work system design for patient safety: the seips model. qual saf health care 2006;15:i50-8. 32. reason j. understanding adverse events: human factors. bmj quality safety 1995;4:80-9. 33. reason j. human error: models and management. bmj 2000;320:768-70. 34. harrod m, weston le, gregory l, et al. a qualitative study of factors affecting personal protective equipment use among health care personnel. am j infect control 2020;48:410-5. 35. harrod m, petersen l, weston le, et al. understanding workflow and personal protective equipment challenges across different healthcare personnel roles. clinical infect dis 2019;69:s185-s91. 36. gregory l, weston le, harrod m, et al. understanding nurses’ workflow: batching care and potential opportunities for transmission of infectious organisms, a pilot study. am j infect control 2019;47:1213-8. 37. krein sl, kronick sl, chopra v, et al. comparing inpatient versus emergency department clinician perceptions of personal protective equipment for different isolation precautions. am j infect control 2020;48:224-6. 38. payne g, payne j. key concepts in social research. sage; 2004. [qualitative research in medicine & healthcare 2021; 5:9821] [page 117] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2020; 4:9102] [page 107] introduction end-of-life financial issues affect families all over the world.1-3 in the united states, out-of-pocket and informal care expenses in the last five years of life can cost between $28,000 and $61,000.4 several types of financial burdens exist, including paying for medical bills, paying for caregiving, and taking unpaid leave from work to attend to an ill family member. of course, these burdens can also occur all at once (see gardiner, brereton, frey, wilkinson-meyers, and gott5 for a thorough review). the research presented in this article elaborates on some of these issues from the experience of care workers who are having family discussions. first, this article will explore the existing research on financial issues in healthcare concerning individuals. next, the article will elaborate on how findings from interviews indicated that care workers and families both find themselves caught in a health care system that forces family members to face difficult options, and leaves individual care workers to help families find solutions. several studies have already examined how families are affected by financial issues based on the diagnosis. zafar and colleagues6 studied financial issues of those undergoing cancer treatments and their families. they named the financial hardships that accompany cancer treatment as financial toxicity, defined as “the negative personal financial impact of cancer care among the underinsured” (p. 388). after a stroke, medicare will cover invasive procedures at the hospital, but not the personal care needed afterward, including assistance with bathing and dressing.7 financial toxicity and the reality of medical care workers’ experiences discussing financial issues with families facing end-of-life decisions paula hopeck department of communication studies, bloomsburg university of pennsylvania abstract numerous studies have confirmed the presence of financial difficulties for families when a loved one is at the end of life. however, few studies examine the discussions family members have with care workers about financial issues during end of life. the research presented here examines the experiences that care workers have with family members expressing financial concerns and how care workers respond. i conducted in-depth interviews with fifty-eight care workers, defined in this study as clergy, patient advocates, and nurses who had experiences talking with families about financial issues. transcripts of the interviews served as the data set. i transcribed, coded and analyzed the data. families talk about financial issues openly, although sometimes guiltily. some families express difficulties implicitly, and in these cases, care workers often had to piece together information based on other statements and behaviors of the family. care workers suggest solutions at the interpersonal, organizational, inter-organizational, social, and national levels. findings also support prior research that it is important for families to have end-of-life discussions before death is imminent so that families may plan accordingly, and offer insights about care workers and their role in making financial discussions easier for families. correspondence: paula hopeck, department of communication studies, bloomsburg university, 400 e. second street, mccormick center for human services 1102, bloomsburg, pa 17815-1301. e-mail: phopeck@bloomu.edu key words: finances; end of life, thematic analysis. disclaimer: all views expressed in the submitted article are the author's own and not an official position of the institution or founder. acknowledgments: dr. robert j. green (bloomsburg university of pennsylvania), dr. mariaelena bartesaghi, and the two anonymous reviewers whose comments and feedback strengthened the article. conflict of interest: the author has no conflict of interest to declare. funding: this work was supported in part by an internal mini-grant from the office of research and sponsored programs at stephen f. austin state university to purchase nvivo 11 software. conference presentation: part of this work was presented at the 100th annual meeting of the national communication association in 2014. received for publication: 12 may 2020. accepted for publication: 5 february 2021. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:107-116 doi:10.4081/qrmh.2020.9102 qualitative research in medicine & healthcare 2020; volume 4:107-116 no nco mm er cia l u se on ly expenses are often unexpected, leaving those receiving treatment and their family members ill-prepared in a situation that is already emotionally draining. financial issues should not be ignored when weighing end-of-life options. covinsky and colleagues8 argued that finances do—and should—play a role in end-of-life decisions. one-fourth of participants in their study indicated that illness had caused financial hardship, including losing most or all their savings, or drastically altering plans (e.g., downsizing a home or delaying education). tucker-seeley, abel, uno, and prigerson9 noted families cope with two difficulties: the emotional loss of the family member and the depletion of financial resources. in some cases, the two are intertwined, such as when the family member who was ill served as the primary source of income for the family. financial issues may affect the care that individuals request. one study found that patients who have used up their financial resources have more costly, aggressive treatment because out-of-pocket expenses will be lower than what is covered by medicare.9 conversely, other researchers have found that financial difficulties lead to less costly, more palliative treatment.6-8 for example, one-fifth of participants in one study6 took less than their prescribed medicine, or skipped appointments to help pay for their treatment, and a smaller percentage refused treatments due to cost. in another study, financial difficulty was found to be associated with choosing comfort measures over aggressive treatments.8 these examples indicate that costs have some influence over the decisions that are made. thus, knowing the financial status of the person undergoing treatment and the family is critical to creating the plan of care. those receiving treatments tend to be more concerned about end-of-life finances than their proxies,10 or those they have selected to make their decisions. they want to discuss costs with physicians before making major decisions.11 scholars encourage physicians to be aware of financial burdens and direct them to available resources, such as social workers,8,12,13 or include treatment costs in advanced care planning.14,15 few physicians report knowing the financial difficulties of their patients.11 oncologists in one report recognized the importance of discussing costs, but may not be able to hold effective discussions concerning costs.6 the uninsured and those on medicaid can be mistreated by medical personnel.16 based on interactions with physicians, those on medicaid or without insurance can feel ashamed. these individuals may not go to the doctor as often as one way of dealing with the shame.16 notably, several of the studies cite the affordable care act’s expansion of medicaid as influential because medicaid recipients have long been perceived as lazy or undeserving of such benefits.16 additionally, studies report that once medicaid was expanded, medicaid recipients experienced poor treatment from medical staff (from doctors to receptionists) based on their insurance status.16,l7 these studies cast light onto the tenuous state and structure of medicine when it comes to financial issues. although, on the one hand, medical personnel recognize that talking about finances are important to the healthcare plan, the person undergoing treatment may not want to because of prior treatment by medical staff, feeling that they are stigmatized in some way.18,19 another gap is that the studies do not mention how finances might impact end-of-life care, other than medicaid patients are also low-income. this would not cover individuals who are not on medicaid but insurance may not cover enough of what they need for care. one of the few studies that did address financial issues and end of life specifically was conducted by bossuyt et al.,2 who surveyed general practice physicians on end-of-life preferences and educational level of families. they found that lower education levels were correlated with accessing fewer end-of-life treatment options and seeking fewer resources.2 however, the study was conducted in belgium, where there are policies for equity in palliative care options, and the study did not explore socioeconomic situations of those undergoing treatment. from the existing literature, it is clear that there are several issues in the healthcare delivery system in terms of finances. what is still unclear is how finances impact end-of-life discussions. additionally, the experiences of individuals who have experienced talking about finances have been documented, but less about the experiences of the care workers who are helping the individuals. therefore, a research question is posed: what types of end-oflife financial concerns are expressed to care workers, if any? additionally, once care workers are aware of financial issues, the question becomes what happens next. so, a second research question is posed: how do care workers alleviate the financial concerns of family members? materials and method the findings reported in this manuscript are part of a larger dataset from a previous study. the intent of the larger study was to examine experiences of care workers who managed end-of-life discussions with family members. all recruitment and interview protocol materials were approved by the institutional research board prior to data collection. participants in the initial stages of planning the overall study, several individuals of the medical team care for the person receiving treatment. i wanted the richest data set and to explore several parties that may deal with end-of-life discussions, so chose to utilize maximum variation sampling, which allows the researcher to determine if there are similarities between those who have different backgrounds and experiences.20 patient advocates act on behalf of oth[page 108] [qualitative research in medicine & healthcare 2020; 4:9102] article no nco mm er cia l u se on ly ers, serve as their spokespersons, and help with any issues facing those under treatment or their families.21-23 clergy, in addition to their primary role as spiritual and religious support, provide emotional support,24,25 and establish trust with those under treatment and families more so than anyone on the medical staff.26 finally, nurses are typically assigned fewer patients than physicians, and thus develop rapport.27,28 based on this research, i decided to exclude physicians from the study. additionally, social workers sometimes serve in a patient advocacy capacity (as i learned in my initial recruitment), and they were also included among the participants. recruitment i recruited participants through personal contact and listservs. i contacted independent consulting patient advocates, patient advocates (or representatives) of local hospitals and leaders of local churches. i also requested access to organizational listservs for national groups of patient advocates, nurses, and clergy. finally, i attended nursing conferences and approached presenters individually to ask if they would like to be interviewed. some participants contacted me because they heard about the study from mutual acquaintances or from other participants. recruitment attempts yielded 71 completed interviews, although only 58 participants discussed financial issues. these 58 participants included 14 hospital chaplains and parish clergy, 18 patient advocates, patient representatives, or social workers, and 26 nurses, hereafter referred to collectively as care workers. these care workers represented several different types of organizations, and their specific organizations will be identified below. data collection i conducted in-depth, semi-structured interviews with participants, 44 over the phone and 14 in person throughout 2012. interviews lasted between 18 and 118 minutes, averaging 53 minutes each. i asked all participants if they participated in or observed family discussions with patients occurring at the end of life, then followed up with appropriate probing questions based on their responses. later in the interview, i asked if families ever mentioned or expressed concern about finances. occasionally, participants told me how financial concerns arose during memorable family discussions. those situations were also included in the analysis. analysis i recorded, transcribed, and coded each of the interviews. during transcription, all identifying information was removed and each participant assigned a pseudonym. spradley29,30 provided the guidance for analyzing interview data. i started with open coding, where i conducted line-by-line coding following transcription. any response that had to do with finances was categorized in nvivo 11 as finances. similar to the constant comparative method, when certain patterns from the initial interviews became noticeable, i began to ask other structural questions,29 meaning that i incorporated findings from earlier interviews into future interviews. for example, i reframed the financial issue as, do participants ever say, “i want to do what’s best but i don’t…” based on terminology used in prior interviews. after the data was coded, i specifically focused on the finances code, known in nvivo as nodes. the first step that i took was to divide the responses between those who stated affirmatively that they held discussions about finances, or that finances had somehow played a role in their experience, and those who stated that finances were never mentioned. from there, to help organize the data further, i conducted a domain analysis. a domain analysis simply allows the researcher to develop semantic relationships between terms.29 a term that a participant used, toughies, was an in vivo (or in the voice of) code.31 to analyze what is a toughie and what is included, i looked to the rest of her statement to understand to what she was referring, specifically she introduced the term as a situation where “they [the family members] wanna keep them [the patient] alive until the end of the month so that they’ll die the first of the next month so they don’t lose the social security benefits for the month.” based on this description, a toughie did not fit into the overall financial concerns of caregiving, medical, or funeral related to end of life costs. participants who did mention this type of situation noted that this was an overall financial issue, not one related specifically to a type of expense. similar situations were noticed in eight other cases given by participants. this will be discussed below in the componential analysis. toughie was used by one participant and i would not classify it as a universal folk term (or a term used by several participants in their voice)30 by care workers, but similar situations were described. another participant described the rationale behind making the decision based on finances as not so nice. the phrase toughie captured this succinctly, and the emotional toll of the situation to all involved. following a domain analysis, spradley recommends a taxonomic analysis.29,30 as the frequency of financial discussions became apparent, in later interviews, i began to ask participants for examples of financial issues. when doing this, i examined each of the domains related to finances and listed more specifics. for example, paying for long-term care is an example of a caregiving expense. funeral costs include burial, cremation, and religious services. the full taxonomy is in appendix a. once i listed all the taxonomies, i conducted a componential analysis. componential analysis allows you to identify various attributes of a folk term.29,30 so, to use the example of a toughie, since this was an example used by a participant, toughie is a situation encountered by care [qualitative research in medicine & healthcare 2020; 4:9102] [page 109] article no nco mm er cia l u se on ly workers when a family’s decisions are affected by financial status. a toughie usually was an issue where the family was reliant on the person who is receiving treatment’s welfare or social security check and delayed withdrawing treatment. a toughie could also be a case where families brought personal financial issues into the hospital, such as a transfer of property ownership, but this was to a lesser extent. toughies were also situations that were expressed differently. this was also included in the overall analysis, namely, how these financial concerns were expressed. from there, i conducted a thematic analysis. for spradley, themes connect subsystems together. spradley defined a theme as any cognitive principle, tacit or explicit, recurrent in a number of domains and serving as a relationship among subsystems of cultural meaning (p. 186).29 for spradley, themes can apply to multiple situations, or domains, when speaking about analysis. one of the themes that kept arising was the unstated but perceived expressions of financial issues. these were not necessarily openly stated, but perceived as related to financial issues by caregivers. these also presume that while financial issues exist, there are other mechanisms that families deal with the exist beyond revealing them to care workers. in the results section below, the domains and taxonomies of the financial issues will be explored in greater depth. results the first research question asked, what financial concerns, if any, are expressed to care workers? as noted above, under the domain of end of life financial concerns were caregiving (n = 25), insurance (n = 16), funeral (n = 5), and medical (n = 3) expenses. beginning with the strict inclusions of the domain analysis,29 such as caregiving, insurance, medical costs, and funeral costs are kinds of financial expenses related to end of life. losing a job is a result of caregiving (cause-effect),29 and hospital or government will pay medical bills are beliefs about healthcare (rationale).29 one tacit, overall theme that kept recurring was the strain of a bureaucratic health care system that is a burden for those who are not usually considered financially unstable, and utterly unsympathetic to those who are financially unstable. this theme not only affects those utilizing the healthcare system, but also affects those in the health care system, making care workers in some cases piecing together and searching for options to help, and at worst, forcing themselves to detach. several care workers explained that financial concerns are not uncommon to end-of-life discussions (n = 47). about half of the concerns related to the general stress of determining the caregiving plan (n =25). the examples presented below sample some of the complexities that are associated with end-of-life financial issues. scott,1 a hospital chaplain, explained the common situation of families: “it happens every day because they go, for instance, the patient’s terminal, they wanna go home to die, family members, everybody works, who’s gonna take care of that patient? you know, “can we afford to hire a home health? probably not. now what do we do with ʼem?” so there’s always that dilemmanot always, many times that dilemma, that’s where the finance comes in even more so, and it’s getting worse rather than better… it’s becoming more and more of an issue and of a dilemma, “who’s gonna take of ʼem when we kick ‘em out of the hospital? i wanna do the right thing for ʼem, but i can’t lose my job for them to live 6 months at home and i can’t get my job back ... we’ve got kids in college and i need to support them, their tuition, i can’t afford to take mom into the house now and lose my job and lose my way of supporting my family.” scott’s example highlights the complexity of end-oflife caregiving that includes several issues that care workers mentioned over the course of interviews. namely, having the family members become caregivers may not be a possibility because the family must work. if a family member chooses to stay home, they can take leave as part of the family medical leave act (fmla) which nicole, an oncology nurse navigator, explained as “they have to be able to hold your job legally, they just don’t have to pay you.” olivia, a hospital patient representative, explained: “the financial aspect is a huge thing for people, it justit is, especially for the elderly patients, you know, they’re living so much longer and they’re in their 80s and money’s running out and how do you take care of them and it does come down to the family having to pitch in and take care of them, and yeah, the financial aspect of it is really difficult because you know these people are having copays and deductibles and all of that as well.” olivia’s example emphasizes the burden placed on families, and money’s running out indicates that several families are unprepared for the financial burdens at end of life. similarly, richard, a hospice nurse, noted the frequency of financial issues and lack of knowledge about financial resources. “it seems like it’s weekly that i come up with those sort of things, i mean i had another case where a lady, just ran out of money on rcfe [residential care facility for the elderly] so what are we gonna do? ended up having to find a skilled facility that [page 110] [qualitative research in medicine & healthcare 2020; 4:9102] article 1 all participant names are pseudonyms. no nco mm er cia l u se on ly would take her. so there, you have to pay your monthly, there’s no government [help]. i hear that medicaid is now starting to look at helping with that but for the most part, they don’t do anything.” in addition to the frequency of events, richard’s example reinforces that ultimately, it is the responsibility of the family to determine the course of action and to pay the bill. these three examples provide context for the range and frequency of financial problems that families may encounter in terms of caring for a family member at the end of life. another issue that was raised was hospice. hospice overall was lauded by the participants, but shelby, a palliative care nurse, explained that challenges can arise when requesting hospice. referring to a situation where a woman was brought into the hospital and her son decided she should receive hospice, shelby recalled: “there was no question that hospice would have been paid for and the family wouldn’t have had any expense and we got hospice arranged, he [the son] talked to two different hospices and the nursing home called us three times and said, “are you sure?” and even the son called me and i prepared him, i said, “the nursing home is gonna call you and tell you, they’re gonna try and do therapy with her.” he goes, “why would they do therapy?” i said, “i don’t know, but they’re going to tell you that. all you have to do is say, ‘no, i want hospice, we want comfort measures only, we want her to be comfortable.’” they called him, they called our social worker twice and said, “are you sure he understands?” and we’re like, “this woman’s 99 years old, can barely talk, can’t walk but somehow they’re trying to what we call “skill her,” they want that extra money from medicare because they get more money from medicare if they’re not with hospice so she’s a perfect example of what they’re doing is wrong because anybody, anybody with no healthcare experience at all could have said, “you can’t do therapy on this woman, she’s actively dying” but they called three times to try and get her skilled and not let her have hospice so those are things ... that i am having a hard time with.” without a care worker explaining and supporting, it is plausible that others might reverse their decision and not choose hospice. other care workers talked about how hospice, while beneficial, is not sufficient for some families or the requirements still place a strain on them. teri, a nurse who had worked in both hospice and oncology, recalled, that people are surprised “that hospice isn’t somebody coming and living at your house that’s paid for by medicare, even though it’s paid for by medicare, we weren’t in the home 24 hours a day, that was very shocking to people.” kathryn, a nurse liaison for a hospital system, explained, “even with hospice, you only get a couple hours a day, so somebody really has to be there, and often it is not even so much that the patient financial end of it, it is that they have to take off of work, and what impact it has on their income in addition to whatever happens with the family.” although hospice is beneficial, there are still some stipulations that can place a strain on families. financial concerns towards end of life also include funeral issues. three clergy members included the discussion of opting for cremation instead of burial based on finances. rachel, a nurse-turned-hospice chaplain, noted that some families she works with “are almost kind of forced to go with like a place that does affordable cremations and things like that even if that wouldn’t be their first choice because that’s really all they can do.” rachel’s description of being forced and cremation not being their first choice indicates that, while there are some options about decisions to make, the decisions themselves may be made for the families based on their financial status. one rabbi, kara, explained that financial issues put some in contention with what their own beliefs. after explaining jewish burial customs, kara noted that now “people know it does cost more to have a full burial with opening a grave and everything like that, than if you do cremation, it’s less expensive.” because cremation conflicts with religious beliefs and law, it also demonstrates the strain placed on families. kara explained there is a section in our cemetery that indicates that those who are unable to afford the traditional burial may be forced to be in a section of the cemetery that identifies them as not having the financial resources. although financial issues are common, some care workers observed that families feel guilty about expressing concerns. lily, a clinical social worker for an intensive care unit (icu), observed financial difficulty is a “very, very common concern ... people always say, ‘i feel so bad telling you this but ...’ ” similarly, when asked if families ever talked about financial issues, naomi, a nurse practitioner who also served a director of a palliative care center for a community hospital, said, “they do, and they talk about it guiltily, ‘i’d love to be able to take care of my mother, but i have to work, and i can’t afford to take care of my mother, and i have to choose one of them,’ ... and that’s a very difficult choice.” hannah, a nurse for a large health organization, also said that families can feel like “failures” in these situations. in addition to openly expressing financial issues, families may also express concerns implicitly. fifteen care workers observed that certain behaviors and comments indicated there were problems. one domain therefore became a means-end relationship,29 such as stating i have to work, saying we need food, and complaining about care are ways to express financial issues. for example, family [qualitative research in medicine & healthcare 2020; 4:9102] [page 111] article no nco mm er cia l u se on ly members might say an expensive treatment was not an option, or respond to their loved one needing more inhome care with have to work. samuel, a unitarian minister, stated, “[family members] ʼll say, ‘oh gee, we need food,’ but they won’t say, ‘dad’s dying is breaking us.’ because i don’t think people give themselves permission to say that and ... you don’t want cost to be the reason you make a medical decision.” samuel’s comment reflects that other areas of family life suffer from financial issues, including not having enough food. however, families may be unwilling to admit the financial burden of the illness. similar to the families who discuss financial issues guiltily, people do not want to discuss how costs are disrupting their lives. the toughies. as described above, there were nine care workers who referred to some situations as toughies, not-so-nice reasons, and heart-sinking situations for making decisions. eleven participants in total mentioned that some families relied on the person undergoing treatment as a significant source of income, which was aptly named by yvonne, a patient advocate consultant who also served on hospital ethics committees, who said “[some families] wanna keep them alive until the end of the month so that they’ll die the first of the next month so they don’t lose the social security benefits for the month. those are toughies.” roma, a nurse and unit-based educator, explained that family members never outright discussed financial problems with her, but did say: “i have heard them say quite the opposite, you realize after digging around a little bit, they’re keeping their 91year-old mother alive, really sick and really needs to move on and something comes up and all of a sudden, you realize what’s going on ... they won’t say, “well, we need her income” but it’s just like little things like, “we don’t know how we’re gonna cope without her, we live with her,” but that is when the light bulb goes on in your head ... “okay, now it’s becoming clear.” sandra, a bedside hospital nurse, said that no one ever spoke with her directly about financial difficulties. however, she recalled one situation where a man disappeared from the hospital after his wife died. the staff later learned that he had disappeared because “he had no money-to bury her.” based on these comments, care workers can sometimes determine the extent to which families may be concerned about finances without directly addressing them, and be aware of potential cues for financial concerns. this is not to say that every statement of i have to work from a family member is an indirect expression of financial problems, but perhaps should be explored in more depth by care workers. a smaller number of care workers also explained that families had no idea what was included in their healthcare concerns. sandra also noted with the families she works with, “i think actually if they felt they had to pay for it then they would have been more prone to pull the plug ... they really believe that the government is going to pay for it.” ophelia, a private practice patient advocate, also noted that in her initial assessment of her clients, she goes through financial issues: “because first of all, a lot of people don’t understand how their insurance even works.” it should be noted that situations where families appeared to hide issues or had an awareness of issues generally garnered sympathy from participants. some participants had a certain detachment or even numbness when talking about those issues, such as sandra from above, and kathryn, who noticed similar circumstances for some families. “you get these patients that the families will not write the dnr/dni because financially they’re living on the checks so they try to prolong it, and it’s interesting because very often those patients don’t have visitors, or very, very infrequent visitors, but it’s that income that they’re worried about.” other participants had a more critical view. speaking about one family he had worked with, scott said, “there was no question the family was wanting them to live as long as possible because of the welfare check.” nathan, a private practice patient advocate, did not believe it was in his position to talk about financial issues with families, stating, “i consider that to be their problem.” helen, an icu nurse, recalled a situation: “we had one patient...we could not get him any better than what he was and he was just going down the toilet, and the wife, she agreed to withdraw life support. but she couldn’t afford the funeral. didn’t wanna withdraw life support for two reasons. number one, she had to wait four days for his disability check to come ... and then she couldn’t afford a funeral ... so we held that patient before we withdrew life support for like four days. until she got her friggin’ check ... and then she withdrew life support and he died like within an hour, that’s how severe he was.” these types of situations may in fact be causing a perpetual cycle of dysfunction in the medical field well outside the scope of care workers, families, and individuals receiving treatment. based on this research, even individuals in stabile financial situations find themselves at the mercy of an unsympathetic system that forces them to choose between losing their job to become full-time caregivers, taking unpaid leave under fmla, or paying exorbitant out-of-pocket expenses for caregiving that may not be covered entirely by their loved one’s insur[page 112] [qualitative research in medicine & healthcare 2020; 4:9102] article no nco mm er cia l u se on ly ance. of course, there are individuals whose situation is even worse. solutions to financial concerns in end-of-life discussions granted, not all care workers were unsympathetic, and many did try to help. research question two asked how care workers try to help. looking at each of the identified financial situations, i separately coded situations where the care worker provided a solution or help. these were coded openly, and then axially,31 where i looked for common relationships between individual solutions. i recognized there were five general categories that solutions tended to fall under. the first was interpersonal, where care workers worked one-on-one with families to help them with finances, including discussing finances or personally writing letters to employers asking for time off. the second was organizational, where care workers asked other members or departments of their own organization for help. this included parish pastors reaching out to their congregants. the third, inter-organizational, included strategies where care workers reached out to organizations outside of their own, such as volunteer agencies or funeral homes. the fourth strategy, social, included care workers asking family members to ask their social networks for help. the final strategy, national, included when care workers would remind family members of national resources for them, such as fmla or veteran’s benefits. several of these strategies were straightforward, and involved connecting family members to resources that would be helpful. specifically, this section will focus on the interpersonal strategies, or how care workers connect with families one-on-one. these strategies typically involved care workers personally signing papers and writing letters to employers related to fmla. some care workers mentioned they would help them with the paperwork. for example, care workers can sign the paperwork or write personal letters to excuse the family member from work. to a lesser extent, care workers tailored their message to the families. gayle, a clinical social worker for an icu, related how she deals with the statement, “i don’t know if i can take care of mom,” another nuanced expression of potential financial difficulty, and how she thinks, “my role in that is really just helping them think through, ‘okay, well, what are your options and how can i help you through that.’ ” gayle specifically mentioned that instead of recommending to the family member that they should look into certain services, that she offers to look into those services herself. importantly, gayle noted she offers help on a case-by-case basis, meaning that this might not be covered in all situations where it is needed. it should also be noted that several of the patient advocates that participated often handled cases of individuals who, in addition to caregiving expenses, could also afford to hire a patient advocate consultant. while care workers noted hearing about financial concerns frequently, only two indicated that part of their solution was to validate the concerns of family. lily told family members, “of course, of course you would be [worried about finances], that’s normal.” lily [points] families in the right direction about where to find help. hannah, a nurse, reassured family members who feel like failures: “we spend a lot of time talking about care giving being the hardest job in the world and noticing in the hospital it takes a whole team to take care of somebody ... those families feel like failures and one of the things that medicine has to do is teach them, “no you’re not a failure, you’re just only one person.” although these are small statements, they may also alleviate one more concern during a difficult time for family members. these statements may also help normalize financial discussions and encourage family members to accept help offered to them. hannah’s statement also includes the responsibility of medicine in alleviating concerns, one of only a few that appeared to recognize the healthcare system itself is flawed and does not work for a majority of people. discussion the research presented in this article focused on the financial concerns that families express to care workers, and how care workers help families do express financial concerns toward the end of a family member’s life, including how to handle multiple financial responsibilities. however, some of these concerns are expressed indirectly. i am not claiming that financial reasons or costs of care were the sole reason for making decisions. most care workers, when asked about financial influences, did explicitly state no one made decisions based on finances alone. there is limited available research that examines the financial concerns expressed to care workers and how care workers respond. the research presented here is one of the few to do so. it should be noted, that this research was conducted in 2012, immediately following the great recession, and soon after the implementation of the affordable care act (aca). however, the research asked participants to draw on any experiences that they had over the career, and few situations were given a timeframe. it can be assumed that time is not necessarily a factor, and that financial issues have affected several people over the years. while participants occasionally mentioned factors related to aca (e.g., visiting hours expanded to 24 hours a day, and questions about the non-existent death panels), none of the situations noted above were a result of aca. additionally, at the time of this writing, there is discussion of the aca [qualitative research in medicine & healthcare 2020; 4:9102] [page 113] article no nco mm er cia l u se on ly going before the supreme court, putting coverage for thousands of americans at risk. these situations should be discussed to highlight some of the discussions that need to happen if people are unable to financially support themselves during end-of-life moments. this may also lead to a greater burden on care workers to help families find a solution to their end-of-life financial issues, or create further detachment. many participants noted in their solutions that financial planners and counselors were available through the hospital. however, a discussion may only occur when families vocalized concerns; whereas the more implicit expressions should also be assessed. in addition to the resources that hospitals offer, one area to consider would be greater transparency in what is included in health care plans, such as long-term care insurance, and in-home care. patient advocates discussed families’ understanding about what health insurance covers and what is financially reasonable. other research has already established that those undergoing treatment would like to have discussions about the costs of care.11 if such discussions were held at an early stage of the illness, the families might also be better prepared for what decisions to make, and have greater knowledge of what support is available. granted, if the illness is recent, families may be unable to process what is being said or see the long-term implications of decisions. however, this only provides further support for having end-of-life discussions well before decisions have to be made.32 finally, hospice is an inexpensive alternative for end of life, and often has several benefits in terms of quality of life. hospice, while invaluable, is widely misunderstood and also rife with problems, as explained by one of the participants. but, even if hospice is requested by family members, they may face pushback if the individual is in a nursing home and on medicare, who pays differently if the individual is on hospice, as opposed to skilled. this complex relationship between medicare, hospice, and nursing homes has been documented before,33 and a more directed discussion about this relationship should be explored for the future. the most important areas of focus concern how care workers can talk about financial issues effectively with families without being judgmental. authors of one study concerning religion and end of life encouraged care workers to explore meaning behind religious and spiritual statements that family members made without making judgements about religion.34 similar principles can be applied to talking about financial resources. for example, following up on why a treatment plan is not an option or why they feel they will be unable to cope without her. knowing something is not an option would be part of the care plan, so it is critical to understand why family members and/or those undergoing treatment are making such statements. understanding the reasons why family members have these concerns may help care workers refer family members to the resources they need. these need not be financial resources, but also social support. as noted by hannah, one of the nurses in this study, medicine should consider it part of their plan of care to help families to see that caregiving is a difficult job and they should not feel like failures when they ask for help. but perhaps even more so what is needed is that care workers need better training for helping individuals who are facing financial hardships, including anti-bias training. the bias may be a result of being part of a culture of a system that sees financial issues as an individual problem, and is utterly unsympathetic to the lack of resources available for working families, and to the potential needs of ailing members who want to be at home and cared for by their families. that is not to say that care workers do not already have resources and do not help, but looking at the types of solutions care workers offer, patient advocates have the widest range of solutions for families. perhaps including patient advocates automatically in any discussion of illness would be a resource to help families. clergy members did not hear as many financial concerns, which may be related to their role as a spiritual counselor. family members may have felt uncomfortable revealing financial hardships to them, perceive it was inappropriate to do so, or feel as though they might be stigmatized by the church in the future. however, koenig35 recommended more collaboration between religious communities and healthcare workers, since religious communities can provide networks for outpatient care and volunteering. similar services could also be applied to financial issues. indeed, some of the participants in this study talked about how they would reach out to the members of the church (or synagogue or mosque) and ask for help. additionally, although several care workers discussed financial issues, only two talked about how they validated the concerns of the family. if care workers do not normalize financial issues, families may be less likely to voice concerns. this could even include being overly sympathetic or pitying family members, which might not be as productive. finally, situations like the toughies exist with little direction about how to help or what to do. it should also be noted that some of the care workers openly expressed frustration with family members who would be considered the toughies, which, if perceived by the family, is not productive either. another area for care workers would not just be what to say to family members, but training them to say it as neutrally as possible. one area that might add an interesting dimension of this type of work would be the experiences of physicians and hospital administrators. although i made the decision to exclude physicians based on prior research21-28 about who builds rapport with families, the insight of physicians would also be of interest to the growing body of literature on the topic. general practice physicians, who build relationships with their patients over time, may have more ex[page 114] [qualitative research in medicine & healthcare 2020; 4:9102] article no nco mm er cia l u se on ly perience with dealing with the topic. those who have financial difficulties may have also built a rapport with the physician over the course of treatment and therefore feel more comfortable disclosing their needs to them. conversely, families may be more hesitant to express financial difficulties to physicians, several researchers have already established that medicaid recipients feel stigmatized by physicians and other providers because their insurance (or lack thereof) status.17-19 hospital administrators may not have direct contact with family members during discussions, but they may have more contact with families concerning billing and finances. olivia, a patient representative, also explained in her interview that, following treatment, those who had been treated would contact her to complain about care, stating that: “patients have actually said this to me, ‘if i go to my mechanic and my car’s not fixed, i don’t pay him,’ people say that kind of thing…i see more complaints related to billing even though patients don’t say that, they say it’s about their care and treatment, it’s the financial that’s really driving them to complain or they probably would have complained that day or a week later, not six months later when they get the bill.” because this article concerned family expressions, this statement did not fit into the overall themes and it could not be determined that this would apply to families. there are two implications of her statement. first, it is an interesting statement about how individuals can take control of their care and navigate a difficult system. future research should examine perceptions if complaints are about care, or about finances. second, it would be interesting to see if families also apply this strategy after their loved one has passed away. longitudinal research examining family satisfaction with care over time that correlates with financial difficulties may also yield interesting results. conclusions the research here indicates that it is not just a lack of insurance that can lead to issues, but a lack of overall financial resources to pay for in-home care, funeral expenses, and medical expenses. the question of end of life and family finances has no easy answers. however, greater understanding of the issues that families face can help hospitals facilitate discussions and create pathways towards alleviating end-of-life issues. research can also help care workers navigate the system that they find themselves guiding families through. this study offers insight of the issues that families face, including understanding the underlying concerns that may exist. knowing the concerns can allow us to explore creative solutions aimed at helping families during end of life. references 1. aoun sm, kristjanson lj, currow dc, hudson pl. caregiving for the terminally ill: at what cost? palliative med 2005;19:551-5. 2. bossuyt n, van den block l, cohen j, et al. is individual educational level related to end-of-life care use? results from a nationwide retrospective cohort study in belgium. j palliat med 2011;14:1135-41. 3. gott m, allen r, moeke-maxwell t, et al. 'no matter what the cost:' a qualitative study of the financial costs faced by family and whanau caregivers within a palliative care context. palliative med 2015;29:518-28. 4. kelley as, mcgarry k, gorges r, skinner js. the burden of health care costs in the last 5 years of life. ann intern med 2015;168:729-36. 5. gardiner c, brereton l, frey r, et al. exploring the financial impact of caring for family members receiving palliative and end-of-life care: a systematic review of the literature. palliative med 2014;28:375-90. 6. zafar sy, peppercorn jm, schrag d, et al. the financial toxicity of cancer treatment: a pilot study assessing out-ofpocket expenses and the insured cancer patient's experience. oncologist 2013:18;381-90. 7. tilden vp, thompson s. policy issues in end-of-life care. j prof nurs 2009;25:363-8. 8. covinsky ke, landefeld cs, teno j, et al. is economic hardship on the families of the seriously ill associated with patient and surrogate care preferences? arch intern med 1996;156:1737-41. 9. tucker-seeley rd, abel ga, un~ h, prigerson h. financial hardship and the intensity of medical care received near death. psycho-oncol 2015;24:572-8. 10. hawkins na, ditto ph, danks jh, smucker wd. micromanaging death: process preferences, values, and goals in end-of-life medical decision making. gerontologist 2005;25:107-17. 11. alexander gc, casalino lp, meltzer do. patient-physician communication aboutout-ofpocket costs. j am med assoc 2003;290:953-8. 12. lathan cs, cronin a, tucker-seeley r, et al. association of financial strain with symptom burden and quality of life for patients with lung or colorectal cancer. j clin oncol 2016;34:1732-40. 13. masel ek, berghoff as, schur s, et al. the pers20n score for systemic assessment of symptomatology in palliative care: a pilot study. eur j cancer care 2016;25:544-50. 14. donley g, danis m. making the case for talking to.patients about the costs of end-of-life care. j law med ethics 2011;39:183-93. 15. widera e, steenpass v, marson d, sudorc:~ r. finances in the older patient with cognitive impairment: he didn't want me to take over. j am med assoc 2011;305:698-706. 16. martinez-hume ac, baker am, bell hs, et al. "they treat you a different way:" public insurance, stigma, and the challenge to quality health care. cult med psychiatry 2017;41:161-80. 17. allen h, wright bj, harding, broffinan, l. the role of stigma in access to health care for the poor. milbank q 2014;92:289-318. 18. hirsch jk, sirois fm, visser pl, et al. perceived stigma and health-related quality of life in the working uninsured: does [qualitative research in medicine & healthcare 2020; 4:9102] [page 115] article no nco mm er cia l u se on ly thwarted belongingness play a role? stigma health 2019;4:1-10. 19. whittle hj, palar k, ranadive na, et al. "the land of the sick an4 the land of the healthy": disability, bureaucracy, and stigma among people living with poverty and chronic illness in the united states. soc sci med 2017;190:181-9. 20. patton m. qualitative evaluation and research methods. beverly hills, ca: sage publications; 1990. 21. baldwin ma. patient advocacy: a concept analysis. nurs stand 2003;17:33-9. 22. petronio s, sargent j, andea, l, et al. family and friends as healthcare advocates: dilemmas of confidentiality and privacy. j soc pers relat 2004;21:33-52. 23. schwartz l. is there an advocate in the house? the role of health care professionals inpatient advocacy. j med ethics 2002;28:37-40 24. ford t, tartaglia a. the development, status, and future of healthcare chaplaincy. south med j 2006;99:675-9. 25. wittenberg-lyles e, parker oliver d, demiris g, et al. communication dynamics in hospice teams: understanding the role of the chaplain in interdisciplinary team collaboration. j palliat med 2008;11:1330-5. 26. johnson ks, elbert-avila ki, tulsky ja. the influence of spiritual beliefs and practices on the treatment preferences of african americans: a review of the literature. j am geriatr soc 2005;53:711-9. 27. bailey jj, sabbagh m, loiselle cg, et al. supporting families in the icu: a descriptive correlational study of informational. support, anxiety, and satisfaction with care. intens crit care nur 2010;26:114-22. 28. hebert k, moore h, rooney j. the nurse advocate in endof-life care. ochsner j 2011;11:325-9. 29. spradley jp. the ethnographic interview. long grove, il: waveland press; 1979. 30. spradley jp. participant observation. long grove, il: waveland press; 1980. 31. tracy sj. qualitative research methods: collecting evidence, crafting analysis, communicating impact. malden, ma: wiley-blackwell; 2013. 32. li h, stewart bj, imle ma, et al. families and hospitalized elders: a typology of family care actions. res nurs health 2000;23:3-16. 33. miller sc, mor vnt. the role of hospice care in the nursing home setting. j palliat med 2002;5:271-7. 34. lo b, ruston d, kates lw, et al. discussing religious and spiritual issues at the end of life: a practical guide for physicians. j am med assoc 2002;287:749-54. 35. koenig hg. spirituality in patient care: why, how, when, and what 2nd ed. west conshohocken, pa: templeton press; 2007. [page 116] [qualitative research in medicine & healthcare 2020; 4:9102] article no nco mm er cia l u se on ly layout 1 before you can become a good storyteller, you first must be a good listener. practicing clinical ophthalmology for 38 years allowed me to absorb the stories of my patients. showing them signs of trust a firm handshake, a smile, a facial expression of concern let them know that i was there for them from the beginning. they appreciated that they had my undivided attention as they described their symptoms and their fears. worrying about going blind can shake you to your core. as a physician, i considered myself a teacher, as well as a healer. i worked hard to explain the nature of a patient’s condition so that we both understood what was going on and the plan to correct or ameliorate the problem. after a long and rewarding career in private practice, i concluded that the next greatest gift a physician can give a patient, other than a complete cure, is following this formula: provide an understanding of what is going on, delivered in simple terms with compassion. fundamentally, the job of giving care to others begins by showing respect while listening to the patient before arriving at a judgment. recently, i discovered the book in search of wisdom1 written by a monk, a philosopher and a psychiatrist. christophe andre, a french psychiatrist who writes selfhelp books, describes the characteristics of true listening that consist of: i) respect for the other’s speech; ii) letting go; and iii) the ability to allow oneself to be touched emotionally. he observes that listening is a process similar to humility, in which one puts others before oneself. in true listening, you do not prepare your response you just listen and let go. as a doctor in a large group eye care practice, i viewed my responsibilities to my patients to include not just professional competence but empathy. however, in the twilight of my career, certain stressors of life in general, and of medical practice in particular, challenged my innermost thoughts of personal strength. they ultimately forced me to seek a professional who would listen to my story. in 2015, i began to think seriously about winding down my practice. i had lost my father the year before. my mother required constant help at her home in arizona. i felt the emotional tug of a distant son as i discussed her medical condition, complicated by falls and recent major abdominal surgery, with her physician. an extended leave of absence from my practice might have been granted, but as a partner, being away from work meant that i would continue to pay for my share of the overhead expenses of the entire practice. moving toward part-time work would help free me from the obligation of paying for practice overhead. tension grasped me each night as i struggled to envision myself as a part-time employee rather than a managing partner. rather than opting for a salary, as our office documents stated, i preferred to receive a percentage of collections for my services. in that way, i would have an incentive to earn more, and the practice would not be penalized for paying an inflated salary if i had a light schedule. such an arrangement would make a leave of absence easier. the lawyer i met with asked me for my wish list, a package of wages and benefits that he would bring before my partners in a letter to our practice’s attorney. by the summer of 2015, i received verbal assurances from my partners that a mutually acceptable contract was imminent, once the practice’s attorney spelled out the details. from july until december, i waited. when the proposal finally arrived, i objected to the language for part-time work. unlike the provisions previously agreed to, the proposal allowed for my termination at the discretion of the partners, whether or not for cause. that was a deal-breaker for me. according to the proposed agreement, i would become an ‘at will’ employee with no guarantee that i would not be fired or replaced by another physician. the back and forth between the lawyer representing the practice and my counsel created an atmosphere of ‘us versus him’. the resulting uncertainty kept me awake at night. just before christmas in 2015, i informed my attorney and my partners that i would remain a full partner. i maintained that status until i later signed winding down, facing up: insights gained on the road to retirement paul pender medical doctor, usa correspondence: paul pender, medical doctor, bedford, new hampshire, usa. e-mail: paul@paulpendermd.com received for publication: 20 september 2019. accepted for publication: 11 october 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:120-123 doi:10.4081/qrmh.2019.8572 [page 120] [qualitative research in medicine & healthcare 2019; 3:8572] qualitative research in medicine & healthcare 2019; volume 3:120-123 no nco mm er cia l u se on ly a part-time employment agreement that contained terms i could live with. i felt considerable stress leading up to that final document. delays and vague language characterized the attorney’s emails as we looked to finalize an employment agreement for both a new partner and for me as a parttimer. both documents were completed and signed by the end of 2016. the difficult, drawn out process of becoming a parttimer left a bad taste in my mouth. within a few months of that major step toward winding down, i was notified that two surgeons planned to do their surgery outside our practice facility in a larger ambulatory surgery center (asc). the new entity could accommodate procedures more efficiently with two operating rooms, rather than a single room in the surgicenter i had built. their decision ultimately led to the closure of my center, the first asc established in new hampshire in 1984, which had served as the facility for thousands of successful eye surgeries. the disappointment i felt was profound. i felt blindsided by their decision. lack of consideration for my investment in equipment and in the facility infrastructure hurt me personally and financially. “it’s all about the numbers” was the conclusion of the surgeons who were abandoning the facility i built as a solo surgeon. the departing surgeons were under no financial or contractual obligation to use the facility i had established a generation ago. they had simply outgrown the space. if i were to continue doing surgery, i would have to become credentialed at the new facility and compete with my partners for block time on the surgery schedule. with self-interest paramount, my partners expressed the hope that the surgical staff would remain at my surgicenter until it officially closed and the new facility opened. they had been given an ‘offer they couldn’t refuse’ by the director of the facility owned jointly by a hospital and group of surgeon-investors. i learned to my chagrin that my partners’ plans for their future did not agree with my plans for winding down. i felt anger for not having received some indication of their thinking before it was a fait accompli. i was at the top of my surgical skills and experience, and i resented having to quit my surgical practice prematurely. i attempted to maintain my equilibrium at the office, but my emotional state was volatile. after work, my wife would weather my complaints about the future of my practice. the incremental disappointments and setbacks seemed to have a cumulative effect, stealing the pleasure i once felt going to work. my sense of a loss of control reached the level of professional burn out, and i told my wife that i would seek counseling. knowing how low my spirits were sagging, she thought it was a good idea. i called the confidential hot line at the new hampshire state medical society reserved for doctors looking for solutions to their personal problems. although i had experienced neither substance abuse nor compromised care of my patients because of my state of mind, i understood that i had to get out of my funk. on the hotline, i spoke to a doctor i had previously met at a county medical society meeting. she gave me the name of a counselor in the boston area who specialized in dealing with members of the medical profession, especially those feeling the effects of professional burn out. before my appointment with the behavioral psychologist, i reflected on my altered professional status over the preceding several months. winding down meant having to accept a lesser role in the management of my practice, something my ego resisted. giving up surgery was another blow to my self-esteem. and referring my patients for their operations to the same people whose decision drove me to quit doing surgery was especially humiliating. i drove around the psychologist’s neighborhood until i found the correct address of her home office. i parked on the street, looking at her front door, thinking about how i got to this point. i had reviewed an online checklist2 for symptoms and signs of depression: persistent sadness, self-loathing, loss of interest in activities, irritability and isolation, anxiety, loss of energy, disturbed sleep, change in appetite or body weight, reckless behavior and suicidal tendencies. although i did not think about self-destruction, i figured i scored on half of them, and that frightened me. each night i consumed junk food while watching meaningless sports on television to escape my dark mood. i was embarrassed to admit i needed help. despite all my training and surgical experience, i no longer felt like a bulletproof control freak. i waited until my appointment time, then locked my car and walked to her front door. the counselor welcomed me and showed me to her living room where the only other occupant was a golden-doodle the size of a pony. we became instant friends, that dog and i. is it a good sign that your dog likes me? i asked the psychologist. she smiled and said, sure, but don’t raise your voice. we had a good conversation, or more accurately, i got a lot off my chest. i felt the disappointment of shattered plans for succession at my surgicenter. i felt slighted for not having received an apology for the disruption my partners caused by their decision not to become investors in my facility. while their decision appeared selfish to me, the psychologist suggested that all businesses have a cycle and mine was coming to the end of its cycle. that comment gave me a new perspective on my predicament. i thanked her for her time and support. she asked how i expected to transition to the role of a part-time doctor who no longer performed surgery. i felt that i was still at my peak of surgical skill, but if i had to give up my surgical practice due to closure of my surgicenter, i would concentrate on what still gave me pleasure patient care. she then gave me some advice that would change me forever. i think it would help you to write. you articulate your situation very well, and others could gain from your experience, she said. [qualitative research in medicine & healthcare 2019; 3:8572] [page 121] special issue on physician mental health no nco mm er cia l u se on ly thanks. i’ll give it serious thought, i replied. the drive from boston to new hampshire gave me an opportunity for greater reflection. i turned off the radio. on the highway, i drove in the slow lane for a change, unconcerned by the speeding cars on the left. as i drove home, in the solitude of my car, i had a wake-up call. i had a choice: either i could remain miserable in my attitude and finish my career in a negative state of mind, or i could face up to reality. winding down came with the advantages of more free time, but it required a lessor role in decision-making in my practice. not having to attend partners meetings as a parttime employee meant others would be running the practice. letting go of major partner responsibilities necessitated handing those duties to others, and i had to accept that fact. my partners, free agents to choose where to do their surgery, were beyond my influence. the “wow!” my patients had expressed the day after i removed their cataracts would dissipate by the time i examined them postoperatively as a referring ophthalmologist. sure, they would appreciate my attention to their needs, but mine would become a supporting role in their surgical journey. if i truly cared about the experiences of my patients, i had to accept that my care would become more limited in scope. i was determined to get back on my horse after being thrown. i had not suffered serious damage from the fall, but i had been shocked and stunned for a time. i had suffered from events beyond my control, but i chose not to remain a victim. and i began writing about my thoughts, feelings and experiences as a physician and how they helped to shape the person i am. i received a statement from the psychologist for my only session, and i paid it with a sense of finality. she said that i could facetime her if needed, and i thanked her for her offer. the most important attitude adjustment for me was to once again feel comfortable in my own skin. worry is very destructive. anger uses up a lot of energy. the fight or flight response is natural, but when it occurs at inconvenient times it makes for a long, sleep-deprived night. i vowed to finish my tenure in practice by delivering the best care i could offer my patients. as i was winding down my career as a doctor, i envisioned myself as a successful writer, and i took steps to reach that goal. i attended annual meetings in 2018 and 2019 on writing, publishing, and social media for healthcare professionals directed by julie silver, md, of harvard medical school. my impressions of the 2019 meeting were published on kevinmd july 21, 2019, an excerpt3 of which follows. after finishing the pitch for my book, making lives better: how mentors and patients inspired a doctor’s work at the recent harvard writers’ conference in boston, i felt relieved and encouraged by the judges’ comments. as i waited for my turn at the podium, i glanced above my notes over the faces of 300 of my fellow attendees who had accomplished so much in their respective fields of medicine, nursing and counseling. “the pitches made by these would-be authors revealed an amazing resilience to the human condition. one attendee had been put up for adoption and became a prostitute in order to survive his surroundings. another speaker, a physician father, reported his son’s road to ‘recovery’ from heroin addiction, captured in his late son’s journal. he proposed ways for parents to intervene before it is too late. the meeting erupted in applause when he finished his pitch. women described ways for becoming ‘badass’ to face discrimination and attempted sexual harassment. how to overcome psychological and physical wounds became a recurrent theme. the challenge for many of those pitching an idea for a book in 70 seconds or less involved relating individual stories of triumph over tragedy. often, the presenters exposed themselves to an emotional cauldron to bare their hearts and souls to fellow attendees. pitch coaches labored unselfishly to strengthen what we proposed to write without a hint of condescension. these committed professionals led us on a journey of creation, improvement and commitment. they gave us confidence in our work and mission. if we do not believe in our work, who will? the course organizer created a supportive environment for stretching our talents and for surrendering control to the experts. the energy level of attendees was unlike anything i have experienced. dr. silver assembled a dynamic faculty and scheduled time for interaction with publishers and agents. returning in 2019 for a second helping of how to write nonfiction gave me a greater appreciation of what i want to accomplish and the confidence to try something i did not attempt during my medical career. both writing and public speaking put your personality and intelligence out there for public consumption. there is risk to such efforts, but the associated psychological rewards can provide a sense of fulfillment. in writing my memoir, i express gratitude to the mentors who helped me in my professional journey and to the many patients who inspired me with their warmth, humility, determination and humor. i’ll never forget the quip made by a patient facing eye surgery. don’t worry about me, doc. i have a high tolerance for pain. i attended parochial schools! the story does not end here. what makes this tale meaningful is how a personal voyage may instruct others to avoid dangerous shoals and to discover a successful passage. experiencing burnout, leaving a medical practice and finding another calling are among the challenges physicians may struggle with on the road to retirement. other voices besides mine have sounded the alarm. recognizing the symptoms and causes of burnout4 may drive us to seek help, as the work of maslach5 and oldenburg6 suggest. not all episodes of dark mood must be treated with medication. although it is uncommon, a single counseling session (drukteinis a. personal communication, 2019) may help manage stress, resulting in a new perspective. as kagan7 has pointed out, simply having an explanation of one’s [page 122] [qualitative research in medicine & healthcare 2019; 3:8572] article no nco mm er cia l u se on ly symptoms can be therapeutic because an understanding of the reason for uncomfortable feelings mutes uncertainty. separating the thought from the thinker allows our reasoning to take control of an emotional situation8, as described by susan david. expressive writing acts to diffuse unpleasant feelings, as the work of pennebaker has demonstrated.9 with his typical eloquence, abraham verghese describes how writing clarifies his thinking.10 i celebrate such writing and the impulse to write, the impulse to share some transformative incident that i am privileged to have witnessed. in my own writing, i often feel that i write in order to understand what i am thinking. mysteriously, insight comes (when it does come) in the very act of writing as if only by sitting with pen and pad can we snatch it out of the ether. in writing my memoir,11 i used a device inspired by one of the speakers at the harvard writers’ conference to describe the arc of my professional life. taking a legal pad, i marked major events along a time continuum. some episodes noted on my diagram dealt with my struggles to gain command of difficult material as a student. other events on the timeline listed procedures i had learned as a surgeon and later abandoned. i spent hours listing items i could recall that i felt were worthy of further discussion. i held my carefully constructed diagram at arm’s length to gain some perspective, an image of the big picture of my professional life. my arc of life was constructed from multiple stacks, the outline of which resembled a roller coaster track. the mini-arcs were composed of stacks of blocks, each piece standing alone, but when seen from a distance, they appeared part of a cityscape of buildings, some taller than others. the disappointments in life i envisioned as holes in the ground before something good was erected. writing has given me a new purpose and a source of pride, things i needed going forward after leaving medical practice. in the arc of my professional life, i look forward to adding a new dimension to my cityscape. mine is a newly found passion for writing nonfiction. the transition from doctor to writer is a work in progress, but the groundbreaking for the enterprise has begun. references 1. ricard m, andre c, jollien a. in search of wisdom. sounds true inc 2018. 2. facty health [internet]. 10 signs of depression. available from: https://facty.com/conditions/depression/10-signs-ofdepression/ accessed: october 2019. 3. pender p. a physician writes for catharsis. kevinmd 2019. available from: https://www.kevinmd.com/blog/2019/07/aphysician-writes-for-catharsis.html 4. fred hl, scheid ms. physician burnout: causes, consequences and (?) cures. tex heart inst j 2018;45:198–202. 5. doulougeri k, georganta k, montgomery a. “diagnosing” burnout among healthcare professionals: can we find consensus? cogent med 2016;3:1237605. 6. borysenko k. burnout is now an officially diagnosable condition: here’s what you need to know about it. forbes 2019. 7. kagan j. psychology’s ghosts: the crisis in the profession and the way back. yale university press 2012:223. 8. david s. emotional agility: get unstuck, embrace change, and thrive in work and life. avery. penguin random house 2016. 9. pennebaker jw. opening up: the healing power of expressing emotions. guilford publications 1990. 10. verghese a.the power of the personal essay in health policy. narrative matters. (foreword). johns hopkins university press 2006. 11. pender p. making lives better: how mentors and patients inspired a doctor’s work. in press. [qualitative research in medicine & healthcare 2019; 3:8572] [page 123] special issue on physician mental health no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2019; 3:8635] [page 139] to organize work in such a manner that it becomes meaningless, boring, stultifying, or nerve-racking for the worker would be little short of criminal; it would indicate a greater concern with goods than with people, an evil lack of compassion and a soul-destroying degree of attachment to the most primitive side of this worldly existence. e. f. schumacher, small is beautiful: economics as if people mattered and don’t make the mistake of calling us resilient. to not have been destroyed, to not have given up, to have survived, is no badge of honor. would you call an attempted murder victim resilient? tommy orange, there there dr. pamela wible’s latest book, human rights violations in medicine: a-to-z action guide, expands upon her ground-breaking work in physician and medical student suicide prevention,1-4 elucidating the systematically normalized circumstances that erode physician and medical student mental health. in it, wible details a step-by-step guide to: 1. reframing the abuses heaped upon physicians and medical students as violations of innate human rights; 2. labeling each violation in clear and concise language; 3. documenting each violation in a fastidious manner that supports legal action, should it be required; 4. reporting each violation to the appropriate personnel in order to deter further violations and safe-guard against retaliation; and 5. supporting those who have suffered violations so they may heal and continue their vital work in the medical profession. the cover of the book lists some of the most common human rights violations in medicine: food and water deprivation, punishment when sick, sleep deprivation, bullying, pimping, harassment, racism, violence, and sexism. reading those words on the cover made me cringe and swallow hard. suddenly, i heard echoes from my years in training and practice. this is just the way it is. if we don’t toughen you up, you’ll never survive in this career. suck it up. do you know how many people would kill to be where you are? if you can’t hack it, there’s the door. even years after the fact, those voices linger. had i received dr. wible’s advice during my years in medical school, residency, or medical practice, my personal experience with human rights violations in medicine née burnout,5,6 née system-induced distress7 might have ended differently. perhaps it still can. wible’s book and her mission fill me with hope: hope that we can eradicate human rights violations from this career that i love; hope that we can direct the compassionate care we show our patients toward medical students, residents, physician colleagues, and ourselves; and hope that we can shatter the stigma surrounding mental health diagnoses and prioritize mental healthcare for all. join me in hope. join me in recommending human rights violations in medicine: a-to-z action guide, the ultimate manual for physician & medical student self-defense. human rights violations in medicine: a-to-z action guide by dr. pamela wible erin nissen castelloe private pharmaceutical medicine consultant, san diego, ca, usa correspondence: erin nissen castelloe, private pharmaceutical medicine consultant, 12594 kestrel street, 92129 san diego, ca, usa. tel: +1.858.3546441. e-mail: erin.castelloe@gmail.com acknowledgments: dr. castelloe extends heartfelt thanks to dr. wible and the editorial staff of qualitative research in medicine & healthcare for this opportunity to join the conversation about medical student and physician mental health. contributions: erin nissen castelloe wrote and submitted this review of the book human rights violations in medicine: a-to-z action guide by dr. pamela wible. key words: wible; system-induced distress; burnout; physician mental health; physician suicide. received for publication: 21 october 2019. accepted for publication: 25 october 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:139-140 doi:10.4081/qrmh.2019.8635 qualitative research in medicine & healthcare 2019; volume 3:139-140 no nco mm er cia l u se on ly references 1. wible p. human rights violations in medicine. a-to-z action guide. pamela wible, m.d. 2019. 2. wible p. physician suicide letters. pamela wible md 2017. 3. wible p. what i’ve learned from my tally of 757 doctor suicides. the washington post 2018. available from: https://www.washingtonpost.com/national/healthscience/what-ive-learned-from-my-tally-of-757-doctor-suicides/2018/01/12/b0ea9126-eb50-11e7-9f92-10a2203f6c8d _story.html accessed: october 2019. 4. wible p. frank h netter md school of medicine commencement 2019. pamela wible, md 2019 available from: https://www.idealmedicalcare.org/ accessed: october 2019. 5. castelloe e. finding myself in medicine. qrmh 2017;1:15. available from: https://www.pagepressjournals.org/index. php/qrmh/article/view/6301 accessed: october 2019. 6. castelloe e. tincture of time. qrmh 2017;1:103-8. available from: https://www.pagepressjournals.org/index.php/ qrmh/article/view/6925 accessed: october 2019. 7. winner j, knight c. beyond burnout: addressing system-induced distress. fam pract manage 2019;26:4-7. available from: https://www.aafp.org/fpm/2019/0900/p4.html accessed: october 2019. [page 140] [qualitative research in medicine & healthcare 2019; 3:8635] book review no nco mm er cia l u se on ly layout 1 introduction the first part of the united states medical licensing examination, also known as step 1, has stood since its inception in the 1990s as a requirement for prospective doctors to obtain a medical license. for the purposes of licensure, performance on the exam is pass/fail. however, it has also historically been reported as a numerical score, which holds a critical role in applying for residency: it was the most commonly considered factor in an application by program directors in the most recent national survey.1 currently the invitational conference on usmle scoring (incus) is considering changing step 1 scoring to only reporting a pass or fail.2 many good reasons exist to move to pass/fail: it was never intended to stratify students, it may not predict performance in internship3 and test scores show gender and racial differences even after controlling for covariates.4 however, one important consideration should be the substantial toll on mental health and our capacity for professional identity formation that results from numerical step 1 scores. in recent years there has been a dramatic increase in awareness, research, and action concerning the mental health of medical students. a recent meta-analysis showed that 27.2% of medical school students showed evidence of depression or depressive symptoms, and a staggering 11.1% of students had suicidal ideation.5 a different study with over 1000 medical students had a prevalence of anxiety of 25.7%, and 11.7% of students had suicidal thoughts within the last year.6 when medical student suicides do occur, they rock the foundations of their communities and demand cultural and institutional action to address the ways in which medical education contributes to this epidemic.7 in its current form the usmle step 1 exam, in addition to its flaws as an objective differentiator of applicants, causes lasting damage to mental health and professional development, and a serious attempt to improve the wellness of medical students must include changes to the exam. it is not news that step 1 is a major stressor for medical students, but what may be surprising to some is how much the stress of step 1 can dwarf other seemingly pressing concerns. a director of medical student wellness at one institution was consulted about the role of step 1 as a stressor after having collected pertinent data from hundreds of students. at this institution, when asked to rate stressors from a list of 12, including the total amount of material that has to be learned, expectations of research activities, performing clinical skills, and loneliness, students rated step 1 as the greatest stressor across all four years of medical school. more to the point, fully a year before step 1, first-year medical students at one institution rated it as their single worst stressor. the way students react to this level of stress damages our broader development, but it is valuable to dwell on this point a little longer: first-year medical students should be worrying about other things, such as exploring future specialties, newfound responsibilities for patients, or pursuing research. the fact that a licensing exam over a year away, and only one of the three in medical school alone, stresses out first-year students more than anything else should give medical educators and legislators pause. medical student wellness and professional development are harmed by the current state of medical licensing examination: a student perspective on step 1 lucas lebovitz,1 brian wu2 1keck school of medicine of usc; 2psychiatry, lac+usc medical center, los angeles, ca, usa correspondence: lucas lebovitz, keck school of medicine of usc, 1975 zonal avenue, 90033 los angeles ca, usa. tel: +1.424.2473799. e-mail: llebovit@usc.edu acknowledgments: the authors would like to thank dr. chantal young, director of medical student wellness at the keck school of medicine of usc, for her permission in sharing her unpublished data. key words: usmle; medical student; wellness. contributions: ll; literature search and manuscript writing; bw; manuscript reviewing. received for publication: 25 october 2019. accepted for publication: 2 december 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:124-125 doi:10.4081/qrmh.2019.8639 [page 124] [qualitative research in medicine & healthcare 2019; 3:8639] qualitative research in medicine & healthcare 2019; volume 3:124-125 no nco mm er cia l u se on ly the way students prepare for step 1 can significantly derange wellness. students commonly beginning studying for step 1 years ahead of the exam, and studying intensifies during a period referred to as “dedicated time”, when surveys indicate students spend over a month studying for over 11 hours per day.7 studying for step 1 is isolating and damaging. in a lecture that one author’s medical school delivered to warn students of what lay in store, students were advised to tell their loved ones that they might be absent. the competitive outcome of the test even makes it difficult for some students to find commiseration in their peers. just as many students shut themselves away from friends or family to study, there is also a mass exodus months ahead of the exam from student-run clinics, specialty interest groups, music, sports, and other extracurricular activities. these passions outside of class that made students interesting applicants and buttressed mental health are all jettisoned like ballast. students are soon to be thrown onto the wards, and these experiences are needed much more than an encyclopedic knowledge of rare vitamin deficiencies to handle the stresses of the years of patient care. in addition to the damage to mental health, studying for step 1 hamstrings professional identity development. it is no secret that medical students have increasingly sought outside resources for education,8 but step 1 intensifies the issue. beginning often up to a year ahead of the exam, tens of thousands of students start to focus on expensive subscriptions to third-party question banks, videos, and review books, sometimes eschewing entirely the schools’ curricula. what these review materials give in purified basic science knowledge they lack in everything else that is necessary for a trainee to become a fully-fledged physician: explorations of alternative and integrative medicine, introductions to malpractice law and policy advocating, discussions of social determinants of health, and more. to be clear, this institution and others commit time to this aspect of the curriculum, but during step 1 studying students are intentionally often physically or mentally absent. what results is a new provider with a highly specialized education, much of which almost irrelevant to patient care. our future patients clearly don’t want a less competent physician, but they should be concerned to see humanistic care sacrificed for ballooning test scores. these months of myopia may be causing damage to the professional identities of students, but they are a smart group who knows the stakes in this game. little is more important for induction as doctors than that score, and the necessary steps to become future leaders in our fields, researchers, teachers, policy advocates, and members of the community are simply not tested on step 1. all students at some point are forced to sacrifice opportunities for growth to score a few points higher. an anonymous second-year medical student exemplifies this attitude in the following quotation, taken from a medical educator reporting student feedback on twitter: the issue is step 1. step 1 is the difference between having the option to do what i want for the rest of my life and a compromise. anything that gets in the way of that doesn’t seem helpful at the moment.9 for decades step 1 has been the tape with which we measure medical students. reliance on it by residency directors, for whatever reason, has resulted in an intensely stressful and myopic culture amongst medical students that has real mental health consequences. a pass-fail system for step 1 has been proposed, albeit with pushback from residency programs looking for objective metrics.10 others imagine a quartile or quintile system which dilutes the negatives of numerical grades. either solution is better than the status quo. the status of step 1 grading remains up in the air, and a final direction from incus has yet to be announced, so there remains time for physicians, legislators, and medical educators to argue for a more humane, and humanistic, method of education. if the medical community is serious about decreasing physician suicides, we must continue to make institutional-level changes such as these to address the damage caused to medical student wellness and future professional identities. references 1. the match. national residency matching program [internet]. results of the 2018 nrmp program director survey. available from: https://www.nrmp.org/wp-content/uploads/2018/07/nrmp-2018-program-director-survey-forwww.pdf 2. weiner s. should the usmle be pass/fail? association of american medial collegers 2019. available from: https:// www.aamc.org/news-insights/should-usmle-be-pass/fail 3. lee m, vermillion m. comparative values of medical school assessments in the prediction of internship performance. med teach 2018;40:1287-92. 4. rubright jd, jodoin m, barone ma. examining demographics, prior academic performance, and united states medical licensing examination scores. acad med 2019;94:364-70. 5. rotenstein ls, ramos ma, torre m, et al. prevalence of depression, depressive symptoms, and suicidal ideation among medical students: a systematic review and meta-analysis. jama 2016;316:2214-36. 6. maclean l, booza j, balon r. the impact of medical school on student mental health. acad psychiatr 2016;40:89-91. 7. muller d. kathryn. n engl j med 2017;376:1101-3. 8. burk-rafel j, santen sa, purkiss j. study behaviors and usmle step 1 performance: implications of a student selfdirected parallel curriculum. acad med 2017;92:s67-74. 9. carmody b. twitter 2018. available from: https:// twitter.com/jbcarmody/status/1079183928911638529 10. de haan jb, markham t, ghebremichael s. considerations of a resident recruitment committee on the usmle step 1 examination. acad med 2019;94:922-3. [qualitative research in medicine & healthcare 2019; 3:8639] [page 125] special issue on physician mental health no nco mm er cia l u se on ly layout 1 introduction parents of children suffering from a life-limiting medical condition struggle with difficult questions as they search for meaning in their life,1 and this inevitably emerges during medical visits. some parents are serene and collaborate with healthcare providers, whereas others are unpleasant and reluctant.2,3 in some cases, these negative relationships with the medical community can adversely affect the precarious health of the child. these parents find themselves at the crossroads between curative and palliative care, in a “psychological limbo”,4 with the death of their child expected within months or years to come. the existential ambivalence between providing care and letting go is always present for the parents, as well as for the medical caregivers. these children are supported by their parents and the healthcare providers to live as best as possible (palliative care), while also preparing for their death.5 the parents have to contemplate soulsearching questions concerning their own identity,1,6,7 and their role as someone responsible for themselves and for a life that depends on them.8 questions of meaning and of “why me?” inevitably arise.5 medical science is interested in the “how?” of the disease (biological and genetic explanations), while parents wonder about the “why?”. unfortunately, too often the discourses on the “how” and the “why” do not overlap.9 it is believed that the spiritual dimension of the parents’ experience may play a role in the resolution or attenuation of the suffering of those parents.5,10,11 spirituality, a complex concept to synthesize, usually includes aspects of meaning, beliefs, self-transcendence, connections and values. for this study, we were interested parents living with a child afflicted by a life-limiting medical condition: typology of their narrative identity sylvie lafrenaye,1,2 marc dumas,3 émilie gosselin,5 andré duhamel,4 patricia bourgault5 1department of pediatrics, university of sherbrooke, sherbrooke; 2center for clinical research of the sherbrooke university hospital, sherbrooke; 3center of contemporary religious studies, university of sherbrooke; 4department of philosophy and applied ethics, faculty of letters and human sciences university of sherbrooke; 5school of nursing sciences, faculty of medicine and health studies, university of sherbrooke, québec, canada abstract parents of children suffering from a life-limiting medical condition struggle with difficult existential questions. our objective was to understand why those parents’ interactions with the medical world were so different, ranging from hostile to collaborative, with the themes of identity, spirituality and serenity. a grounded theory design based on the narrative identity framework was used to interview sixteen parents. three categories emerged: i) parents in the almighty category delegate all their power to god or medicine and are the most suffering parents as they do not author their life; ii) parents in the me category make every decision on their own causing much anxiety, and they become rebarbative to the medical world; iii) parents in the guide category take advice from others, while remaining the authors of their stories and are the most serene parents. understanding and recognizing these categories can have a major impact on communication with those families. correspondence: sylvie lafrenaye, department of pediatrics, university of sherbrooke, 3001-12e avenue nord, sherbrooke (québec), canada, j1h 5n4. tel.: 819.346.1110 ext. 74634. e-mail: sylvie.lafrenaye@usherbrooke.ca key words: parents; children; life-limiting medical condition; serenity; interviews; qualitative analysis. conflict of interest: the authors declare no conflict of interest. availability of data and materials: all data generated or analyzed during this study are included in this published article. ethics approval and consent to participate: the ethics committee of the cr-chus (centre de recherche du centre hospitalier universitaire de sherbrooke) approved this study (no 09-085-r1). the study is conformed with the helsinki declaration of 1964, as revised in 2013, concerning human and animal rights. all patients participating in this study signed a written informed consent form for participating in this study. informed consent: written informed consent was obtained from a legally authorized representative(s) for anonymized patient information to be published in this article. received for publication: 10 june 2020. accepted for publication: 1 april 2021. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2021 licensee pagepress, italy qualitative research in medicine & healthcare 2021; 5:9174 doi:10.4081/qrmh.2021.9174 [page 36] [qualitative research in medicine & healthcare 2021; 5:9174] qualitative research in medicine & healthcare 2021; volume 5:9174 no nco mm er cia l u se on ly mainly in the identity-integrity aspect of spirituality. hence, we defined (and limited) spirituality as self-realization and the realization of an existential project mediated by the search for meaning.12 the concept of identity has many definitions. it can be understood as personal, cultural, professional, psychological, etc. the narrative model of identity provides an inclusive and exhaustive account of identity. it gives an irreducible role to the firstperson perspective, unique to everyone. narrative identity is also dynamic and intersubjective. it provides the individual with a sense of unity and purpose in life. paul ricœur suggested a theoretical framework of narrative identity.13 identity is divided into two notions: “who am i?” (ipse) and “what am i?” (idem). ricoeur defines the “what am i?” as what we retain to remind ourselves of who we are as we age and as time passes.13 in contrast, the “who am i?” is more difficult to grasp. the ipse identity is constructed through negotiation, as well as links and relationships with others. this is expressed by the promise we make to others, and this defines us. according to ricoeur, this identity that we build from our life narrative ensures the cohesion of our lives.13 when illness arises in one’s life, a change in narrative takes place. individuals form a narrative identity by integrating their life experiences into an internalized, evolving story of their self. the life narrative integrates one’s reconstructed past, perceived present, and imagined future. several authors discuss the experience of a chronic illness as a biographical disruption or rupture.14,15 then, biographical work is done to construct the resolution of suffering associated with the presence of the illness in our life.16 as we choose the aspects of self-realization and the realization of an existential project as our main theme of spirituality, we amalgamate the concepts of the search of meaning, identity and achievement of a life project into the construction of the concept of spiritual identity. following the chaos of diagnosis,1 parents either find meaning in what they are experiencing (possibly to decrease their suffering), or due to a lack of finding a purposeful meaning, their existential suffering persists.5 this construction of meaning is a process and an inner journey that comprised of several elements, including spiritual identity, moral values, priorities, and beliefs. from this inner journey, serenity may arise. this serenity, or lack of it, should be noticeable during medical encounters.17 we define serenity as a state or quality of being serene, calm, or tranquil, and a spiritual experience of inner peace that is independent of external events.18 why is serenity so important? a lack of parents’ serenity is often felt by those involved in the care of their child. this in turn may hinder the parent-healthcare provider collaboration that is so essential for the welfare of children suffering from a life-limiting medical condition.2 however, little is known about the associated effect of spiritual identity and serenity on parents’ interaction with the medical world. a better understanding of this effect could allow caregivers to provide tailored support to parents of life-limited children. materials and methods aim the goal of this study was to understand why interactions with the medical world were so different among parents of life-limited children, ranging from hostile to collaborative, from anxious to serene. we explored how the theme of spiritual identity could be linked to their state of serenity, or said otherwise, to their state of suffering. design we used a qualitative study design based on a constructivist approach. as our objective was to understand the links between the concerns, the actions, and the narratives of a group, in this case, parents of children with life-limiting disease, we opted for a grounded theory design.19 in this approach, when a person lives in a social situation, he or she is the only one who can construct and give meaning to his or her behaviour.20 participants recruitment was limited to parents of children with lifelimiting disease, with life expectancy of less than 20 years old. recruitment was completed through references by specialized clinical nurses and pediatricians who were caring for such sick children, after publicising our study. in our cohort, the children suffered from severe neonatal neurological conditions, severe hypotonia of unknown cause, neurodegenerative diseases, and congenital diseases. to be included in this study, the parents of the sick child had to live together, be in stable economic condition and willing to share their thoughts about living with a sick child. these decisions were made to avoid data contamination by financial worries, which are common in many single-parent families caring for a child with chronic illness.21,22 participants known by the interviewer were excluded to avoid bias. all participants were french speaking. participants were recruited until data and category saturation were reached. data saturation was reached after eight couples were interviewed, meaning eight fathers and eight mothers participated. procedure and data collection two in-depth interviews, at least two months apart, at the parents’ home allowed parent-researcher co-constructions of data. all interviews, conducted by an experienced pediatric intensivist, were audiotaped and transcribed, after consent forms were signed. the fact that the researcher was a physician, well aware of the signs and symptoms of most of the children’s diagnoses, allowed for the themes of the study to emerge more rapidly, without losing time in explaining the treatment and care pro[qualitative research in medicine & healthcare 2021; 5:9174] [page 37] article no nco mm er cia l u se on ly cedures for each of the children. interview guides were prepared by the research committee and evolved throughout the study to get the most in-depth responses. data collection and data analysis were conducted simultaneously in an iterative manner. the first semi-structured, in-depth interview was done with both parents together. parents were asked to talk about several aspects of the situation: the experience of their life while living with their sick child, and the emotional turmoil that results, how they would change something in their life, “why me?” and their appreciation of their relationship with the medical world. a phenomenological analysis of their story was completed after the first encounter to produce a literary narrative. during the second interview, this literary narrative produced from the previous interview and printed in a booklet was read to them.23 this approach ensured the accuracy of the comments gathered during the first interview and allowed the parents to feel understood, involved and acknowledged. parents were invited to comment or change the narratives after the narratives were read to them. none of the 16 parents made any comments on their narrative. all the parents kept the booklet; however, they were all more interested in continuing to unfold their stories. the second sets of interviews were held individually, with each parent being questioned separately to allow in-depth discussion surrounding the themes of spirituality and identity. the interview guide then included questions about what aspect of the interactions was the most helpful and about parents' definition of “spirituality.” they were also asked how they imagine their answer would be different 10, 20, or 30 years from now, as spirituality is linked to the concept of self-realization. most specifically, parents were asked to define themselves by answering “who am i?”. at least two months separated the two encounters to allow a more comprehensive view of their lived experiences. during the interviews, the researcher captured the ambiance, atmosphere and serenity of the household and parents by paying attention to their words, gestures, attitude, welcoming moments, and feeling of the encounter. serenity, as opposed to a state of suffering (a state in which chaos, anger or lack of understanding are prevalent),18 was palpable during the interviews. in this context, we assumed that being serene is a state felt both at home and during medical visits, and this would have to be recognized in their interactions with the medical world. no serenity or suffering numeric scales were used to avoid parents to be restrained and influenced by a numeric answering questionnaire, as this project takes place in a constructivist approach, and also to avoid social desirability. ethical considerations this study was approved by the local research ethics committee. recruitment was carried out through pediatricians and staff nurses at the chus (sherbrooke university hospital). parents were told that this research was investigating how to live with a sick child, but they were not aware of the serenity and spirituality aspect of the study to avoid bias and changes in their attitude. parents’ quotes were identified by a code, including m or f for the mother or the father, and 1 or 2 for the first or second interview to ensure anonymity. during the analysis, the child’s given name was modified to assure confidentiality and to avoid recognition. participation was voluntary and parents could withdraw at any time. data analysis interviews were transcribed verbatim to be used for analysis. quotes presented in this paper are free translations. open coding was done using the qualitative data analysis miner software (qdaminer, provalis research, montreal, canada) by members of the research committee to obtain inter-rater agreement. triangulation (of theory, data, and observers) was carried out subsequently.19 then, categorization of data took place. parents’ transcribed interviews were interpreted considering the theoretical framework of narrative identity of paul ricœur and our concept of spiritual identity.13 according to the approach described by paillé and muchielli, data were also interpreted in the context of parents’ serenity, seen as a continuum.24 hence, the parents were classified into three groups: not serene, moderately serene, and serene, assessed subjectively by the researcher during the interview and by the content of the transcripts. this categorization was inversely proportional to their suffering that was expressed by complaints, anger, tears, and especially the chaos of their life so far, either now or later on in their life. results eight fathers and eight mothers of eight children were recruited. the children of these parents were aged between three and eight years old, with life expectancies of less than 20 years. we gathered 26 hours of interviews and collected over 800 pages of verbatim transcripts out of 24 interviews (8 couples, 16 individuals). an overview of the participants included in the present study is shown in table 1. typology of parents in three categories data analysis led us to a typology of three categories: i) almighty, ii) me, and iii) guide. these categories are not clear-cut and may change for different aspects of their life. the categorization was not dichotomous, rather a continuum of their spiritual identity in the context of their life with a sick child (figure 1). the almighty category is represented by a parent delegating his or her power to the other, whether that be god or science or medicine. parents in the almighty category trust the other absolutely, to the point where they do not feel they are the authors or masters of their story, they are only actors. either they did not want to author the script [page 38] [qualitative research in medicine & healthcare 2021; 5:9174] article no nco mm er cia l u se on ly of their experience or they were too shocked to be able to do so. for example, one mother said: “do we get angry at him, do we rebel? in this case, we’re all alone or, instead, he knows everything, he has an explanation for this, which we may never know.” (mam2). the me category is at the opposite end of the spectrum. parents in the me category were proud to say that they are self-made and autonomous, that they do not rely on anyone and that they decide everything on their own. these parents carry a heavy burden on their shoulders: “[do you believe in a higher power, a god, a guide who protects?] no, absolutely not… i would say that it’s me… i want to run my life, i’m in charge.” (mem1). these parents are under tremendous stress and have difficulty imagining the future. the serenity of the me parents is compromised by the stress they put on themselves, now and in the future to “save” their child from the medical world that they don’t trust: “we can’t rely on others” (naf2). the guide category was somewhere in between trusting completely and only the other or trusting completely and only themselves regarding the care to give to their child. parents in the guide category listen and take advice from others, but remain the authors of their own stories and choices. they were serene and hence, allowed themselves to listen to the health professionals, while remaining confident in their decisions for their child. they allowed themselves to be guided, while maintaining their identities. “they’re just tools that he [a psychologist] gave us to fill our toolbox. that’s made us come back together as a couple. it’s us that came back together, and then it’s us who made it possible.” (mim1). they expressed freedom in the choices they make of their life “i was going to make the hyperbaric chamber, [the doctors] were against it. ... so i learned what? to lie to them because they were never open to what i could live” (mim1). they felt free to learn: “i have a drive to know, to learn [life] ... to infinity “ (mif2). [qualitative research in medicine & healthcare 2021; 5:9174] [page 39] article table 1. characteristics of the children. hospital stay represents the number of time the child has been hospitalized. pain was assessed by the parents in relation to the medical conditions per se. medical conditions were: i) severe neonatal neurological conditions, ii) severe hypotonia of unknown cause, iii) neurodegenerative diseases, and iv) congenital diseases. child 1 2 3 4 5 6 7 8 sibling rank 2/3 2/2 4/4 1/1 1/1 2/2 1/1 3/3 gender f f f m f m f f age (years) 5 4 8 4 3 6 8 8 hospital stay + +++ ++ ++ ++ + + pain (0-100) 50 90 5 30 95 80 5 20 medical condition 1 3 2 3 4 3 1 2 cognitive impairment +++ + +++ ++++ + ++++ + ++ figure 1. co-construction of conceptual framework with parents and researchers. the conceptual framework includes the concepts of ricoeur’s narrative identity and the restricted aspect of spirituality retained in this study which is self-realization. in summary, the child’s illness leads to a narrative done as a subject by the parents. this expression helps to find meaning and imbricate the parent’s identity which will move (or not) with time to self-realization. no nco mm er cia l u se on ly spiritual identity as we decide to restrict the complex concept of spirituality to the person’s self-realization, a concept linked to growth, progress, plan or difference for the future, we chose to add questions about how the parents would imagine themselves in years to come. the main factor linked to serenity of the parents was the recognition and establishment of a spiritual identity (figure 2). this was especially apparent when analyzing their answers regarding their projection of the future: would they want to be the same or would they want to evolve into a different person? the most serene parents were looking into the future with confidence and peace, hoping to see themselves more conscious of their affective and interpersonal potential. “i will be different, i will evolve” (mom2); “i want to calm down, but i want to keep my spark” (sem2). serenity was felt to be subjectively comparable for both visits (months apart) for every family. defining themselves (who am i?) was quite difficult for most (15 of the 16) parents. only one mother was able to easily answer. she was the most serene parent observed in the group. she is an example of the concept of serenity: “when he is sick, and it’s not going well, i always give him the choice: “if you want to go, mommy will let you go. but if you want to stay, i’ll be very happy.” because, for me, my little boy is not a burden… it might not be easy when he’ll be ready to go, but i’d do things the same way if i had to do it again.” (mom2). for the parents in the almighty category, they did not have a concrete answer to the question: “who am i?”: “it’s a very tough question because who i am… this one doesn’t come easily. basically, i don’t know. that’s the answer. i don’t know myself… i don’t know who i am” (maf2). these parents tend to conceive themselves as medical technicians more than as parents. for one mother, who sincerely trusted medical professionals, the following statement is very revealing:“ [a therapist told her]: “you’re going to give up your role as a therapist… you’re just doing your role as a mother” … the homework she gave me this week was to take [my daughter] in my arms. …i haven’t done it yet this week. …it always annoyed me to give her a bath. i’m lucky because now it’s caregivers who do it… physical contact, i’m not able to do that yet” (mam2). this mother had turned everything over to medical professionals. this mother and her husband were considered exceptional parents by the therapists; they respected all prescribed exercises in a remarkable manner during the first years of life of their child. these parents believed that if they listened to the medical authority, their child would return to normal. however, this did not happen. they were devastated and did not know “who” they were anymore. parents in the me category can define themselves in the present, but projecting themselves in the future is a harder task, almost impossible. since all responsibilities and decisions remain solely on their shoulders, they are exhausted and do not want to think about tomorrow, either for their child or for themselves. “physically, i think this is making us age a lot. … it creates stress… the condition of [my daughter] forces us to make decisions that make me feel under much pressure … we can’t rely on others… all choices are on our self” (naf2). for these parents, the expression “living for today” or “one day at a time” does not indicate a zen mentality. it seems to seems to be an escape from having to think about tomorrow, because this is too terrifying and distressing. “on this point, i have not changed much, for 20 years ... i’m fine” (rof2). they don’t look at changing or evolving as individuals, as life is so rough. parents in the guide category define themselves simply: “i am a person similar to everyone else. i have a dark side and a light side, but i’m very optimistic. …in my heart, i’m still 10 years old, i’m rolling in the snow out[page 40] [qualitative research in medicine & healthcare 2021; 5:9174] article figure 2. typology of parents’ spiritual identity. the parents’ narrative analysis lead to three groups for spiritual identity: the parents in the almighty group give all control to the other (medicine or god) and do not act as author of their life. the parents in the me group put all the decisions on their own shoulders. despite a strong identity, they are unable to project themselves in the future because of tiredness. parents in the guide group felt guided by the other but keep authorship for decisions concerning their child. parents’ suffering was linked to these categories. no nco mm er cia l u se on ly side… i think life is beautiful.” (mom2). for these parents, projecting themselves into the future is neither difficult nor distressing. to the question, “who will you be in 10 or 20 years from now?” they answered in a serene fashion: “i hope i have grown. i like to learn… i hope that in 20 or 30 years that i will have experienced many things… i hope i will have grown enough to be above many things” (mim2). when they think about the future, they see themselves as transformed. “being present, but in my body, but also in my soul, then laughing at it, “... (sem1) summary of results parents were categorized according to the analyses of all verbatim transcripts (figure 3). the main factor linked with the serenity of the parents was the establishment/ recognition (or not) of a spiritual identity, or said otherwise, a narrative self-realization, now and in the future. parents in the almighty category do not see themselves as the authors of their own stories, thus undermining their spiritual identities and the meaning they give to their lives with their sick child. parents in the me category are quite serene in the present and are able to define themselves, but they have difficulty imagining their future; self-realization requires the energy to look further than the present moment. parents in the guide category are the most serene; they are able to spiritually define themselves and can serenely imagine their future. discussion our objective was to understand why interactions of parents of children suffering from a life-limiting medical condition with the medical world were so different, ranging from hostile to collaborative, from anxious to serene. we worked with the themes of identity, spirituality, and serenity. a grounded theory design was used to interview sixteen parents. our objective was to explore how the parents’ spiritual identity (defined as self-realization) could be linked to serenity while caring for a child with an incurable disease. a typology correlating this association emerged from our study. to be a parent is to be a person. as the parents’ narrative is a story with a beginning, a middle and a potential finale, the actual story of their life with their sick child was coconstructed with the main researcher. the life narrative is presumed to provide a sense of unity and purpose in life. as our concept of spiritual identity is linked to self-realization, the parents’ narratives were used as a proxy to understand their relationships with the medical world. our typology is reminiscent of those on the role of narratives in the resolution of suffering associated with chronic illness, previously reported in the literature (table 2). the almighty category is comparable to the restitution,16 accommodation,8 stable,25 trapped,26 the constant and the invalid classifications,27 proposed by different authors. the me category is reminiscent of the chaos,16 re[qualitative research in medicine & healthcare 2021; 5:9174] [page 41] article figure 3. results of typology per parents’ category. the typology in three groups linked parents to either serenity or suffering. the 16 parents are divided almost equally amongst the groups. the number f in parenthesis represent the number of females (mothers). table 2. comparison with other typologies. lafrenaye (2020) almighty me guide frank (2013) restitution chaos quest gray (2001) accommodation resistance transcendence robinson (1990) stable regressive progressive nicholas (1999) trapped embedded adaptative meldrum (2009) constant patient and invalid weary soldier and decision maker stoic and postive thinker bray (2014) continuity disruption enrichment no nco mm er cia l u se on ly sistance,8 regressive,25 embedded,26 the weary soldier and the decision-maker,27 as described by the authors of these studies. the guide category is similar to quest,16 transcendence,8 progressive,25 adaptive,26 the stoic and the positive thinker.27 the authors of those studies used different research designs, but their typologies include three categories, similar to the ones described in the present study. after six studies, these classifications could be considered empirically sound. our categorizations of the parents’ decisions related to the medical world could also be described by ‘heteroautonomy–closed autonomy–open autonomy.’ parents in the almighty category show a hetero-autonomy, as they are obedient and dependent upon medical caregivers to make all the decisions about care of their sick child. by contrast, parents in the me category show closed autonomy, as they decide everything on their own without taking advice from others – including medical caregivers. parents in the guide category could be described as open autonomy, as they neither turn decision-making completely over to medical caregivers nor take the burden of decision-making solely upon themselves. our study allows an additional explanatory element, which is that of the role of spiritual identity. living with a sick child who will die before the parents is disturbing, challenging, and requires great selflessness. existential questioning keeps coming back to the parents’ minds. the relationship to the other/other is central. spirituality leads to the question of the other and the other. the other being the transcendent entity that oversees our lives, whether that entity be god, the cosmos or universal intelligence.28 the “other” is the term for the people circulating around the parents. the quality of the link to the other or the other leads to the construction of a robust identity, allowing an inner freedom, a freedom that the parents in the almighty category do not reflect.29 they are prisoners (opposite to freedom) of the medical world, becoming therapists, and not parents, for their child.30 they are not serene because their child was not “cured,” as they thought would happen with their good therapists’ care. they are disappointed, distressed, and sad. the me parents do not trust anyone for their decisions concerning their child. their overwhelming freedom locks them, the other could never be a rescue.7 their overall relationships are challenged or compromised.6,7 the meeting point of spiritual and serenity concepts is found in the ideas of evolution and transformation, as expressed by the parents in the guide group. serenity, characterized by its qualities of freedom, fluidity, calm, and comfort, includes as does the concept of spirituality, a relationship to the other/other, now and in times to come. indeed, the two scales found in the medical literature measuring serenity suggest that serenity is an intrinsic component of spirituality.18 kreitzer concludes that the serenity scale captures a state of acceptance, peace, and an inner confidence, distinct from the elements sought by scales exclusively for spirituality.18 kruse suggests that serenity is the “human becoming perspective.”31 hence, serenity and spirituality are adult developmental concepts describing the essence of being human.2 our definition of spirituality limited the concept of self-realization, but in the end, it includes other aspects, such as beliefs, connection, and trust. according to our data, this construction of identity goes with beliefs in whom you trust, with whom you agree to keep (or not) a relationship: either god, your family or the medical world. as tuval-mashiach and colleagues noted, in our cohort, every parent had compromised relationships with their family members, either as a cause or a consequence of living with a very sick child.7 inevitably, this loss of family closeness becomes part of their narrative identity of the sick child’s parenthood. implication for practitioners speaking medically, even when reviewing diagnostic or therapeutic plan, is always intimate for parents who are so involved in everyday care for their child. the medical caregivers are never completely neutral or objective; our own narrative identities are always present in any medical encounter.32 some caregivers like to be listened to and respected in every suggestion; while others never want to influence parents and let the parents make every decision. but if we link these caregiving characteristics to the type of parents we have presented, an adjustment in the discussion style could be made for the benefit of the child and his/her parent. with the almighty parents, a total obedience might not be the best attitude to promote, as the child will not be “cured,” despite all the parents’ efforts, and this will lead to more suffering in a long run. with the me parents, clearly orienting and supporting the medical care choices could alleviate the extra stress those parents put on themselves. implications for parents and practitioners interactions with the medical world is a ubiquitous reality for parents of a child with a life-limiting medical condition. the research encounters between the researcher and the parents led to a co-construction of narrative identity for the parents. the parents read their own phenomenological story, and this could have led some parents to refine their own identity and led to self-reflection about their life with their sick child. how they interact with the health professionals could lead to a comprehension of their spiritual-narrative identity and, hence, influence the discussions to alleviate hostile or negative encounters. a useful tool for health professional caregivers is to be aware of their own spiritual identity while observing the parents’ attitudes toward themselves and toward their child.11,33,34 some parents in the almighty category may need to be reminded that their primary role is to be the parents of their child and not their therapist. therapists [page 42] [qualitative research in medicine & healthcare 2021; 5:9174] article no nco mm er cia l u se on ly should be reminded that obedient parents are quite rewarding to them, but that can deter parents from their primary role of parenting love for their child. furthermore, helping almighty parents to remain parents despite all advice and therapies ordered is a challenge, meaning that they can make their own choices despite “therapeutic orders,” as they should remain the authors of their life. parents in the me category may need to be encouraged to reflect on the deleterious long-term effects of always wanting to take everything on their shoulders as fatigue and lifelong anxiety can be harmful to them and, therefore, to their child. the guide parents are often the ones who “enrich” the healthcare professionals by their serenity and their search for self-realization. caregivers and therapists should recognize the importance of their words and roles in the construction of identities and narratives of parents of a sick child.16 limitations and strengths even if months separated the interviews, it is possible that the parents’ serenity or suffering would change in months or years to come. life is dynamic, and other events will challenge the identity construction with biographical oscillations and flows.15,35,36 hence, medical encounters will always be a relationship challenge. bias in the choice of the families is possible, but care was taken to choose objectively (upon the advice of healthcare professionals implicated in the care of the children, all unknown to the main researcher). the strengths of this study stem from its uniqueness. few studies have been done on the integration of spirituality in the interpretation of the relational interactions of parents-health professionals. another strength of this study was its methodological rigour. team analysis enabled the principal researcher to discuss iteratively with co-researchers the coding, themes, and sub-themes, leading to the emergence of a coherent, interpretative, thematic mapping. field notes were taken and used to verify acuteness of themes revealed by the verbatim coding. conclusions the goal of the study was to understand why parents’ interactions with the medical world are so different, ranging from hostile to collaborative, working with the themes of identity, spirituality and serenity. three categories emerged from the narrative interviews: i) the almighty, delegating their power to god or medicine; they are the parents who suffer the most because they do not seem to author their own lives; ii) the me, making every decision on their own causing much anxiety and becoming objectionable to the medical world; iii) the guide, taking advice from others, while remaining the authors of their stories and being the most serene parents. understanding and recognizing these categories can have a major impact on communication with families. caring for very sick children is complex, but one should not set aside the importance of interpersonal skills in improving the care of these vulnerable children. future studies are required to evaluate how improving the recognition by healthcare professionals of their own spiritual identity could led to a better future for the very sick child and their parents. references 1. benkel i, molander u. a qualitative study of the experiences of parents with an adult child who has a severe disease: existential questions will be raised. inquiry 2017;54:46958017727107. 2. scorgie k, sobsey d. transformational outcomes associated with parenting children who have disabilities. mental retard 2000;38:195-206. 3. charmaz k. loss of self: a fundamental form of suffering in the chronically ill. sociol health illness 1983;5:168-95. 4. sheikhzakaryaee n, atashzadeh-shoorideh f, ahmadi f, fani m. psychological limbo as a barrier to spiritual care for parents of children with cancer: a qualitative study. asian pacific j cancer prev 2018;19:1063-8. 5. nicholas db, barrera m, granek l, et al. parental spirituality in life-threatening pediatric cancer. j psychosoc oncol 2017;35:323-34. 6. wilson c, cook c. ambiguous loss and post-traumatic growth: experiences of mothers whose school-aged children were born extremely prematurely. j clin nurs 2018;27: e1627-e39. 7. tuval-mashiach r, hasson-ohayon i, ilan a. attacks on linking: stressors and identity challenges for mothers of daughters with long lasting anorexia nervosa. psychol health 2014;29:613-31. 8. gray de. accommodation, resistance and transcendence: three narratives of autism. social sci med (1982) 2001;53: 1247-57. 9. raines da. suspended mothering: women’s experiences mothering an infant with a genetic anomaly identified at birth. neonatal network 1999;18:35-9. 10. abdoljabbari m, sheikhzakaryaee n, atashzadehshoorideh f. taking refuge in spirituality, a main strategy of parents of children with cancer: a qualitative study. asian pacific j cancer prev 2018;19:2575-80. 11. anum j, dasti r. caregiver burden, spirituality, and psychological well-being of parents having children with thalassemia. j religion health 2016;55:941-55. 12. sheldrake p. the new westminster dictionary of christian spirituality. louisville: westminster john knox press 2013: p. 702. 13. ricœur p. time and narrative. university of chicago press; 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[page 44] [qualitative research in medicine & healthcare 2021; 5:9174] article no nco mm er cia l u se on ly layout 1 dr. robert wilkie should have been a happy man. he was exactly what he wanted to be in life, an emergency physician and hospitalist in a small, close-knit community. his work was a source of pride and pleasure, as were his religious community, his family and ice hockey, the sport he played growing up in canada. yes, dr. wilkie should have been a happy man, and for the most part, he was. yet an undertow of melancholy always tugged at him. he usually kept his head above water, but sometimes the tug was so strong he feared he might drown, and this fear would set off a severe bout of anxiety and agitation. dr. wilkie’s father experienced many years of depression and wilkie assumed that he had inherited from his father whatever snippet of dna was responsible for that constant tug. perhaps because it was a small town where everyone seemed to know everything about everyone or perhaps it was his fear that his board might find out about his psychological problems, dr. wilkie tried to keep his struggle to himself and did what the new testament exhorted, medice curate te ipsum physician, heal thyself which wilkie took to mean treat yourself. when his psychiatrist’s treatment did not control his anxiety and agitation, he prescribed anti-anxiety medications to himself. ultimately he became dependent on them to control his symptoms, although he never used them to excess. and never did his anxiety and depression, or the medications he used to control them, affect his professional comportment or clinical acumen. and, as his profession demanded, on the surface, he was as calm and clear-eyed as a glass sea. for many years, dr. wilkie was able to keep his struggles a private matter between himself and his personal psychiatrist. as investigative reporter p.j. randhawa described in a televised interview with him in may 2019,1 “he was managing it pill by pill with anti-anxiety medications”. in his 33 years of practice in canada, oklahoma and missouri, never was there a complaint about his professionalism and never did he have a brush with the law more serious than a traffic violation. however, in 2008, while he was working at st. francis hospital, a patient lodged a complaint that he had stolen her prescription for a controlled substance. the hospital administration became concerned and ordered a drug test on him. the test was negative, but, because he could not provide unassailable proof to counter the patient’s accusation, he was eyed with suspicion. at the hospital’s urging, he sought an evaluation from his state physician health program (php). phps are organizations affiliated with state medical boards that are intended to provide compassionate care to physicians struggling with mental health and substance abuse issues while keeping patients safe by monitoring their clinical performance. as p.j. randhawa1 stated, phps are supposed to help doctors with addiction or mental illness get well and return to practice. the problem is, once you ask your php for help, you’re no longer in control. your php decides where you go for your treatment. rather than creating an individualized support and monitoring plan near his home that would allow him to maintain his ties with patients, family, friends and religious community, the php immediately pressured him to go to two board-affiliated out-ofstate evaluation and treatment centers. because he did not meet the diagnostic criteria for inpatient or residential treatment, he had to pay for these services in cash. his confinement lasted five months and cost him his entire cash savings of $50,000. dr. wilkie said that these facilities did nothing for him. he would routinely see a psychiatrist who asked him the same thing each time, hey bob, how ya feeling? he would answer the same way each time, terrible. the response a physician’s descent into abject poverty for seeking help from a php anne phelan-adams consultative medical services, blacksburg, va, usa correspondence: anne phelan-adams, consultative medical services, 1724 sage lane, 24060 blacksburg, va, usa. e-mail: aphelanmd@gmail.com acknowledgments: i wish to thank p.j. randhawa, investigative reporter with ksdk news 5 in st. louis, missouri for her efforts in exposing malfeasance by state medical boards and their physician health services organizations. key words: depression; anxiety; self-prescribing; physician health. received for publication: 31 october 2019. accepted for publication: 19 december 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:136-138 doi:10.4081/qrmh.2019.8647 [page 136] [qualitative research in medicine & healthcare 2019; 3:8647] qualitative research in medicine & healthcare 2019; volume 3:136-138 no nco mm er cia l u se on ly was often, sorry to hear that. but nothing more. no recommendation for changing his medications. no support groups. no ancillary treatment like biofeedback or meditation. not even compassion for his predicament. although he was in constant contact with others, never had he felt more isolated, powerless and insignificant than he did in those five months. only his religious faith and determination to return to home and medical practice sustained him. after a seemingly interminable confinement, dr. wilkie was finally given a clean bill of health to return to medical practice. while he was away, his position at st. frances was filled by another hospitalist and, because of his now tarnished reputation, it took him months to find another position. he finally found work covering the practice of a colleague who was recuperating from a serious illness. he was thrilled to be practicing again but the thrill was short-lived. during his absence from work, wilkie’s bureau of narcotics and dangerous drugs (bndd) license had expired. in missouri and many other states, a bndd or similar license is required for a physician to prescribe scheduled (potentially habit-forming or addictive) medications like narcotics. unaware of the lapse, he continued to refill prescriptions for scheduled medications that his colleague’s patients were already taking. when the bndd and medical board discovered the lapse, he was arrested, taken to jail and charged with a felony. his picture and the charges against him made the front page of the local newspaper which made him feel deeply ashamed. the charges were eventually pleaded down to a misdemeanor but, rather than revoking only his privilege to prescribe controlled substances and assigning another physician to supervise him, the board suspended his medical license altogether. at the same time, using the threat of permanently revoking his license, the board pressured him to sign a three-year treatment and monitoring contract that was later extended to five years after he had a brief relapse with sedative use. he described the contract as a full-time job in itself, one that he had to pay for out-of-pocket even though he no longer had an income. he had to see both a psychiatrist and a substance abuse specialist once a month, take random urine drug tests several times per month and attend support meetings three times a week. he also had to comply with all the requirements for keeping his medical license in otherwise good standing, including membership in the missouri medical association and participation in continuing medical education and recertification exams. these requirements cost him about $1200 per month. dr. wilkie recalled that all the substance abuse specialist did was talk about tiger woods and all the psychiatrist did was keep scheduling return visits. i was just easy money, he remarked with some bitterness. his treating physicians were driving expensive new vehicles while he had only a beater car that kept getting more beaten up with the passage of time. his world shrank as he gave up, one after another, simple pleasures like visiting family in canada, dining out, and enjoying fellowship with fellow parishioners. his wife had to work up to sixty hours a week just to keep the lights on; their marriage was buckling under the strain. the undertow of loss and sorrow and self-deprecation became so strong that wilkie feared he would drown in his grief. every day he prayed to god for the strength to persist but he was becoming exhausted from the effort. as time passed, dr. wilkie’s financial situation became increasingly dire. eventually, no longer able to pay for gas and automobile insurance, he sold his car and rode a bus to his appointments. hemorrhaging money month after month trying to comply with his php’s demands, he eventually funneled all the equity in his home and retirement account into his ongoing expenses. in 2014, the well ran dry. wilkie had worked for more than thirty years in a profession that should have allowed him to live comfortably into old age. but now, six years after asking his php for help, he was destitute. living in a recreational vehicle that lacked indoor plumbing, he and his wife were forced to use a chemical latrine in their backyard and shower at a local community center. by that time, he had no internet, no income other than canadian social security and no means to pay for his tests and appointments. but he still had a year left on his contract with php before his license could be reinstated; he was drowning in an ocean of impossible demands. in a final effort to restore his license and livelihood, early in 2015, dr. wilkie requested a hearing with the board to appeal his license suspension. he worked for days on a dossier that included his resume, explanations and apologies for his mistakes, and statements from his current physicians asserting that he was fit to practice medicine. on the day of his hearing, wilke managed to summon up the courage to enter the courtroom even though he could not afford an attorney. he handed his dossier to the chairman of the board of medicine who also was the judge. facing the chairman and the rest of the board, who served as the jury, as well as the board’s seasoned lawyer, he pleaded his case. he told the board that he had done his best to comply with its orders but, because his license was suspended, he could not generate any income and was now destitute. could the board forgive the final year of his contract? could they set up a fund for impoverished doctors like him to pay for their tests and appointments? could they somehow find it in their hearts to forgive his past mistakes and give him another chance? he added that, as a trained and experienced practitioner in acupuncture, as well as deep relaxation and inner healing techniques, he could be of great benefit to patients with just an active medical license. he would not need a bndd license. the board chair skimmed through wilkie’s dossier, but none of the jury members looked at it. they did not [qualitative research in medicine & healthcare 2019; 3:8647] [page 137] special issue on physician mental health no nco mm er cia l u se on ly take long to make up their minds to suspend his license with no pathway for redemption. dr. wilkie had indeed made mistakes. nothing immoral, nothing criminal, and nothing that put patients in harm’s way, but he did make mistakes. his bndd registration lapsed during his confinement and he continued to prescribe narcotics to his colleague’s patients for another two months. he had intermittently treated himself with anti-anxiety medications when his agitation became more than he could bear. but his biggest mistake was trusting his php to help him. had he been forewarned about the system’s malevolence, had he gotten a lawyer early on and had he avoided the php, his career might not have been washed out to sea like a pile of wayward driftwood. intrigued by dr. wilkie’s televised interview in 2019, i arranged to speak with him over the phone. i listened intently as he quietly described his devotion to the practice of medicine, to his family and to god. about growing up in canada and his lifelong love of ice hockey. the years’ long fight with mental illness. the toll the php’s mandates took on his marriage. his struggle with suicidal thoughts as his life circled the drain after his license was suspended. his religious faith that kept him from taking his own life. long after his license was suspended, wilkie finally found a psychiatrist who diagnosed him with bipolar illness and attention deficit disorder. with the right medications, he had more energy and optimism than he had had in years and no longer suffered from the bouts of anxiety and agitation that, in the past, compelled him to use prescription sedatives. if only he could put his renewed vigor into patient care, he mused, he would truly be a happy man. towards the end of our interview, i asked dr. wilkie if he wanted me to communicate anything specific to his colleagues. in spite of the embarrassment and criticism he might face, he asked me to warn his colleagues about this punitive process that had done nothing but drive him into poverty and despair. if i’d only known…i have nothing to lose now. so, yes, tell them who i am; tell them what happened to me; tell them what could happen to them. and please tell them to get a lawyer. physicians shouldn’t lose their careers simply because they’ve run out of money, he added emphatically. dr. wilkie was not alone in his plight. in the three years since i’ve been researching the issue, i’ve come across dozens of physicians and other health care providers who have been similarly mistreated and misdiagnosed by their phps and medical boards. physicians with only minor or past substance use problems who are diagnosed with addiction. physicians who merely had a drink or two after work who are diagnosed with alcoholism. physicians with mental health problems who were diagnosed with substance abuse instead. in almost every case, these physicians were remanded to ninety days of confinement in a drug rehab facility followed by three to five years of expensive and unnecessary treatment just to continue practicing medicine. regardless of the outcome, the process always left emotional, financial and reputational scars. yet there was something special about this man. he lost almost everything: his home, his medical license, his retirement funds. but there was one thing he did not lose. dr. robert wilkie was a man of god and he never lost his faith. references 1. randhawa pj. doctor left destitute after seeking help from a php. ksdk 5 on your side. televised 21 may 2019. available from: https://www.youtube.com/watch?v=o9dbegazgym [page 138] [qualitative research in medicine & healthcare 2019; 3:8647] case report no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2019; 3:7832] [page 25] introduction weight-related stigma the public perception of individuals of higher weights is affected by media that propagate weight stigma.1 weight discrimination in society often goes unchecked, and people of higher weight are subject to social blame based on common assumptions of laziness, overeating and oversimplifications of health status.1,2 the relationship between weight and health is often oversimplified and sensationalized.3 rural, low-income women of higher weights occupy multiple disadvantaged social locations that may influence their health.4 as these women may already be marginalized by sexism or classism, the added burden of weight-related stigma may exacerbate ongoing health issues and produce a multiply disadvantaged social status.5 individuals experience multiple, intersecting social locations at any one time that may accord them different disadvantages and advantages in particular contexts. in one of only few studies that examined weight from this intersectional perspective, himmelstein et al. found that low income individuals experience more weight-related stigmatization.5 rural residents also must cope with added stereotyping of backwardness and unsophistication.6 despite established research highlighting the disproportionate disparities rural individuals face,7 women and weight-related stigma in rural and lowincome environments are not studied often, in part, perhaps because these women are perceived as being less concerned with their bodies.8 women experience harsher weight stigma in a variety of settings, and weight stigma in women is experienced at a lower weight compared to men.1 evidence of stigma and its impact on psychological and behavioral responses should be viewed as a vital determinant of health that greatly influences health and health inequalities.9 weight-related stigma and healthcare weight-related stigma and stereotypes are widespread across society, including among healthcare professionals.2,10 mounting evidence indicates that weight-related stereotypes negatively influence the quality of care higher weight individuals receive, worsening disparities and barriers to experiences of weight-related stigma among low-income rural women of higher weights from the midwestern united states katherine hughes,1 andrea e. bombak,2 samuel ankomah1 1school of health sciences, central michigan university, mount pleasant, mi, usa; 2department of sociology, university of new brunswick, nb, canada abstract weight-related stigma and stereotypes are widespread. despite established research highlighting the disproportionate disparities rural individuals face, studies focusing on women in rural and low-income environments are underrepresented in the literature. the current study addressed these gaps in the literature using 25 in-depth interviews, which were analyzed using interpretive phenomenological procedures. the research questions were: i) what are low income rural women of higher weights’ understandings and experiences of weight stigma in healthcare? and ii) to what extent do their experiences of stigma affect or do not affect their healthcare-related behaviors? sixteen women in the study experienced weight-related stigma in healthcare. many delayed their care while others felt their care was essentially denied. findings indicate that more can be done to address weight-related stigma. correspondence: katherine hughes, school of health sciences, central michigan university, mount pleasant, mi 48859, usa. tel.: +1.517.902.6262. e-mail: hughe1kl@cmich.edu acknowledgments: the authors thank participants and community partnerships for recruitment opportunities. key words: weight; stigma; low-income; rural; women. contributions: kh, ab completed research interviews; kh, sa data coding, worked with ab on data analysis. kh manuscript completion in consultation with ab. conflict of interest: the authors declare no potential conflict of interest. funding: the work was supported by a college of health professions early career grant, central michigan university. received for publication: 17 september 2018. revision received: 18 february 2019. accepted for publication: 18 february 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright k. hughes et al., 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:25-31 doi:10.4081/qrmh.2019.7832 qualitative research in medicine & healthcare 2019; volume 3:25-31 no nco mm er cia l u se on ly care.2 consequences of weight stigma include avoidance of medical care, poorer quality of care, medication non-adherence, disordered eating, reduced weight loss, inactivity, psychosocial stress, provider distrust, and poorer mental health.2,10 in their review on the effects of weight stigma on health, phelan et al.2 reviewed numerous studies that indicate that those who experience weight-related stereotyping in healthcare settings delay care and avoid providers due to the stress caused by their negative treatment. in a review of reports on weight-related stigma, flint11 suggests that the breakdown of the patient-practitioner relationship, which can involve the use of alarmist terms to describe excess fatness, has contributed to patients avoiding and even cancelling appointments. in a study that helps elucidate why women of higher weights are less likely to seek care than thinner counterparts, mensinger et al.12 found that women of higher weight experience internalized weight-related stigma that contributes to body guilt and shame. this guilt and shame leads to increased healthcare-related stress causing healthcare avoidance. the evidence that individuals of higher weight may fail to report health concerns and delay/avoid needed healthcare emphasizes the paramount importance of understanding the experiences of stigma in those disproportionately affected by additional barriers and disadvantages,4 which has not been a focus of weight-stigma research. despite the potentially highly salient effect of weight-related stigma, we know little about these factors in low-income and rural locales whose residents may experience compounding disparities and barriers to receiving healthcare. the inadvertent or deliberate stigmatization of women of higher weights and the barriers it creates should be explored in order to better understand how to promote health at every size. the current exploratory study helps to elucidate the role of weight stigma in terms of healthcare behaviors and beliefs of rural women of higher weights. research objective in the current study, we seek to address the abovementioned gaps in the literature using 25 in-depth interviews, conducted in the rural midwest of the united states of america, and analyzed using interpretive phenomenological analysis. we address the following questions: i) what are low income rural women of higher weights’ understandings and experiences of weight stigma in healthcare? and ii) to what extent do their experiences of stigma affect or do not affect their healthcare-related behaviors? materials and methods study design this study employed in-depth interviewing and interpretive phenomenological analysis (ipa) practices. ipa equips researchers with the skills necessary to understand the experiences of individuals by capturing their narratives and providing transparent, comprehensive, and organized interpretations or sense making.13,14 just as individuals are conducting sense making of their own lived experiences, ipa requires the researcher to make sense of the participant’s experience. this two-way relationship is the process of a double hermeneutic, enabling interpretations to be made by the researcher based on participants’ narratives related to the phenomenon of interest. analysis in ipa is based on ideography; the event of interest in each individual case is identified and all interviews are examined to identify patterns, themes, and divergence across all individuals.13,14 ipa is not a prescriptive approach – it provides freedom and flexibility, but it also requires crosschecking at multiple points during data collection and analysis.15 given that ipa focuses on participants’ lived experience and sensemaking practices, it provides an appropriate means to understand how individuals make sense of their weight stigma experiences.16 participant selection we recruited individuals from flyers, listservs, and snowballing at community groups and sites serving lowincome families (food pantries, clinics, college campus, and community centers). the inclusion criteria for this study included self-identifying as female, currently or have ever been considered obese (body mass index≥30), less than twice the poverty guidelines set forth by the department of health and human service or enrolled in an income-based social assistance program, and living in a rural michigan area defined by the us census bureau urban-rural classification system. we excluded individuals from the study if they were non-english speaking. individuals interested in participating were contacted via email or phone to schedule an interview. we recruited twenty-five participants, which is considered the upper limit for phenomenological studies.17 participants were given $50 to reimburse their time and travel. setting data collection was conducted at public places of the participants’ choosing. the majority of interviews took place at mcdonalds fast food locations, as that is one of few public meeting places in rural areas that is accessible and convenient. a total of 25 women (age: 22-90, m=40.5, sd=19.87) participated. participants self-identified as white (83.33%), black (8.33%), latin american (4.17%), and american indian (4.17%). most of the participants had completed secondary school (20.83%) or some university (20.83%). most of the participants were not working in the labor force (a caregiver who does not work by preference/on leave/unemployed) (45.83%) or were retired (25%). data collection data was collected during face-to-face interviews, using semi-structured interview guides (table 1). smith [page 26] [qualitative research in medicine & healthcare 2019; 3:7832] article no nco mm er cia l u se on ly and osborn suggest the utilization of semi-structured interviews in ipa to allow flexibility in obtaining participants’ unique stories and for rapport building.16 we audio-recorded interviews, which were then transcribed by a third party. we recorded fieldnotes after each interview to depict the interactions during the interview, to elaborate on emotions expressed, and to capture visual or verbal cues that were not captured by the recording.18 on average, interviews lasted 46 minutes, ranging from 2084 minutes (median: 42 minutes, mode: 60 minutes). kh was the interviewer and was trained by ab, who has extensive experience conducting qualitative interviews. kh had previous contact with some participants through recruitment at a community food distribution site. data analysis prior to the first interview, ab deductively began developing the initial code list by mapping the field19 and considering relevant prior studies and theory that may prove pertinent to the present study. the first interviews then informed the code list; new fields were added from relevant themes arising in the interviews. all three authors were responsible for coding the interviews using nvivo 11 software; coders met weekly to discuss patterns and allow for investigator triangulation. coding was done using a stepwise approach, informed by ipa procedures.16 each line of the interviews was read and re-read to identify words or phrases that match with the field; text that converged and diverged from the existing code were included. each interview was summarized by the interview’s initial coder and a subsequent coder. separate codes were then combined to identify patterns with similar meaning; these patterns in meaning were identified as emergent themes. we then looked at all across interviews using coding tables as a way of detecting patterns among participants. we used these coding tables to reaffirm and refine the themes that emerged and to detect patterns within emergent themes. results below, we examine the two main themes we identified by using quotations from our interviews with participants. their experiences with weight-related stigma will be described first and then, we will move to analyze how participants were affected by weight-related stigma in a healthcare setting. the subheadings represent sub-themes within each of the three main themes; quotes that support each category and exceptional disconfirming quotes will be included. weight-centrism in healthcare sixteen participants described feelings of judgment or assumptions by healthcare professionals (mostly physicians) that were solely related to weight. most participants felt physicians made judgments about their health without taking into consideration context, background, or their personal history. one participant mentioned that she believes physicians are unequipped and ill trained to work with patients of higher weights. this notion was shared by participants who describe nurses speaking about patients of higher weights in a demeaning way and physicians who give recommendations that the women in this study felt were unachievable given the presence of a conflicting injury or illness. the sense that physicians reduce complicated lifeways is described by naomi: dealing with medicine…the doctor looks at you and already they can tell that they’ve analyzed you…by seeing…one thing and that’s not always the case. the situation that naomi described was a very common occurrence for the women in this study. for example, taylor shared a similar experience of assumptions based only on weight by healthcare professionals. taylor who has chronic health issues and sports-related injuries describes her experiences in healthcare: i have a really [bad] knee from playing softball in high school, and they automatically say that it’s just because of your weight. or…i have a pinched nerve in my back from work, and it’s like, “well, you need to lose weight.” which, i’ve done…and those problems don’t go away with losing weight…they’re a chronic issue…they just automatically assume everything wrong with you is because of your weight. participants also described hearing statements made by physicians that led them to believe they were being [qualitative research in medicine & healthcare 2019; 3:7832] [page 27] article table 1. sample of semi-structured interview guide. question 1 how do you think society treats women of higher weights? in what ways do you think society has or has not treated you differently due to your size? question 2 how do you think healthcare providers treat women of higher weights? how do you think those experiences are related (or not related) to your size? question 3 how do you think those experiences of being judged (or not judged) for size has affected women’s health? lifestyle? willingness to go to the doctor? how do you think experiences of being judged (or not judged) for size has affected your health? lifestyle? willingness to see healthcare providers? no nco mm er cia l u se on ly judged because of their weight. statements made by physicians to the participants concerning their weight followed the same general pattern. for example, contessa shared a statement made to her by a physician that encompasses what many of the participants expressed: [we] wouldn’t have to be seeing you for this issue if you’d lose some weight...we wouldn’t have to do this test, ya know. wouldn’t cost as much for your medical care if you could just lose some pounds. weight-centrism present in the physician-patient relationship was described by many women. while variations in its manifestation were present, it can be summarized as physicians indiscriminately attributing all their health conditions or illnesses only to their current weight. weight-centrism may have seemed especially egregious for women in this study who were living in relatively isolated locales on limited budgets. these individuals were already coping with barriers to healthfulness and class-based stereotypes. as described by lucy: i’m retired and older and having to live on a fixed income…if you use a bridge card people [act] like it’s coming out of their pocket…i can’t afford to buy food, but the government’s helping me pay for it so people think, well, i pay taxes so into government programs, you know, so it’s coming out of my pocket. why are you so fat and why are you so lazy… therefore, in addition to reinforcing simplistic conflations of health and weight status, weight-centrism dismissed the health-damaging inequities participants encountered in their everyday lives. effects of weight-related stigma every participant mentioned the effects of weight-related stigma that they had experienced. most expressed that the situation elicited an emotional response (e.g. cut down, depressed, hopeless, confused, and angry); with respect to experiences in healthcare, some went further, describing consequent feelings of evasiveness toward seeking care (avoidance of care), and/or feeling like they were denied care to which they were entitled (denial of care). avoidance of care participants described a variety of situations that would cause them to avoid healthcare. for some participants, avoidance was due to the seeming futility of speaking to physicians. naomi describes her reaction to the way she is treated in healthcare: they’re going to say, if you’re overweight, “you’re overweight, you need to lose weight”...it kind of hurts hearing that over and over and over again to the point where you get discouraged to go to the doctor anymore. for participants like naomi, a visit to the physician was unnecessary. the outcome of the visit was a foregone conclusion (being told to lose weight) and would simply produce emotional hurt. taylor similarly describes one of her experiences during pregnancy that led her to cease care unless she was very sick: then going to the ob when you’re heavy versus if you’re not heavy, there’s…a huge difference. they…automatically assume you eat trash all day, or you’re already gonna have gestational diabetes, or your baby’s gonna be huge and they just wanna automatically schedule you for a c-section (laughs)... having their lives reduced to weight-based stereotypes and encountering persistent negativity concerning their size motivated some women to forgo medical treatment. importantly, knowledge, which was used to counter-productively reinforce to taylor the risks associated with her pregnancy, was viewed as insufficient preparation for physicians in treating those with higher weight. as emphasized by mia in explaining why she delays healthcare treatment: i think healthcare professionals get to a point where they see their daily routine as a job…if the healthcare workers aren’t overweight, they still have the same attitudes that people on the street have. just because you have a degree in medicine doesn’t make you any nicer. while some participants delayed or avoided care because they expected to encounter weight-centric treatment, others described more material reasons for avoiding care. bette, who has had both positive and negative experiences with physicians, explains what makes her unwilling to go see a physician: mainly just the…cost…i do have medicare…but the copays are still high…medicare is like over a hundreddollars a month...that they take out of my…disability… thus, participants experienced multiple barriers to seeking respectful, effective healthcare. for some, given the likelihood of encountering reductionist commentary on their size, the outcome of compounding material and social inequities was to avoid healthcare. denial of care other participants described what can be interpreted as a form of denial of care. this manifested most often because of weightcentrist ideals held by physicians preventing any course of action being taken during the appointment. participants were persistently told to lose weight, eat healthy, and exercise leaving them feeling like the condition or illness for which they sought medical care for was not being addressed. for example, jen (whose husband had only one episode of high blood sugar and eats a healthy diet) summarized her frustration with healthcare professionals: they just like, “oh, you have type 2 diabetes.” it’s just their go-to. they don’t wanna look…intensively…they don’t wanna look into what’s actually causing that. because of the frequent elision of higher weight status with diabetes, jen’s husband was essentially denied care for his true issue. rogue had a similar experience with a physician saying: i went to see a doctor about potentially rheumatoid [page 28] [qualitative research in medicine & healthcare 2019; 3:7832] article no nco mm er cia l u se on ly arthritis...this gentleman…never saw me before, and he saw me for less than 10 minutes, i timed it. and he had just looked at my hands and said, “this isn’t inflammation, it’s just because you’re overweight.” and walked out the door …i think it’s easier for health professionals to call me out on not exercising as much, or that’s where they go straight to. i mean they’re not entirely wrong, but i wonder if it’s just because of the way i look that they, they go quickly to that. rogue, again, felt that her actual concern (rheumatoid arthritis) were easy to dismiss for physicians because of assumptions linked to higher weight status. some participants recounted experiences of family members and friends that influenced their own healthseeking behavior. abbie describes the experience her father had with healthcare professionals in trying to address high blood sugar levels. the problem persisted despite her father following medical advice: my father just died...he said, “i will not go to the healthcare system because…they told him the same thing, lose weight. your sugar’s not gonna come down until you lose weight.” well, he lost weight, sugar was still acting up…it kind of has affected me as far as like healthcare because it makes me not even want to go to the doctor…i just want to be healthier, you know, but you’re not giving me advice really, you’re just telling me what i already know. abbie mirrors what many of the participants expressed, seeking care becomes a chore where many felt they needed to defend themselves, speak up, or fight to be believed when wanting to address their concerns pertaining to health and their bodies. even when they advocated for themselves during appointments they felt their summons for help went unanswered. as tamara states: they treat me like i’m no good, you know…to set you aside and just blow you off instead of helping when you ask for help. thus, when participants did seek out care (which might involve considerable effort and resources), they were likely to encounter reductionist solutions based on assumptions concerning the link between health and weight. this denial of the care they actually sought could produce an unwillingness to engage further with healthcare providers. discussion low income, rural women of higher weight experience weight-related stigma. research suggests that stigma may affect quality of care and health-seeking behaviors. the current study adds to the body of literature regarding experiences of weight-related stigma, providing insights from low-income rural women of higher weights who are sometimes perceived as indifferent to societal body standards.8 while there are few studies that examine stigma, well-being, and health-seeking behaviors among low-income and rural women, each theme can be compared with similar studies. women who reported experiencing stigma in himmelstein et al.’s4 survey had higher bmi’s and a lower average income than those who did not report experiencing stigma. most participants mentioned stigmatizing interactions with their physicians. weight-related stereotypes held by physicians have been abundantly measured and affirmed. comparable to the studies reviewed by phelan et al.,2 participants in this study described feeling like they received lower quality care due to their weight. a previous study done by bombak et al.20 found that women classified as overweight or obese felt their reproductive care needs were denied based on their weight. the women in the current study described similar refusal of needed care by healthcare professionals who held weight-centrist ideals. importantly, some participants stated they had neutral or positive interactions with healthcare professionals. all three participants who relayed positive experiences (characterized as timely and attentive) had the same family physicians since childhood. participants in the present study described similar reasoning leading to avoiding or delaying healthcare as identified by other researchers. these reasons included: not having a good rapport with healthcare staff and not receiving treatment on the basis of weight,11 a lack of communication and hurtful words to describe body fat,21 a perceived lack of resources, and prior negative experiences.22 the avoidance of care for women of higher weights due to stigmatizing experiences has been established; however, how these encounter constitute a form of implicit (or explicit) denial of care through the dismissal of patients’ concerns remains under-explored. this research adds to the literature tasked with understanding stigma of underrepresented groups, but it is critical that more research is conducted that will aid in countering the deeply held assumptions regarding individuals of higher weights. more research must also be conducted that considers intersectional forms of marginalization.4 participants in the present study were also coping with material and social disadvantage produced through living on lower incomes and in rural locations. discrimination based on socioeconomic status is present in healthcare contexts.23 rural spaces and lifestyles are depicted as backward and unsophisticated6,24 and class-based assumptions tend to dismiss material barriers to well-being as forms of ignorance.25 more research will not only guide more respectful medical messaging, but it may help develop messaging that improves patients’ self-image. strengths and limitations our findings help to articulate the experiences of those who frequently experience stigma and disadvantage and can be used to guide medical interactions and messaging that is more respectful for women at every size. for example, findings highlight potential disparaging messaging in healthcare and other sectors and should act as a catalyst to change the discourse surrounding the care of women [qualitative research in medicine & healthcare 2019; 3:7832] [page 29] article no nco mm er cia l u se on ly of higher weights. the avoidance and denial of care subthemes can help inform dialogue related to perceived care for low-income rural women of higher weights. to enhance rigor, we created audit trails in the form of nvivo memos and employed investigator triangulation throughout analysis.26-28 professional transcription and reflexive fieldnotes, including a final reflexive summary consulted after the interview, added to the rigor of the study.26,27 due to the nature of this study, the focus was on women, but the experiences of rural and low-income men would further add to the body of literature dealing with weight-related stigma. the sample was highly educated and mostly white. studies on weight bias in general should aim for greater diversity and considerations of intersectionality.4 the small scale, qualitative nature of the study prohibits generalization, but similar themes have been identified elsewhere, suggesting transferability of findings. kh, the main interviewer, is a slim female from a different class background, which may have affected rapport with participants. conclusions in this interpretive phenomenological exploration of low income, rural women’s experiences with weight stigma, all participants described experiencing some form of weight-related stigma. many had experiences that fell into all the categories explicated in the results section: weight-centric ideals from healthcare professionals, and more than half revealed that the stigmatization from healthcare professionals produced evasion from seeking care or feeling like they were denied care. weight-centrism during previous medical encounters contributed to the women in this study deciding that it was futile for someone with their body to seek care. as some of the women did not seek care until they were very ill or never sought care at all, this indicates weight stigma is a critical concern. action needs to be taken across sectors to reduce barriers to medical care for rural residents, low-income individuals, and women of higher weights. a weight-neutral approach should be adopted for health communication.29 this approach maintains a holistic approach to health; an endorsement of sound research and prevention; and advocates for improved access to healthcare, resources for health promotion, social justice and stigma reduction.29 such an approach would help alleviate the intersecting forms of disadvantages that kept participants marginalized within the healthcare system. given the effects of weight-centrism on participants’ health-seeking behaviors, public health policy and practice should promote non-stigmatizing messages that seek to promote healthy behavior without mention of body weight or size30 and that resist the common, damaging stereotyping of higher weight persons as ignorant, lazy, and over-indulgent,3,25 particularly among low-income, rural residents coping with similar classist assumptions.6,24 the findings from the current study point to the urgency of making public health messages more respectful by keeping weight out of health-related communications and pushing to eliminate intersections stigmas in every interaction and touch-point with the public. references 1. puhl r, heuer c. the stigma of obesity: a review and update. obesity 2009;17:941-64. 2. phelan s, burgess d, yeazel m, et al. impact of weight bias and stigma on quality of care and outcomes for patients with obesity. obes rev 2015;16:319-26. 3. gard m, wright j. the obesity epidemic: science, morality and ideology. abingdon, oxon: routledge; 2005. 4. himmelstein m, puhl r, quinn d. intersectionality: an understudied framework for addressing weight stigma. am j prev med 2017;53:421-31. 5. grollman e. multiple disadvantaged statuses and health: the role of multiple forms of discrimination. j health soc behav 2014;55:3-19. 6. beagan b, chapman g, johnston j, et al. acquired tastes: why families eat the way they do. vancouver: university of british columbia press; 2015. 7. meit m, knudson a, gilbert t, et al. the 2014 update of the rural-urban chartbook. 2014. available from: https://ruralhealth.und.edu/projects/health-reform-policy-research-center/pdf/2014-rural-urban-chartbook-update.pdf 8. bove cf, olson cm. obesity in low-income rural women: qualitative insights about physical activity and eating patterns. women health 2006;44:57-78. 9. hatzenbuehler m, phelan j, link b. stigma as a fundamental cause of population health inequalities. am j public health 2013;103:813-21. 10. himmelstein m, incollingo belsky a, tomiyama a. the weight of stigma: cortisol reactivity to manipulated weight stigma. obesity 2015;23:368-74. 11. flint sw. obesity stigma: prevalence and impact in healthcare. br j obes 2015;1:14-8. 12. mensinger j, tylka t, calamari m. mechanisms underlying weight status and healthcare avoidance in women: a study of weight stigma, body-related shame and guilt, and healthcare stress. body image 2018;25:139-47. 13. smith ja. beyond the divide between cognition and discourse: using interpretive phenomenological analysis in health psychology. psychol health 1996;11:261-71. 14. smith ja. evaluation the contribution of interpretive phenomenological analysis. health psychol rev 2011;5:9-27. 15. smith ja, flowers p, larkin m. interpretative phenomenological analysis : theory, method and research. london: sage publications ltd; 2009. 16. smith ja, osborn m. interpretative phenomenological analysis. in: smith ja, ed. qualitative psychology: a practical guide to research method. london: sage; 2008. pp 53-80. 17. creswell jw. qualitative inquiry and research design: choosing among five approaches. 2nd ed. thousand oaks, ca: sage publications; 2007. 18. emerson rm, fretz ri, shaw ll. writing ethnographic fieldnotes. chicago: university of chicago press; 2003. 19. wright j. poststructuralist methodologies the body, schooling and health. in: evans j, davies b, wright j, eds. [page 30] [qualitative research in medicine & healthcare 2019; 3:7832] article no nco mm er cia l u se on ly body knowledge and control. studies in the sociology of physical education and health. london, new york: routledge; 2003. pp 34-59. 20. bombak a, mcphail d, ward p. reproducing stigma: interpreting “overweight” and “obese” women’s experiences of weight-based discrimination in reproductive healthcare. soc sci med 2016;166:94-101. 21. dutton g, tan f, perri m, et al. what words should we use when discussing excess weight? j am board fam med 2010;23:606-13. 22. brown i, thompson j, tod a, jones g. primary care support for tackling obesity: a qualitative study of the perceptions of obese patients. br j gen pract 2006;56:666-72. 23. zilioli s, imami l, ong ad, et al. discrimination and anger control as pathways linking socioeconomic disadvantage to allostatic load in midlife. j psychosom res 2017;103:83-90. 24. mcphail d, chapman ge, beagan bl. the rural and the rotund? a critical interpretation of food deserts and rural adolescent obesity in the canadian context. health place 2013;22:132-9. 25. farrell lc, warin mj, moore vm, street jm. socio-economic divergence in public opinions about preventive obesity regulations: is the purpose to ‘make some things cheaper, more affordable’ or to ‘help them get over their own ignorance’? soc sci med 2016;154:1-8. 26. attride-stirling j. thematic networks: an analytic tool for qualitative research. qual res 2001;1:385-405. 27. creswell jw. research design: qualitative, quantitative, and mixed methods approaches. 4th ed. thousand oaks, ca: sage publications; 2009. 28. kaczynski j, salmona m, smith t. qualitative research in finance. aust j manag 2013;39:127-35. 29. tylka t, annunziato r, burgard d, et al. the weight-inclusive versus weight-normative approach to health: evaluating the evidence for prioritizing well-being over weight loss. j obes 2014;2014:1-18. 30. puhl r, peterson j, luedicke j. fighting obesity or obese persons? public perceptions of obesity-related health messages. int j obes 2012;37:774-82. [qualitative research in medicine & healthcare 2019; 3:7832] [page 31] article no nco mm er cia l u se on ly layout 1 introduction patient care quality and communication are central elements for nurses helping patients recover optimal health and quality of life. nurses often coordinate and engage in patient care in multidisciplinary health care teams, including doctors, therapists, medical practitioners, medical consultants, and dietitians. yet, while interest in nurses’ workflows and procedures within these multidisciplinary teams has grown, little process has been made using mobile ethnography to methodologically improve insights into perceptions, culture, and practices within very specific workflow contexts. the research question within this study is as follows: what are the advantages and challenges of using mobile ethnography in a hospital case study, where the case study aim is to identify perceptions and practices for improved workflows and procedures? the descriptive case study a case study is an empirical inquiry that investigates a contemporary phenomenon in depth within its real-life context.1 we have used this descriptive case study1 to describe a phenomenon in context, including rich descriptions of the context and case and detailed information on the methodological framework. within this framework, contextual factors are dynamic constructs that surround nurses workflows, taking both time and space into account.2-29 in this section, we introduce the context and case, and in the following sections, we focus mainly on the methodological ethnographic framework. our descriptive case study took place at the national spinal injuries centre, stoke mandeville hospital in great britain. the aim of the case study was to identify perceptions and practices for improved workflows and procedures within nurses’ use and introduction of self-catheterization at the national spinal injuries centre. it is reported that self-catheterization has a positive impact on patients’ quality of life, including reduced mortality and advantages and challenges of using mobile ethnography in a hospital case study: whatsapp as a method to identify perceptions and practices thomas bjørner,1 morten schrøder2 1department of architecture, design and media technology, aalborg university, copenhagen; 2wilke, copenhagen, denmark abstract the focus of this article is to provide the reader with reflexivity and a framework for using mobile ethnography. based on a case study with an ethnographic approach (including mobile ethnography using whatsapp), we identified perceptions and practices for improved workflows and procedures related to nurses’ introduction and implementation of self-catheterization at the national spinal injuries centre in great britain. we offer detailed procedures, advantages, and challenges in using mobile ethnography. the ethnographic approach consisted of four phases, including initial workshops, go-along observations, interviews, and a mobile ethnographic approach using whatsapp as a mobile diary for six nurses. within the case study, three major themes were revealed by the ethnographic approach, with the conclusion that nurses have positive attitudes towards self-catheterization, but these nurses are becoming less influential and the practices around this technique are consequently disappearing. the main result is that use of whatsapp as a self-tracking tool can extend the methodological toolbox, but reflexivity and preliminary work are required to make the practice beneficial. correspondence: thomas bjørner, department of architecture, design and media technology, aalborg university, a. c. meyersvænge 15, 2450 copenhagen sv, denmark. tel.: +45.61144601. e-mail: tbj@create.aau.dk key words: mobile ethnography; interviews; whatsapp; workflows. acknowledgements: acknowledgement to rie lykke danielsen, perspectives consultant, lead ethnographer, wilke, overgaden neden vandet 9c, 1414 copenhagen k. contributions: tbj wrote the manuscript and was responsible for the overall theoretical framework and the academic validity. ms was the case study project leader and was responsible for permissions, stakeholder communication, the overall study design, data collection, and analysis. tbj and ms revised the manuscript critically for important intellectual content. conflict of interest: the authors report grants from brandbase, denmark, and grants from coloplast, during the conduct of the study. funding: this work was supported by the project qual roadmap, brandbase, denmark. received for publication: 30 august 2018. revision received: 11 june 2019. accepted for publication: 11 june 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:58-67 doi:10.4081/qrmh.2019.7795 [page 58] [qualitative research in medicine & healthcare 2019; 3:7795] qualitative research in medicine & healthcare 2019; volume 3:58-67 no nco mm er cia l u se on ly morbidity, improved urinary symptoms, reduced incontinence, fewer infections and complications, better sleep, increased independence and self-confidence, and maintaining a normal sex life.2,3 however, rates of selfcatheterization (10%) at the national spinal injuries centre are significantly lower than the target of england’s national health service, which is 80%. the case study used an ethnographic approach to understand the reasons behind this relatively low rate of self-catheterization use and to determine meaningful ways of substantially increasing these rates (up to 50%) in bladder management. the national spinal injuries centre has established an international reputation for quality services, including international accreditation for excellence in the care of adults and children with spinal cord injuries. the unit offers diagnosis, treatment, follow-up, and rehabilitation for patients with acute spinal cord injuries and non-traumatic spinal cord lesions of acute onset. patients are referred to this unit from all over the united kingdom and from many countries around the world. most patients are admitted to the spinal unit due to traumatic injuries, typically via the hospital’s accident and emergency unit or from another hospital. due to their spinal injuries, these patients often have bladderemptying problems; for many, self-catheterization can be a safe and effective way of managing these problems. other authors have stated that having patients use selfcatheterization (and preventing self-catheterization complications) requires education and training, patient compliance, and suitable catheter material.2-4 on the other hand, a lack of time for nurses is a well-known barrier to proper patient education and training. in a previous survey, 70% of nurses stated that they had 45 min or less to teach patients self-catheterization,5 which many stated was inadequate to train their patients properly. previous literature7-9,28 has outlined how mobile ethnography can be used to identify perceptions and practices, which has mainly been used for mobility and tourism research; mobile ethnography for improved workflows and procedures in health care has been insufficiently researched. mobile ethnography in health care mobile ethnography emerged in the late 1990s as a method to track strategies for complex studies.6 scholars have agreed that mobile ethnography emphasizes movement, but they have used and defined this concept differently, with various opinions on what should be at the center of the analysis. in this article, we are in line with other scholars’ definitions; mobile ethnography should be understood as ethnography using a mobile device.7 as hein et al.8 suggested, mobile devices can act as extensions of ethnographers and allow them to record observations, co-create data, and share experiences with participants. however, it is very important to think about not only how mobile devices can be applied but how they can be used to solve specific research questions and how they fit into the wider context of a health care study, including the ontological and epistemological implications of using mobile technology. within the case study, the aim was to identify perceptions and practices for improved workflows and procedures within nurses’ introduction and use of self-catheterization in a hospital context. perceptions are complex constructs, so they cannot be measured directly (e.g., as quantitative workflows); rather, one must rely on inference. in this study, perceptions are understood as being composed of affective (feelings), cognitive (beliefs), and behavioral (actual) actions, similar to how spooncer defined attitudes.10 practices are understood as being micro perspectives,11,12 which can be used to explain the complex relationships between nurses’ actions (including what they say and do) and the system (including space, culture, organization, and norms) within a workday context. previous literature demonstrates that ethnography has been used to examine general perceptions and practices6,12,23 as well as applied nursing perceptions and practices.13,14 scholars have focused on how to approach hospitalized patients’ perceptions and various new applications of digital technologies that facilitate these perceptions.15-19 however, nurses and other health care staff members increasingly must provide feedback about their health care experiences to improve patient care quality.15,20 a common focus is on workflows; this underlines an understanding that operational efficiency can be quantitatively evaluated using flow with linked elements of, for example, travel distances, interruptions, and time.18,21,22 however, when exploring dynamic nursing activities, the tasks performed within quantitative workflows might not provide a comprehensive picture, and further supplementary methods are needed to support in-depth insights and strengthen applied implementations.18 at the same time, a more triangulated qualitative approach to workflows is rather complex. health care staff members often find it difficult to provide this feedback because it can be difficult to identify one’s workflows and because descriptions are often based on selective memory experiences.20 mobile ethnography, instead, can collect data in nondigital unbounded environments, with the benefit of collecting the data in an unobtrusive way on-site and at the time of specific activities of research interest. to be more specific, mobile ethnography can be implemented as a methodological tool for examining what and how humans do things in context. several scholars emphasized the importance of triangulation as a way to improve qualitative validity.9,24,30-33 one of the common critiques of interviews is that they place too much focus on what the participants say they do – not what they actually say and do. this is partly because there can be significant differences between what participants do in practice and what they say they do in interviews and partly because most everyday practices are unintentional and habitual. [qualitative research in medicine & healthcare 2019; 3:7795] [page 59] article no nco mm er cia l u se on ly materials and methods participants and sampling we recruited six nurses and four patients from the national spinal injuries centre, stoke mandeville hospital via purposive sampling. we collected the data over a period of 2 months. for inclusion, the nurses had to serve in different wards, have different competencies, and treat patients at various stages of the rehabilitation process. we excluded non-english-speaking nurses and those with low seniority. for inclusion, the patients had to be hospitalized and able to participate in an interview, meaning that they were not too vulnerable. procedure this study was field-based and used an ethnographic approach inspired by the frameworks of pink12,23 and atkinson and hammersley.24 the ethnographic approach has the advantages of focusing systematically on specific contexts (in this case, the context of self-catheterization treatment) and strengthening the subsequent analysis through the use of various sources of data. this study consisted of four phases (figure 1), including some methods for implementing triangulation in the ethnographic approach.24,25,29 phase 1 we arranged a kickoff workshop at the national spinal injuries centre to meet the management and staff and agree on the setup. we then initiated recruitment and the planning of the subsequent phases. phase 2 we arranged go-along observations30 to follow six nurses during their shifts, particularly to observe the selfcatheterization context and practices; we also intended to specify and phrase the questions in phase 3. researchers followed individual nurses on their shifts, asked questions, listened, and observed to explore the nurses’ duties, perceptions, and practices regarding self-catheterization. after the go-along observations, we interviewed the six nurses following a semi-structured interview guide.9 we specified in the interview guide that the interviewer should use information from the go-along observations to enhance the questions. the interviews lasted between 45 and 90 minutes. further, we interviewed four patients to [page 60] [qualitative research in medicine & healthcare 2019; 3:7795] article figure 1. a study flow with 4 phases. no nco mm er cia l u se on ly provide a broader picture and more detailed information from the patients’ point of view. the interviews lasted approximately 60 minutes and used storytelling as the main interview technique.9 phase 3 we acquired 5 days of mobile diary data from six nurses using whatsapp, which included a challenge of the day and a task of the day. we based the questions and tasks on the results from the previous phases. detailed information about the procedure within this phase is outlined in the subsection titled whatsapp for data collection and self-tracking. phase 4 we reported recommendations for stoke mandeville hospital and organized a workshop to discuss the findings related to self-catheterization and how to develop and implement ideas. whatsapp for data collection and self-tracking for phase 3 (figure 1), we used whatsapp to facilitate data collection and provide the mobile diary. researchers have previously used whatsapp in health care studies,26,27 but few have used it in classic diary studies of nursing practices. before choosing whatsapp as the specific tool for our study, we considered various ethnographic mobile opportunities, including the ethos, over the shoulder, indeemo, and mindwarms apps. however, the main advantage of whatsapp was that the included participants were already familiar with using it. it would have been time consuming for the participants to establish knowledge and skills using a new app, and this study was slated for a relatively short period of time among a very busy staff. additionally, whatsapp is a freeware app that performs fast two-way communication and uses end-to-end encryption technology, which allows for data between communicating parties to be secure.31 furthermore, whatsapp can be used on multiple platforms. whatsapp can be used similarly to a classic diary, but it has added support because it is used on a smartphone. six nurses documented their mobile experiences in situ using whatsapp. in this method, also labeled self-tracking,17 nurses act as researchers and report their experiences using their smartphones. following the whatsapp posts, we could reconstruct the nurses’ accounts of care through the stages of the self-catheterization process. prior to beginning their mobile diaries, the nurses read our instructions. they all used their own mobile phones and were familiar with whatsapp. each day, they received a specific task and accompanying questions, listed below in a condensed format. day 1 please photographically document the self-catheterization training facilities (location), self-catheterization training equipment (catheters and other relevant items), and written self-catheterization information (leaflets or other relevant documents, including illustrations), as well as the individual timetables at the patients’ beds (e.g., 35 examples; patients’ identities can be left out). capture examples of delays in relation to bladder management and self-catheterization specifically. day 2 in phase 2 (figure 1), we learned that there is a challenge related to definitive self-catheterization dismissal in the early stages of the patient journey (acute and early rehabilitation). what are your thoughts on this? what could counteract the described self-catheterization barrier? please take some time to discuss self-catheterization with your colleagues and collect their perceptions; summarize their responses here. if you and your colleagues are comfortable with it, please audio or video record your conversations with your phones and upload the recordings to the app. day 3 in phase 2 (figure 1), we learned that there are challenges related to the limited number of self-catheterization ambassadors. what are your thought on this? how can the concept of dedicated self-catheterization ambassadors be strengthened? what should be prioritized in the short and long run? please illustrate the typical patient journey, including the courses of treatment related to bladder management. use as much detail as you can; then photograph this chart and upload it to the app. day 4 in the previous research phase, we learned that there is a challenge related to patient pushback when considering or actively switching to self-catheterization and that at least some nurses (particularly less experienced ones) find it hard to challenge patients’ views when they do not coincide with their own. what are your thoughts on the above? what are the main reasons for this patient pushback, and how can it be better counteracted in a respectful way? please take some time to discuss self-catheterization and this challenge with your (relevant) patients to collect their perceptions on the matter (ideally, two to three views); summarize the responses here. what are their worries and barriers related to self-catheterization (physical, psychological, social, etc.), and how do they feel those concerns could be dealt with in a respectful way? day 5 we learned in the previous phase that there is a challenge related to siloed thinking across wards. what are your thoughts on this? what could be done to better link the wards and the stages of the patient journey? please be as specific as possible, including examples or suggestions. [qualitative research in medicine & healthcare 2019; 3:7795] [page 61] article no nco mm er cia l u se on ly before we say goodbye, we would like to better understand what your typical workday is like. we would thus like you to spend the day logging your activities and tasks. before the end of your shift, consider two things. first, was this a typical working day? if not, what would it typically look like? second, describe in detail any disturbances, delays, tensions, and so on that you felt during the shift, particularly those in relation to self-catheterization. help us understand what could be done to avoid such issues in the future. ethical considerations we gave all participants anonymized names and identification numbers. we took into account the special ethical considerations appropriate to interviewing and observing at a hospital, following the international code of the international chamber of commerce and esomar.25 we acquired legal access, permission, and written consent from the national spinal injuries centre and stoke mandeville hospital. furthermore, we made special considerations when interviewing patients to make sure that they were capable of making informed decisions and were not unduly pressured to cooperate with the research request. patients were recruited via referrals from the health care staff. before contacting patients, researchers contacted and explained the research procedures and recruiting criteria to nurses, emphasizing that participants’ responses were anonymous and confidential and their right to refuse to participate without jeopardizing treatment. the selected patients were informed by the researcher that the interview was voluntary, and they could drop out at any time. further, it was specified in the interview guide that the interview could be shortened if the patients started to feel tired, either according to the patients’ statements or the researchers’ judgement. analysis the whatsapp data and nurse and patient interviews were analyzed by traditional coding9,32 following four steps: organizing, recognizing, coding, and interpretation. the first step was to organize and prepare the data for analysis. the interviews from nurses and patients were transcribed verbatim, and the visual materials were catalogued. the next step was recognizing; transcriptions were read several times by two researchers to establish the concepts and themes. this second step provides a general sense of the information and opportunity to reflect on its overall meaning.32 the third step was coding, during which researchers organized and labelled the data in categories/subcategories. various topics were clustered to avoid having too many categories. the last step was interpretation, which included an analysis of the categories using a question from creswell32 (what lessons have we learned?) and consideration of the terms of a workflow journey from point a to point b. results and discussion advantages of using whatsapp as a mobile ethnography tool compared to classic ethnography, such as go-along methods, the six nurses used whatsapp as part of the ethnographic data collection, which provided several advantages. researcher not present the researcher was absent, which minimized the bias and presence in situ. this probing method provided the nurses with time to reflect upon the tasks and questions without disturbance from the researcher. timing and reduced recall bias this mobile ethnographic method improved the data by taking advantage of ubiquitous mobile technology. whatsapp provided rapid communication in challenging scenarios, meaning that the documentation (text, photos, or videos) happened immediately (at the touch points) or shortly after (within the same day) – whenever the nurses had time. this immediate documentation minimizes recall bias, and dates and times were automatically registered and stamped. in-depth information the study’s whatsapp data provided lots of contextual information, which allowed for more detailed information about the situational context than, for example, an interviewer could gather alone. informal communication an interesting result was that communication via whatsapp involved an instant messaging thread between the participants and the researchers. the continuity in the communication was provided through fast text messages. furthermore, this communication was informal and friendly, with messages such as have a nice weekend or sorry, i will continue tomorrow, as well as the use of emojis. familiarity the nurses were already used to whatsapp, which provided confidence with the platform. engaged participants the participants showed high engagement as soon as the communication and documentation started. this could be due to the participants’ use of their own smartphones but might also be because the nurses’ personalities made them particularly well-suited to helping others (compared to people in other professions). [page 62] [qualitative research in medicine & healthcare 2019; 3:7795] article no nco mm er cia l u se on ly spanning geography the researchers were somewhere else (in another country) as the data collection through whatsapp took place. however, the possibility of support was present if the nurses required it during the data collection. economic efficiency as the researchers did not need to be located in situ, this study was rather economically efficient. furthermore, this method facilitates research on a large number of individuals simultaneously, which also lowered the costs. challenges of using whatsapp as a mobile ethnography tool some challenges developed in using whatsapp for data collection are listed below. preparation this mobile ethnographic method demanded much preparation from both the researchers and the participants. the nurses needed instructions as to what information they should collect and which events they should document as well as how and why they should do so. thus, researchers were attentive and made sure that the participants understood their tasks. mobile ethnography is a self-documentation method; the researchers were not present in situ to guide the nurses, so the instructions needed to be very clear. there were almost no instances of questions from nurses regarding the specific instructions, though there were some questions about how much they should document. order and structure one of the main conclusions from this study is the importance of reflexivity and strategy in terms of ensuring that the study design and phase execution made sense for the nurses. in particular, it was time consuming to construct the right tasks for today and the accompanying questions related to the events taking place during a normal workday for the nurses. therefore, the go-along observations were very beneficial before initiating the specific mobile ethnography. limited amount of data the information received was informative but rather brief. this means that the method did not capture hidden elements or provide significant depth, establishing limitations of data depth and the structure of the software itself. therefore, it is important to use triangulation to supplement the whatsapp data (e.g., through interviews). no nonverbal communication face-to-face interactions did not occur in this method, so some important nonverbal communication is missing. ethical concerns even though whatsapp provides secure and end-toend encryption of all data transmitted through the application, particular attention must be paid to ensuring the protection of personal data. in this study, we double secured all the data; furthermore, we had very strict rules about taking photos only of objects, not of persons (either staff members or patients). researcher-participant distance a common well-described element within qualitative research is the importance of the researchers’ position in interaction with participants.6,8,24,32 this includes the concept that researchers may influence the research and the findings, which requires reflexivity. within this study, there are several issues requiring further reflexivity in regard to researcher-participant relationships. first, nurses may have been more willing to share their experiences due to their tendency toward helpfulness as nurses and/or a perceived sympathetic communication with the researcher, which included elements outside the specific today’s tasks and research questions. this included texted greetings from the nurses, such as hi, good morning, good night, sleep well, have a nice day, have a nice weekend, and b2w (back to work). there were also instances of perceived guilt when not providing data, e.g., sorry, i will continue tomorrow, sorry, but a rather busy day, and i promise to feed in tomorrow. many of these text messages were also followed by emojis, which expressed nurses’ emotional states and could be seen as compensation for the missing nonverbal communication. these friendly messages also shaped the nature of the researcher-researched relationship, which in turn affected the information that the nurses are willing to share. informal communication supported trust, which also could mean that the nurses were more comfortable discussing and sharing information. however, it is important to maintain reflexivity in data collection phases, meaning that the development of trust still fell within a researcherparticipant (data collection) relationship. it would be both awkward and impolite if the researcher did not respond to these informal communication elements, though all the messages were responded to in a polite, formal way. this means that the replies avoided eliciting further emotional states from the researcher (both in text and signs, including emojis) and common friendly text/chat abbreviations (e.g., u2). the replies were more like encouragements for further data-collection engagement, such as no worries. looking forward to your potential texts and photos tomorrow. these were the specific advantages and challenges of using whatsapp as a methodological tool; in the following subsections, we proceed with the results within casespecific elements. time and space for training the results of this study reveal that nurses at national [qualitative research in medicine & healthcare 2019; 3:7795] [page 63] article no nco mm er cia l u se on ly spinal injuries centre often have very positive attitudes toward self-catheterization. there was also consensus that patients’ successful use of self-catheterization requires patient education and training. bladder management (including self-catheterization) at the national spinal injuries centre is a relatively small part of the staff’s remit, and this involvement is subsequently often lower in priority than other tasks. even among the nurses and health care assistants who are most involved in bladder management, this area presumably only represents 5-10% of daily tasks. however, perceptions of bladder management and practices do vary across wards, typically with increased involvement and relevance as the patient journey progresses. the patient journey includes four main steps: acute ward, rehabilitation, pre-discharge, and outpatient. for physiological reasons, most patients in the acute ward are not well-suited to self-catheterization training or use, so their transfer to rehabilitation is often thought of as the decisive moment when self-catheterization training begins. however, once in rehabilitation, selfcatheterization training often competes with numerous other activities for the patients’ (and nurses’) time. physiotherapy and occupational training, in particular, seem to have a higher priority than bladder management, which has to be scheduled around these activities rather than holistically integrated into the rehabilitation program or paced to suit the patient. one nurse concluded: on weekdays, the patients attend their physiotherapy and occupational therapy appointments and are usually tired when they come back. there are a lot more disturbances and tension. on weekends, we have time to breathe, have a chat with the patients and catch up on paperwork and teaching (whatsapp, id 1503). this means that patients were often left to train either late in the day or on weekends, when they were likely to be tired and when a competent self-catheterization nurse was less likely to be available. another element that was revealed from the photos taken on whatsapp was the specific training facilities (figure 2), which could be documented as scarce and improvised. offices, private rooms and toilets were used as available but did not necessarily provide the best intimate spaces. there were also photos taken on whatsapp documenting various staff communications, including information boards. however, several of the nurses found it very difficult to find the time for staff education; the information boards were available across wards, but it was equally hard to find time to update these information boards. a patient must be able to self-catheterize from the start, as staff members cannot be dedicated to catheterizing patients regularly. this means that patients’ training, and psychological and physiological issues push selfcatheterization back to a much later stage in the process, [page 64] [qualitative research in medicine & healthcare 2019; 3:7795] article figure 2. example of whatsapp photos of facilities. no nco mm er cia l u se on ly reducing the length of the period when the patient is allowed to get comfortable with self-catheterization. nurses self-reported spending around 30 minutes to one hour each day dealing with catheters (longer when there were problems such as blockages) during each 12-hour shift. the bulk of their days were spent washing, dressing, and feeding patients; conducting drug rounds; taking patients to rehabilitation activities; and performing medical tests. one nurse stated: what chance do i stand when the staff on the acute floor at senior level do not understand selfcatheterization? we need more support in selfcatheterization education of staff by companies, as in my 30 hours, i cannot cover 5 wards (interview, id 1504). the nurses observed that there were not enough selfcatheterization ambassadors and that the time for training nurses across wards was insufficient. previously, time slots were dedicated to nurse-to-nurse training. finding the time to take nurses off the floor is difficult, and high staff turnover means a continuous loss of skills and a degradation of best practices that is hard to make up for. consequently, many nurses in the wards lack the confidence and skills needed to train self-catheterization patients – and this is only exacerbated by the substantial language barriers among the many foreign nurses. sometimes, these problems result in unsuccessful training experiences for the patients and for the nurses, who feel pressured, misunderstood, and alone. at other times, it results in ambassadors being called on to train unknown patients in other wards. one nurse explained: patients are afraid of the unknown. nonnativespeaking staff find it hard to explain self-catheterization in a way that reassures the patient and makes them comfortable, leaving the patient to think: ‘no! that is not for me. that sounds awful’ (id 1505). these issues increase the existing pressure on nurses, further promote delays in learning about self-catheterization, and cause uncertainty for patients, who are often forced to take part in a very intimate procedure with an unfamiliar nurse. the complex interactions between nurses and patients thus, although nurses often consider self-catheterization as the gold standard, it only is the best choice if it works for individual patients. our results also reveal some obstacles for using self-catheterization from the nurses’ perspective. among patients who are perceived as potential self-catheterization candidates, the main obstacles are as follows: i) arm or shoulder fatigue, e.g., from wheelchair transfers; ii) taboos related to genitalia; iii) fear of self-inflicted injury and pain; iv) worries about wetness between catheterizations; v) physiological aspects, such as comorbidity and obesity; vi) lifestyle conflicts related to the relatively strict management regime of selfcatheterization (e.g., management of alcohol intake and situations without toilet access). the somewhat soft adherence approach to bladder management that characterizes nurses’ culture allows for more patient pushback regarding self-catheterization. treatment goals, choices, and routes are, to a large extent, centered on the patient’s needs and wishes. however, this study’s results also suggest that some nurses (particularly less experienced ones) find it quite hard to challenge patients’ views when they do not coincide with their own. below are some related statements from the nurses: patients come with a multitude of issues. social issues, family background issues, bad hospital experience issues. and we inherit this and have to deal with it. the patients have little trust (whatsapp, id 1505). i think we give our patients too many choices that may be ill-informed or do not encourage them to do the right thing. self-catheterization is like tackling a gym session with a personal trainer. you know it is good for them in the long run but you hate the thought of doing it (whatsapp, id 1502). as the nurses stated, patient care and treatment is rather complex due to the multitude of issues patients can have. this is critical in a treatment area that is often characterized by scared and overwhelmed patients with little trust and by a relatively high prevalence of mental and social difficulties. however, the nurses also deal with these patients professionally and find ways to tackle these issues. culture and shifts in decision-making this study’s results suggest that medical consultants are often primary decision-makers when it comes to bladder management. in the opinions of senior nurses in particular, this represents a shift in decision-making, as nurses once acted much more independently. nurses find they are often better equipped than consultants to address treatment needs in this area, as they are closer to the patients and have more in-depth knowledge and hands-on experience. thus, from the nurses’ point of view, this shift not only undermines their authority and expertise but does not align with the best practices for bladder management. this study’s results also indicate that medical consultants might have less positive perceptions of self-catheterization than nurses; as nurses (especially inexperienced ones) often find it hard to defend their views (when they contrast with the patients’), the choice of treatment implies a potential conflict. in relation to self-catheterization, some nurses found that patients were labeled with self-catheterization inappropriately or prematurely because consultants had taken the lead. i have been closely involved in self-catheterization training for probably 15 years. i feel in recent times, consultants are pushing to become more involved in decision making where self-catheterizations are concerned. this causes conflict, as often patients are given conflicting guidance. many [qualitative research in medicine & healthcare 2019; 3:7795] [page 65] article no nco mm er cia l u se on ly times, the patient chooses to listen to the consultant as they feel [the consultant] must know more. often, this is not the case. then i am left to try and repair the damaged confidence and build trust (interview, id 1501). this concept was validated by other patients: it tends to be the consultant who broaches the subject with patients and nurses who explain and answer questions (patient interview, id 1503). yes, it was the consultant whom i talked to and seemed quite knowledgeable (patient interview, id 1507). the nurses clearly perceive that they are becoming less influential, and established self-catheterization practices are consequently disappearing. the nurses also perceive that focus is often on bladder stabilization and health rather than on bladder management. from the nurses’ points of view, the shift to medical consultants as the primary decision makers undermines the nurses’ authority and expertise as well as the established best practices around bladder management. conclusions the novelty of this article is the structured framework for using mobile ethnography and the emphasis on reflexivity when using, e.g., whatsapp as an ethnographic method. the main conclusion is that the use of whatsapp as a self-tracking tool can extend the methodological toolbox and support the possibility of in-depth data insights and the potential for increased triangulation so as to minimize bias. the use of whatsapp for self-tracking within this study minimized both the researchers’ presence in situ and the participants’ recall bias. besides these overall advantages, we can also conclude that using mobile ethnography and whatsapp requires much reflexivity and preliminary work to be beneficial. the nurses provided text messages, photos, and videos as part of their continuous communication in a very engaged way; this included complex contextual elements and was documented in real time. as part of the data collection, an almost friend-like communication developed between participants and researchers, with some very informal communication elements. we conclude that this type of mobile ethnography provides dynamic interaction but needs to be very carefully handled, maintaining the general data protection regulations while encouraging trust, engagement, and continuous data collection. another conclusion is that the data analysis associated with this method is rather time consuming, as the raw data is participant-driven and unstructured. this means that results based on mobile ethnography can be difficult to analyze due to the fragmented data structure. therefore, carefully structured data analysis is needed, as much of the information is not relevant to the research. the ethnographic approach applied to the given case study provided deep insights into specific elements within nurses’ perceptions and practices for improved workflows and procedures when using and introducing self-catheterization for patients. based on the results from this study, the management at stoke mandeville hospital employed one extra nurse with a special focus on self-catheterization. from this study, it was rather clear that nurses perceived bladder management as not being properly prioritized during rehabilitation. conversations about bladder management were often postponed and taken over by medical consultants due to a lack of resources or the absence of a rehabilitation mindset. references 1. yin r. case study research: design and methods. 4th ed. thousand oaks, ca: sage publications; 2009. 2. weld kj, dmochowski rr. effect of bladder management on urological complications in spinal cord injured patients. j urol 2000;163:768-72. 3. krebs j, wöllner j, pannek, j. risk factors for symptomatic urinary tract infections in individuals with chronic neurogenic lower urinary tract dysfunction. j spinal cord med 2015;54:682-6. 4. wyndaele j. complications of intermittent catheterization: their prevention and treatment. j spinal cord med 2002;40:536-41. 5. coloplast continence life study review 2017/2018. coloplast 2018, study 2017-18, article 03. humlebaek, denmark: coloplast; 2018. available from: https://www.coloplast. com/products/bladder-bowel/continence-life-study/2017/ 6. marcus ge. ethnography in/of the world system: the emergence of multi-sited ethnography. annu rev anthropol 1995;24:95-117. 7. stickdorn m, frischhut b, schmid js. mobile ethnography: a pioneering research approach for customer-centered destination management. j tour anal 2014;19:491-503. 8. hein w, o’donohoe s, ryan a. mobile phones as an extension of the participant observer’s self: reflections on the emergent role of an emergent technology. qual market res int j 2011;14:258-73. 9. bjørner t. qualitative methods for consumer research: the value of the qualitative approach in theory and practice. copenhagen: hans reitzels; 2015. 10. spooncer f. behavioural studies for marketing and business. leckhampton: stanley thornes; 1992. 11. hesse-bieber sn. the practice of qualitative research: engaging students in the research process. 3rd ed. london: sage; 2017. 12. pink s. situating everyday life. london: sage; 2012. 13. barton td. student nurse practitioners – a rite of passage? the universality of van gennep’s model of social transition. j nurs educ pract 2007;7:338-47. 14. hine c. connective ethnography for the exploration of escience. j comput mediat commun 2007;12:618-34. 15. finkelman a. professional nursing concepts: competencies for quality leadership. 4th ed. burlington, ma: jones and bartlett; 2017. 16. lupton d. the commodification of patient opinion: the dig[page 66] [qualitative research in medicine & healthcare 2019; 3:7795] article no nco mm er cia l u se on ly ital patient experience economy in the age of big data. sociol health illn 2014;36:856-69. 17. lupton d. the quantified self. cambridge: polity press; 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[qualitative research in medicine & healthcare 2019; 3:7795] [page 67] article no nco mm er cia l u se on ly layout 1 introduction inflammatory bowel disease (ibd) is a chronic and incurable condition involving inflammation of the digestive tract. ibd often involves severe pain, fluctuating and painful symptoms that can result in abdominal pain and even surgery, and can lead to life-threatening situations.1 moreover, ibd is widespread: it affects approximately 1.4 million people living in the united states with about 30,000 new cases diagnosed yearly.2,3 ibd affects both men and women, with symptoms affecting the digestive tract in often debilitating manners. the costs of treatment range from varying medications to treat symptoms, to surgery when medications can no longer adequately control symptoms. individuals with ibd may often appear to be physically well because ibd does not manifest externally, so the difficulties associated with managing the diseases can be further complicated. ibd affects patients in most aspects of their daily lives, such as family, work, friendships and extracurriculars.4-6 by understanding the experience of patients living with ibd in areas where health disparities persist,4 such as rural communities, we can gain valuable insight on factors that contribute to their quality-of-life. among the studies that have explored these issues, patients have communicated anxiety surrounding health care provider interactions, expressing concerns that they tend to treat symptoms rather than the whole problem.7 other studies have found that meaningful dialogue about ibd tends to take place within social support groups8,9 which help patients share life experiences, information and knowledge in addition to other social interactions.10,11 if we hope to develop appropriately tailored programs to work with providers, we need to understand the unique experiences that rural patients with ibd face. the goal of this research study is to explore the illness experience of patients living with ibd in a rural setting through their accounts given via interviews. interviews analyzed through methods such as thematic analysis12,13 offer an opportunity to better understand how individuals make sense of ibd in a rural setting.12,14,15 these experiences can help experiences of patients living with inflammatory bowel disease in rural communities rebecca k. britt,1 andrew englebert2 1department of journalism and creative media, university of alabama, tuscaloosa, al; 2ame family law, menasha, wi, usa abstract inflammatory bowel disease (ibd) is a chronic disease that often has fluctuating and painful symptoms. ibd patients must cope with a lifelong illness with relapses, remissions, and varied treatments that can affect their overall quality of life. patients living in a rural setting are faced with further challenges such as access to healthcare, physician availability, and socioeconomic factors. for the current study, we interviewed adult patients in a clinic who were diagnosed with ibd for at least 3 years to better understand their experiences with the aim to inform intervention and educations for patients and physicians. through a thematic analysis, we argue that five themes emerged from the data: i) ibd etiology, ii) ceding self-care, iii) environmental factors associated with disclosure, iv) stigma, and v) environmental obstacles to care. we suggest opportunities for research and collaboration among researchers and practitioners to help reduce stigma associated with ibd and promote health among rural communities. correspondence: rebecca k. britt, department of journalism and creative media, university of alabama, 484a reese phifer hall, tuscaloosa, al 35487, usa. tel.: 205.348.8599. e-mail: rkbritt@ua.edu acknowledgments: the authors would like to thank patients for taking the time to participate in this study. key words: inflammatory bowel disease; thematic analysis; health experience; inflammatory bowel disease in adults; rural settings. contributions: rkb: data collection and analysis, manuscript write-up, manuscript editing; ae: research assistance, assistance with data collection and analysis, literature review, manuscript editing. conflict of interest: the authors declare no potential conflict of interest. funding: none. received for publication: 2 december 2018. revision received: 19 march 2019. accepted for publication: 19 march 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright r.k. britt and a. englebert, 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:40-46 doi:10.4081/qrmh.2019.7962 [page 40] [qualitative research in medicine & healthcare 2019; 3:7962] qualitative research in medicine & healthcare 2019; volume 3:40-46 no nco mm er cia l u se on ly identify and address the struggles of chronic health care in rural communities. by learning about the experiences of individuals who cope with chronic health issues, we as scholars and educators can build strategies that can be used to improve potential barriers in health services that may impede overall health care. literature review health care and inflammatory bowel disease ibd primarily consists of chronic inflammation of the digestive tract and is typically diagnosed as crohn’s disease or ulcerative colitis. the diseases commonly have symptoms including abdominal pain and fluctuating bowel symptoms.16 ibd illnesses are commonly associated with inflammation of the gastrointestinal tract, and those such as crohn’s disease are typically diagnosed as autoimmune disorders.1,16 similarly, colitis occurs when the colon becomes inflamed and develops ulcers, resulting in abdominal pain. in both cases, symptoms associated with ibd tend to fluctuate. severe cases of ibd result in hospital care and surgery for the bowels, intestines, colectomies, or proctocolectomy, in which both the colon and rectum are removed.17 while diagnosis of ibd can occur at any time, people tend to be more frequently diagnosed between the ages of 15 and 35.2,18 ibd affects both men and women; colitis is slightly more common among men, and crohn’s disease is more frequent in women.19 as symptoms fluctuate in ibd, a person may experience periods of remission, followed by relapse with subsequent and possibly new forms of treatment, which often vary.1921 as treatments can be complex, health care professionals may struggle to treat patients,22 and in other cases, it can be difficult for physicians to diagnose whether or not a treatment is effective for a patient.16,23-25 illness experiences and chronic health diseases listening to a person’s experience of living with ibd can provide education and evidence for health care provision and making sense of the disease. the illness experience has been characterized as “an experience of disruption in which the life-narrative is suspended.”12 when chronic disease occurs, it can often change the patient’s quality of life, resulting in a need for that person to adjust their lifestyle,26 including family,27-28 work, and social life.27 studies on the illness experience of patients who experience chronic diseases have sought to discover how critical situations can disrupt everyday life.27 rich et al.27 explored the quality-of-life of adolescents diagnosed with chronic health conditions by training them to record visual narratives of their illness experiences. they documented their daily lives and recorded personal monologues about their diseases. as they noted, the documentation revealed that the approach enhanced patients’ quality-of-life by providing self-examination. more recently, in a qualitative meta-study20 of online peer-topeer support of individuals with chronic illness, findings show that users tend to mobilize to increase knowledge and exchange knowledge about everyday life while also raising awareness about concerns beyond what providers have given. qualitative research in particular has lent itself to exploring the illness experience25,28-30 by providing inquiry on questions such as: how do people cope with illnesses that have intermittent symptoms? how certain is the medical knowledge with which they receive? how does one cope with day-to-day life as a result of the condition?the uncertainty behind chronic illness, and subsequently, the illness experience, can affect the patient’s entire life.30 health-based scholarship can provide valuable inquiry into the illness experience20,25 of patients that live with ibd. this can help us better understand the struggles patients face, and likewise, help both scholars and health practitioners develop programs to provide communication strategies to improve quality-of-life outcomes associated with living with chronic diseases like ibd. given this, the research question for the study is as follows: rq1: what is the experience of an adult patient with ibd living in a rural setting and the potential challenges therein? materials and methods research design the goal of our study was to interview patients who were currently receiving treatment for ibd to better understand their experiences living with the disease. we selected a qualitative research approach because it offers an inquisitive process25 that allows the patients to more fully provide their own insight on making sense of the illness.3 institutional review board approval the study received institutional review board approval from the university and waivers signed with the local participating clinic, physicians and participating staff. participants provided written consent to participate in the research. all participants signed three copies of consent forms: one for our team to retain, one for the clinic, and one for the participant to keep. recruitment we sought individuals who have had ibd at least 3 years, which is criteria used in prior ibd research.7 participants were recruited through a local clinic in a town in a midwestern part of the united states, with the assistance of clinical staff. no personal medical information was gathered. for our research team to receive confirmation that a patient had been diagnosed with ibd, that patient had to provide consent in a visit with a physician and confirm that they would be willing to participate in a private interview [qualitative research in medicine & healthcare 2019; 3:7962] [page 41] article no nco mm er cia l u se on ly about their experiences with ibd. participants received a $15 gift card as incentive for participation. our participants were aged between 18 and 51 years old. all participants met the criterion of being diagnosed with ibd more than 3 years prior to the interviews. of the participants, 21 were women and 6 were men. no participant names were included in interviews or transcription of the audio recordings. given that participants self-selected to participate, possible implications for the discrepancy of gender are noted in the discussion section. data collection our interviews were conducted at the university campus in my office (lead author). this was a careful and deliberate choice, and selected as i have immediate family members who live with ibd, so our team felt i would be able to empathize with patients in the interview process. after careful deliberation, i agreed that this would be an optimal choice. the interview guide was developed by our team, interviews were semi-structured and our questions asked about participants’ unique experience with ibd, familial experiences, strengths and weaknesses associated with care (such as healthcare access in rural communities, quality of life), and an open opportunity for participants to share their own stories. additional topics in our interviews covered treatment experiences, potential stigma associated with ibd, experiences with health care professionals, initial diagnosis, disease knowledge, and experiences associated with support (e.g., family and friends). i strove to ensure that participants’ voices were dominant in the course of interviews, so that they could tell their stories. this meant that the interview guide served as a way to direct the conversation by opening spaces for answers to unfold, but that as a researcher, i could remain humble and listen to the stories of patients during this process as opposed to directing these sessions. generally speaking, the interviews ranged from 40 minutes to 1 hour in length. data analysis each interview was transcribed by our team (myself and a research assistant). we employed a thematic analysis approach, drawing upon braun and clarke13 to code participants’ spoken words. thematic analysis ensures that participants’ dialogue about their experiences were directly reflected within our analysis. thematic analysis involves a careful reading of transcripts, revealing the patterns of shared meanings and experiences across the data. this process first began with us familiarizing ourselves with the data, where we read over the data to get a general understanding of the content. next, we took detailed notes about the ideas within the data, which helped to create an initial coding structure. we then collapsed the previous ideas into themes. after, we reviewed how the data fit into the themes identified, refining and naming themes to clarify our own understanding of the data.13 we then reviewed the data a final time with the final themes that emerged. results following the results of our thematic analysis, five key themes emerged: i) ibd etiology, ii) ceding self-care, iii) environmental factors associated with disclosure, iv) stigma, and v) environmental obstacles to care. although findings within themes do overlap, each presented unique content that patients negotiated through coping with experiences associated with ibd. inflammatory bowel disease etiology to treat ibd, we must know what causes it; but it is complex, chronic, and has multifaceted symptoms that can be difficult for practitioners to make sense of. few participants had beliefs associated with ibd etiology or knowledge of the disease itself. when i asked about how participants made sense of ibd or defined it, most reported that ibd was a largely hiddendisease. in one case, i spoke with an individual who identified as a young, working mother. she noted that ibd was as “weird as it is to discuss it. i’ve never seen someone that i could pick out with it, just as i never knew what it was before i had it. if you asked me to describe what causes ibd, i couldn’t really tell you.” notably, this same young woman explained that she had a difficult time raising her child and managing ibd, in part because she “felt there is a shortage of care…just because i am connected to a doctor and have medicine does not mean there’s a solution.” while unrelated to the theme of etiology, her story connects to larger concerns associated with ibd knowledge of the disease and service shortages to healthcare in a rural setting (e.g., inpatient substance use and treatment). no participants reported what they believed to be factors that contributed to the onset of ibd, or prior knowledge of the disease. however, participants did report that post-diagnosis, they began to try to make sense of it, though this continued to be a source of uncertainty. the following participant, a man in his mid 40s who was a crop farmer, shared the following excerpt about his understanding of ibd: i did not know what ibd was. if you told me what crohn’s was, that colitis is a disease, i would have thought this was a joke! now i’m hearing pathogen from my doctor and it’s not my time to look it up unless it’s going to help me. this same participant mentioned posited that “my doctor, a lot of times, tries to give me as much as possible, even when i don’t need the help. at times, she brings up issues i doubt are related. but she’s giving me the biggest bang for my buck at each appointment... there are a lot of patients that need treatment.” he noted, too, that he “is an optimist...i’m lucky that i own my business. i’m sure there are others who don’t get this life.” though ibd knowledge [page 42] [qualitative research in medicine & healthcare 2019; 3:7962] article no nco mm er cia l u se on ly may be deprioritized for a participant, it may be that, as this participant at least recounts, physicians may provide integrated services to ensure that patient needs are met. moreover, participants at times reported uncertainty associated with fluctuating symptoms with ibd, and how they tried to make sense of it, often noting that it was difficult since it was likewise a struggle to make sense of the disease itself (e.g., “if you don’t know how to define ibd, well, i think probably it’s hard to also communicate about it”). several participants mentioned that they “…wish i could have prevented this, but i don’t know how. i tried to figure it out, but somehow feel as though it was in vain.” ceding self-care in several cases, several participants i spoke with reflected on their present health and coping mechanisms regarding ibd. while some participants described their care of ibd as one that they managed on their own, many participants discussed their decision to cede control of their ibd up to family members and health care professionals. in the following excerpt, a participant, an 18-year-old young woman in college, reported, “i’ve got enough time to figure out what to eat...whether to get remicade…it does make me think i can do it, it’s in my hands, my choice.” she reported that ibd had already interrupted her life during “the point at which i should be living my best life…my best friend, my roommate, she helps me stay on track because i figure it out, sort of.” this participant later noted, “you don’t know what to do at times, so you just figure it out as you go.” as she later noted, “it’s just that i already feel stressed out… so i had her help me keep track of my doctor’s appointments. i forgot one once, had to pay a fine, and i couldn’t get in for a few weeks, and i felt awful. it was a wakeup call for missing something…it’s already an hour away. i realized i couldn’t do it alone and just needed someone to help me take care of this.” other participants noted that if they forgot an appointment, it was difficult to make another appointment in a similar timeframe. a man in his early 30s told me that he felt “bad… it’s a lot to manage. you have work, life, everything. so, i have my wife help me remember the flagyl and the next appointment. it’s that way with my doctor, i say “okay” to everything.” this participant later discussed that the illness itself remains a struggle. he noted that, “i don’t always have a way to describe iti would not say i’m someone who needs much support, if you do ask, i do not have an accurate description of crohn’s. i’m not sure my doctor does, either.” it is noteworthy, however, that these instances of ceding self-care did not mean that participants merely give up control. rather, that of ceding self-care to was a decision to negotiate daily care with family members or friends. what we noticed in the data is that this was often spurred by participants’ self-awareness, sometimes after missing a doctor’s appointment and noting the duration between the next available appointment. notably, while longer wait times to see a physician not atypical in a given community, the length of time between visits, coupled with struggles associated with transportation reaching health care providers, cost of care, among other challenging factors. environmental factors associated with disclosure we would like to point out that living in a small community may have benefits and drawbacks for patients. according to most participants i spoke with, having ibd meant that disclosure about their health care, whether with friends, family, or coworkers, often came with struggles. many participants commonly discussed their experience with ibd in an environmental context, meaning that they contextualized the effects of the disease in reference to activities with local and organizational memberships. one participant i spoke with, a mid 40s woman who was a former healthcare worker for the very clinic she was treated at, noted: “in this town, everyone knows your business.” she later told me that for her, “i am on good terms with everyone. but even i have the same wait as everyone else. that’s fair. i wish i could tell everyone, “i know you are suffering because i am too.” and if i see them in town, and i feel like we are privileged, because anywhere else, you don’t know each other.” i asked her if she could explain this to me, and she noted, “i’m proud to be from here. we’re larger than a very small town. but i run into people and know them by name. i prefer knowing who everyone is.” while these comments were not directly related to this participant’s unique struggles with ibd, they were related to environmental factors associated with disclosure, and her perceived benefits of living in a smaller, rural community. this participant noted that the ability to more easily know community members by name and learn about them – though she noted this was partially linked to her profession – meant that she felt connected, which would not be as possible in a bigger city. however, there were other participants i spoke with who felt differently. some participants tended to describe the difficulties associated with managing symptoms associated with ibd while needing to carefully hide it from their local community, which would be otherwise easier in a larger city. one participant, a 20-year-old woman, told me, “i’m a runner. i was always the healthy one. it made me [sick] to think that…so no, no, i could never share anything about ibd.” she further explained that she meant that she was “always the most fit out of my friends, and honestly, i’m the most competitive…i ran a 5k. i thought i was on my game.” she continued by telling me, “ibd made it harder to go on. i trained for 5ks. but not now. actually, now i can’t even find a proper specialist. i have to go to [name undisclosed for review] since there’s nobody in the area for the digestive surgery i probably need. it’s like a part of you is lost and you can’t explain why you don’t go train anymore.” i listened, and she continued: “but if i could choose, my hometown hospital [qualitative research in medicine & healthcare 2019; 3:7962] [page 43] article no nco mm er cia l u se on ly wouldn’t be my choice, because i’ve got this fear that i’d run into someone. and they don’t have the knowledge the way that the bigger hospitals do.” several participants shared similar stories, noting that they were concerned about their friends being unempathetic about their disease; in some cases, participants were concerned about some family members lacking concern, given that it can be difficult to make sense of the disease, its symptoms and the pain associated with. an individual with ibd can exhibit symptoms without physically appearing unwell, yet they may still be unable to participate in activities in their local community, so it is unsurprising that many participants express such communication. stigma in my conversations with participants, most expressed broad concerns with stigma, such as the concern that health care professionals did not take them seriously, particularly if they had fluctuating ibd symptoms. by this, i mean that fluctuating symptoms might include pain, fever, reduced appetite, weight loss, and other symptoms that were expressed. in some cases, concerns associated with stigma included that of family and friends, but by and large were emphasized among healthcare providers. in one conversation with a 45-year-old woman, she discussed her struggles with expressing her concerns about ibd to her doctor: “when you go to the doctor, one day, you might feel alright, and then next time, you’re in pain and can’t describe it...you might feel like they don’t take you seriously after awhile…later, i felt just weird going back, just embarrassed because you don’t know what to say since you can’t describe each day.” she continued, noting that, “you sometimes even think, you don’t want to tell your doctor that you’re afraid of having problems with the toilet, even though that’s just the idea, but not really going to happen. maybe if you have an accident, they’ll take you seriously.” i spoke with other participants who mentioned similar comments, such as my conversation with the young 18-year-old woman in college, who i referenced earlier (in the theme of ceding self-care), who said, “even though i want my health taken seriously, it’s also embarrassing to even tell my doctor. if your doctor doesn’t have it, even they might think it’s strange. there’s very few people who know beyond my roommate.” other participants made similar comments, that it was difficult to visit their specialists, whether due to symptom fluctuation or multiple treatments, largely because of fears that they would not be taken seriously. i spoke with a 27-year-old man who had spent most of his life working in a labor-intensive agricultural job. he noted that he had to ask his supervisor to adjust his duties after his diagnosis, as the occasional pain from ibd made it too difficult to complete various tasks, but that he had to carefully negotiate how he expressed the symptoms associated with ibd, “because they’re just too unusual.” he also expressed the toll that ibd took on him, saying, “you can’t go to your friends since it’s just shamed, and then your doctor thinks you don’t take care of yourself.” he later continued, saying, “even now, it’s been two years. i am not expressing all those symptoms to a nurse or doctor.” the feelings associated with such frustration continued among participants who expressed similar concerns. perhaps quite poignantly, as the young 18-year-old woman in college stressed to me, “if ibd was more clearly understood, it wouldn’t be something that would be embarrassing to speak about to others.” environmental obstacles to care perhaps most dominantly associated with challenges associated with rural care is that many participants disclosed the difficulties in accessing necessary services for care, which were often located at greater distances from their local community. these obstacles were likewise hindered by transportation costs to specialty clinics, a lack of private or public transportation available, and wages lost due to illness. given that ibd care often requires long-term treatment, many participants reported the challenges associated with barriers after diagnosis. for several participants, this meant coping with new treatment when faced with new options that might be expensive or have difficult side effects. i spoke with one participant, a 39-year-old woman who worked as a receptionist for a large manufacturer, who told me that she had to re-negotiate her priorities with work, healthcare, and family life. as she told me, “once i was diagnosed, i supposed that i had to figure out what my treatment would be. i got sent to a specialist.” she continued, saying “i’m normally sitting a lot. but the idea of sitting for an hour in a car and losing that time at work is not realistic. not for me. i need those hours.” the above story was echoed by other participants i listened to; for instance, participants likewise discussed obstacles to necessary follow-up care for more severe cases associated with ibd, along with struggles due to travel to specialty clinics. one participant, a former runner (previously mentioned in environmental factors associated with disclosure) discussed her challenges with treatment options. “cipro and gengraf weren’t available for days. i had to wait and not only that, but i had to pay for it. it’s dangerous and feels like that shouldn’t happen, but when you’re too far from (redacted), it’s just the reality.” she also told me, “i do think that where you are has a huge impact on the quality of care. i think we have fine doctors, but they can’t do much about the special care or the distance.” concerns were also posed about whether or not treatments would continue to be accessible given that new options for care continue to emerge, and that current regimens would be subsequently unavailable. while unsurprising, this is still important to note: access to healthcare facilities, availability of treatments, and challenges with managing work while also receiving care are common issues that patients living in remote or rural areas face. [page 44] [qualitative research in medicine & healthcare 2019; 3:7962] article no nco mm er cia l u se on ly discussion communicating about ibd, whether through feeling comfortable disclosing the diagnosis or communicating the uncertainties it poses and subsequently receiving treatment, results in challenges, which can heavily manifest in rural communities, particularly given the nature of the disease as an invisible illness.20 the themes of ibd etiology and ceding self-care were largely associated with participants reporting difficulty in the disruption that ibd had on their lives and the uncertainty it presented. while many participants tended to report a lack of prior knowledge on ibd and uncertainty with managing the disease, they also reflected on receiving help in managing the disease up to others – for example, in the account of a young college student, she relied on the help of a roommate. our findings have both consistencies and contrasting findings to prior research, which have found that patients, when empowered, strive to take control of their care.5,10 as the theme of environmental factors associated with disclosure revealed, participants expressed reluctance to participate in their normal communal activities. ibd is a complex disease by nature, given its fluctuating symptoms, treatment, and nature, so one type of uncertainty that patients face is the complex etiology of the disease. as one patient noted, if the disease was better understood, that might also help to resolve perceived stigma associated with ibd. when patients feel they cannot adequately communicate with health care providers or loved ones, resistance to treatment or furthering interpersonal relationships can result. we found that participants reported disclosing their disease with some, but not all, family members, along with fears about communicating with health care specialists about ibd. in several instances, participants noted that because of the words associated with ibd – such as bowelor digestive tract, such connotations left them embarrassed. given the perception of stigma on ibd and its social implications,30 this poses challenges for communication, which can certainly impact quality of life. the translational nature of communication about stigmatized illness and reluctance to communicate means there is a need to increase education and empathy associated with the disease. this means that programs that provide education are needed and access to care in rural areas, especially to assist patients like those who participated in the current study. likewise, we suggest forward-data mining real time communication from parties including the public and health departments (e.g., via python) to assess how public communication on social media about the disease is actually disclosed. we believe that such studies could yield valuable data that, when paired with qualitative analysis, could result in important insight that could inform the development of a highly tailored educational intervention. musaev et al.31 recently used this approach to explore the communication of state health departments of cardiovascular disease to inform health interventions. we suggest that such an approach should not be used in isolation, but paired with qualitative strategies to engage in the depth of communication and conversations with patients and providers regarding complex, chronic health issues. notably, a limitation in the study is that participants were recruited in a single rural community located in the united states. while studying a concentrated region can yield valuable data, these make the findings less generalizable than if interviews were conducted in a broader region, or among multiple teams that can then collate the data and compare findings. moreover, while unintended, the majority of study participants were female, which may be attributed to self-selection and through their visits with healthcare providers. while the themes that emerged in the study were clearly associated with the concept of experiences associated with ibd and living in a rural community, every effort should be made to include equal gender representation. however, it is notable that the area in which we conducted interviews was rural, with limited access to healthcare resources, which may impact participants’ experiences shared. conclusions it is undeniable that challenges persist associated with the illness experience of ibd. as a result of this study, we encourage scholars to dig deeper into how individuals with chronic health diseases manage illness discomfort and potential variability in health care services, which can affect quality of life. we also encourage scholars to navigate the stigma often associated with ibd and how it influences mental and physical health. while our findings regarding limitations in rural health care to be similar to other studies,4,21 a finding of ceding self-care emerged, which suggested that participants’ self-awareness impacted their decision making associated with how they cared for their ibd. more attention should be given to patient’s decisionmaking strategies associated with ibd and the concept of self-control with complex, chronic illness and the subtle impact of what factors lead to making decisions associated with changes in self-care. the same holds true for stigma, which in this case, largely emerged through our participants largely referencing their communication with a healthcare provider and concerns about stigma on behalf of a physician. while concerns about stigma and ibd was referenced with family and friends, participants reported concerns about being taken seriously by physicians, embarrassment over disclosing the disease, and describing the disease to a physician – even after diagnosis. this study served to explore the illness experience of patients with ibd living in a rural setting. we found that the challenges associated with treatment of ibd remain a struggle in communities where access to care is often limited, or in some cases, where patients wish for their disease to remain undisclosed. likewise, we identified that the complexity of ibd resulted in challenges with making [qualitative research in medicine & healthcare 2019; 3:7962] [page 45] article no nco mm er cia l u se on ly sense of it, from its etiology to self-care and treatment. we would like to conclude with several final recommendations. first, while it is not necessarily easy, scholars, educators, and practitioners can collaborate to develop education interventions to facilitate knowledge about ibd. next, we must work to develop patient-centered care to empower those with ibd and improve communication with health care providers. if we develop these partnerships, we can build programs that can promote communication to increase patient self-efficacy and decrease stigma associated with these illnesses. finally, future research should explore the patient experiences of chronic diseases in the context of self-management, especially since this has grown as an area of national priority, as indicated by the national institutes of health.32 ultimately, these future projects might help us serve patients who suffer from chronic diseases. references 1. american gastroenterological association. what is inflammatory bowel disease? available from: http://www.gastro. org/info_for_patients/ibd-101-what-is-inflammatory-boweldisease. accessed: september 2018. 2. crohn’s & colitis foundation. fact sheet – about ibd. available from: http://www.crohnscolitisfoundation.org/news/for-themedia/media-kit/fact-sheet-about-ibd.html. accessed: september 2018. 3. ng sc, shi hy, underwood fe, et al. worldwide incidence and prevalence of inflammatory bowel disease in the 21st century: a systematic review of population-based studies. j lancet 2018;23:2769-78. 4. smith jd, margolis sa, ayton j, et al. defining remote medical practice: a consensus viewpoint of medical practitioners working and teaching in remote practice. med j aust 2008;188:159-61. 5. björkman i, simren m, ringström g, ung ej. patients’ experiences of health care encounters in severe irritable bowel syndrome: an analysis based on narrative and feminist theory. j clin nurs 2016;25:2967-78. 6. kennedy a, robinson a, rogers a. incorporating patients’ views and experiences of life with ibs in the development of an evidence based self-help guidebook. patient edu couns 2003;50:303-10. 7. håkanson c, sahlberg-blom e, ternestedt bm. being in the patient position: experiences of health care among people with irritable bowel syndrome. qual health res 2010;20: 1116-27. 8. britt rk. online social support for participants of crohn’s and ulcerative colitis groups. health commun 2017;32:1529-38. 9. mccormick jb, hammer rr, farrell rm, et al. experiences of patients with chronic gastrointestinal conditions: in their own words. health qual life outcomes 2012;10:1-11. 10. fletcher pc, schneider ma, van ravenswaay v, leon z. i am doing the best that i can! living with inflammatory bowel disease and/or irritable bowel syndrome (part ii). clin nurse spec 2008;22:278-85. 11. cámara rj, lukas ps, begré s, et al. effects of social support on the clinical course of crohn’s disease. inflamm bowel dis 2010;17:1277-86. 12. kleiber da, brock sc, lee y, et al. the relevance of leisure in an illness experience: realities of spinal cord injury. j leis res 1995;27:283-99. 13. braun v, clarke v. using thematic analysis in psychology. qual res psychol 1006;3:77-101. 14. goffman e. stigma. englewood cliffs, nj: prentice hall; 1963. 15. roth j. timetables. new york: bobbs-merrill; 1963. 16. brittain kr, shaw c. the social consequences of living with and dealing with incontinence a careers perspective. soc sci med 2007;65:1274-83. 17. betteridge jd, armbruster sp, maydonovitch c, veerappan gr. inflammatory bowel disease prevalence by age, gender, and geographic location in the u.s. military health care population. inflamm bowel dis 2013;19:1421-7. 18. crohn’s & colitis foundation of america. ibd: the basics. available from: http://www.crohnscolitisfoundation.org/what-are-crohns-andcolitis/. accessed: october 2018. 19. centers for disease control and prevention. epidemiology of the ibd. available from: https://www.cdc.gov/ibd/ibdepidemiology.htm. accessed: october 2018. 20. kingod n, cleal b, wahlberg a, husted gr. online peerto-peer communities in the daily lives of people with chronic illness. qual health res 2016;27:89-99. 21. jones j, curtin m. traumatic brain injury, participation, and rural identity. qual health res 2010;20:942-51. 22. triantafillidis jk, merikas e, georgopoulos f. current and emerging drugs for the treatment of inflammatory bowel disease. drug des devel ther 2011;5:185-210. 23. dibley l, coggrave m, mcclurg d, et al. “it’s just horrible”: a qualitative study of patients’ and carers’ experiences of bowel dysfunction in multiple sclerosis. j neurol 2017;264:1354-61. 24. dixon-woods m, critchley s. medical and lay views of irritable bowel syndrome. fam pract 2000;17:108-13. 25. håkanson c, sahlberg-blom e, nyhlin h, ternestedt bm. struggling with an unfamiliar and unreliable body: the experience of irritable bowel syndrome. j nurs & health care chron ill 2009;1:29-38. 26. dibley l, norton c, whitehead e. the experience of stigma in inflammatory bowel disease: an interpretive (hermeneutic) phenomenological study. j adv nurs 2018;74:838-51. 27. rich m, lamola s, gordon j, chalfen r. video intervention/prevention assessment: a patient-centered methodology for understanding the adolescent illness experience. j adol health 2000;27:155-65. 28. husain a, triadafilopolous g. communicating with patients with inflammatory bowel disease. inflamm bowel dis 2004;10:444-50. 29. altschuler a, collins b, lewis jd, et al. gastroenterologists’ attitudes and self-reported practices regarding inflammatory bowel disease. inflamm bowel dis 2008;14:992-99. 30. taft th, keefer l, leonhard c, nealon-woods m. impact of perceived stigma on inflammatory bowel disease patient outcomes. inflamm bowel dis 2009;15:1224-32. 31. musaev a, britt rk, hayes j, et al. study of twitter communications on cardiovascular disease by state health departments. icws 2019;1-9. 32. national institutes of health. self-management report. available from: https://report.nih.gov/nihfactsheets/viewfactsheet.aspx?csid=70 [page 46] [qualitative research in medicine & healthcare 2019; 3:7962] article no nco mm er cia l u se on ly layout 1 introduction considerable attention has been given, in recent years, to the health of specific sub-populations. this has been guided by the understanding that certain populations may have specific predispositions to illnesses, or may encounter specific barriers in access to healthcare.1-3 the dimensions of population vulnerability are numerous and could be associated with variables as low income,4 age,5 gender6 and social status.7 many national health programs relate to the special health requirements of older people, racial and ethnic minorities and people with disabilities. in israel, special attempts have been made, over the years, to examine the health needs of various subpopulations, including arabs,8 ultra-orthodox jews,9 and immigrants from the former soviet union10 or from ethiopia.11 understanding the needs of identified vulnerabilitypopulations is crucial to addressing their problems through appropriate health policies. in addition, health authorities should also be sure that all potential groups at risk are indeed identified. here we draw attention to the health of a specific group in the israeli population, namely that of young people who have left the ultra-orthodox religious community to join the main stream non-religious community.12 these individuals, often referred to as ex-orthodox (exor) or answer seekers, are gaining volume both in number and visibility, and reflect ongoing social and demographic changes in the israeli society.13 more and more young individuals who spent their formative years in an extremely religious environment choose, as young adults, to make the transition to the secular world. similar trends have been observed among ultra-orthodox jewish communities outside of israel,14,15 as well as among highly religious christian communities.16,17 leaving the ultra-orthodox world involves notable challenges. those who leave are often banished from family and other support groups. many of them face isolation, financial distress and struggle with gaps in basic educahealth concerns of young israelis moving from the ultra-orthodox to the secular community: vulnerabilities associated with transition baruch velan,1 ronit pinchas-mizrachi2 1the gertner institute for epidemiology and health policy research, sheba medical center; 2ramat gan academic college, ramat gan, israel abstract many young israelis leave the ultra-orthodox religious community to join the secular world. in this study we examine health considerations of ex-orthodox (exor) individuals in an attempt to define their vulnerabilities and needs.12 young adults were asked to relate to health problems that trouble the exor community. the semi-structured interviews were analyzed qualitatively to identify relevant motives. interviewees indicated that the exor population could be affected by mental health problems, including stress and depression, by sexual health problems, and by risks related to substance abuse and hazardous behavior. interviewees suggested that these problems are associated with difficulties encountered prior and during the transition process, as well as with the hardships of acculturation and assimilation in the secular world. comparisons to previous findings on the health of immigrants, young adults and lgbt populations suggest that the process of transition per-se could engender vulnerability and trigger health problems. correspondence: baruch velan, the gertner institute for epidemiology and health policy research, sheba medical center, 1 emek dotan str. ramat gan 5262100, israel. tel.: +972546725057. e-mail: baruch_v@yahoo.com acknowledgements: the authors would like to thank the out for change organization for their assistance with this study, and especially mr. yosi klar for introducing them to the ex-orthodox community and helping them understand the needs. the authors also tank prof. yaacov yadgar for sharing with them his insights on religiosity in israel. key words: mental health; sexual health; substance abuse; risky behavior; vulnerable population; immigrant’s health; lgbt health; religion. contributions: the authors contributed equally. conflict of interest: the authors declare no potential conflict of interest. funding: funding was provided through the research budget of the israel academic college. received for publication: 24 january 2019. revision received: 19 march 2019. accepted for publication: 19 march 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright b. velan and r. pinchas-mizrachi, 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:32-39 doi:10.4081/qrmh.2019.8051 [page 32] [qualitative research in medicine & healthcare 2019; 3:8051] qualitative research in medicine & healthcare 2019; volume 3:32-39 no nco mm er cia l u se on ly tion, and preparedness for employment.12,14 these hardships can easily translate to social vulnerability and eventually affect the health of exor. all this can be potentiated by the fact that transition to secularity occurs most often during young adulthood, an age noted for its specific health vulnerabilities.18 moving from the orthodox world to the secular one is a complex process. it is marked by a formal act of abandoning characteristic religious practices, such as wearing head covers or observing the shabbat. it should be noted however that this formal step is preceded by a long period of deliberation, and is then followed by a long period of cultural adaptation.13,19 this transition process resembles two other transition processes: immigration from one country to another and coming out for lgbt persons. both processes resemble secularization as they involve the decisive formal step, preceded by deliberations, and followed by acculturation. in the case of immigrants, like in the case of exor, financial, bio-medical, structural and cognitive factors can potentially contribute to health vulnerability.20 in the case of lgbt people, like in the case of exor, individuals struggle with an identity crisis, doubts, disguise and stigmatization21,22 which can have a toll on health. this is an exploratory study, in which we interviewed 12 young adults who have recently made the transition from the jewish orthodox world to the secular world. we asked them to identify prevalent health problems among exor, and then used their accounts to portray the health vulnerabilities of this emerging population. materials and methods study sample we initially recruited interviewees through the mailing list of out for change (yozimleshinuy), a nonprofit organization assisting exor individuals in their new life. later on recruitment continued through what is known as snowballing, where interviewees recruited other people for the study. in the end, we interviewed twelve young adults, who identified themselves as ex orthodox jews who had recently transitioned to the secular society. we ended recruitment after the 12th interview, once a preliminary content analysis revealed that we had reached a point of repetition in the data. the study sample included 8 males, 22-34 years old, and 4 females, 20-29 years old. all participants were brought up in orthodox ashkenazi jewish families (ancestors originating from europe) identified as hasidic or non-hasidic (the two major branches of jewish orthodoxy). eight of the participants were single, one married and 3 divorced (males who left behind their spouses and children during the process of secularization) overall, the process of secularization was rather long for the participants. the beginning of the process occurred between the ages of 15-22, with a median age of 18. the formal step of coming out, namely the act of abandoning religious practices and informing others about the change in identity, occurred between the ages of 16-29, with a median age of 21. the interviews were conducted 2-5 years after coming out in the case of 6 interviewees, and 6-13 years after coming out in the case of the other six. interviews we conducted interviews in hebrew using a semistructured format that was designed by us. each lasted between 50 and 100 minutes. interviews included the following steps: i) the interviewees were informed about the aims of the study, the format of the interview, and the identity and affiliations of the researchers. at this stage, full anonymity was assured. ii) the interviewees were asked to respond to a single open-ended question: what in your opinion are the health concerns of exor? all statements were recorded, without any interference or guidance. iii) the same question was asked again, after indicating that health does not necessarily mean bodily heath, and can include wider aspects of health, and again all statements were recorded, without any interference or guidance. iv) interviewees were asked to address special concerns about mental health, sexual health, safe behavior and healthy lifestyle. content analysis we used a content analysis in order to identify what we defined as major motives in the interviews. we designed our content analysis methodology by drawing from an interpretative phenomenological approach.23 interpretative phenomenological analysis (ipa) focuses on examining personal lived experiences. it entails detailed analysis of personal accounts, and examination of how individuals make meaning of their life experiences. this is paired with the interpretations of the researchers to create a double hermeneutics, or a lamination of interpretative positioning. in contrast to grounded theory, another widely used qualitative methodology, ipa does not focus on generating a theory for the process, but rather on describing and interpreting the essence of the process. in this specific study interviewees provided information on health concerns among exor, together with personal accounts on the experiences of leaving the orthodox world. based on their own accounts, interviewees were encouraged to propose interpretations on possible interrelationships between emerging health problems and the process of moving out. authors then used these proposed interpretations to build higher level insights on the health vulnerabilities of populations in transition. [qualitative research in medicine & healthcare 2019; 3:8051] [page 33] article no nco mm er cia l u se on ly the transcript of each interview was screened for coherent statements, yielding lists of 30-50 statements per interview. we then examined each list and typified the statements into categories by using three criteria: i) identification of a health related motives (e.g. mental health, sexual health, risky behavior), ii) identification of societal motives (e.g. isolation, deprivation, loss of boundaries, iii) reported association with the act of transitioning (e.g. causative association, indirect association, lack of association). this typification was conducted separately by each of the researchers, and notes were then compared. in most cases typification was similar; differences were resolved by mutual agreement. the list of identified motives was used to extract the most relevant quotation, to be included in the result section, using the medical typology as lead, and the two other typologies as a means for interpretation. in parallel annotation was conducted by processing the texts with the atlas.ti software system. this analysis did not provide additional significant motives. we should note that one of the authors was brought up in an orthodox family, conducts a moderate orthodox lifestyle, and is personally acquainted with exor individuals. the other author adheres, in practice and ideology to secular judaism. both authors made their best to be impartial and objective, and to refrain from any sort of partisanism. nevertheless, the authors did exercise a certain form of censorship, as quotations that risked compromising the interviewees (loss of anonymity, abuse experiences, highly intimate information, conflict with the law) were not included. results health related concerns of orthodox religious individuals turning secular the act of leaving the orthodox society occurs most often between the ages of 18-26. at this age most people feel that they are at the prime of their health, and are not expected to be concerned about medical problems. nevertheless this did not seem to be the case for many of the young exor interviewed in this study. except for two interviewees who claimed that no specific health problems can be associated with exor, all others were quick to comment on medical concerns that bother exor. moreover, there was a consensus among these 10 interviewees that the major concerns of exor relate to mental health. this was manifested by the striking similarities in their statements: the first and most significant problem is mental health. their problems relate to the health of the mind, stress, anxiety and such. exor should be regarded as a group with specific mental health problems. they all need a major ‘makeover’ in this domain. mental health problems are of major concern among exor; this is critical and should be taken care of. in addition, several interviewees have described concerns related to sexual health and to risky behavior: there are all those things that people don’t talk about. everything that relates to sex is a problem. and exor may have drinking problems, drug problems and engage in dangerous sexual practices. physical or direct bodily medical problems were not associated with leaving the orthodox world, yet some interviewees related to poverty, and to the difficult life conditions associated with transition that can indirectly affect physical health: exor often don’t have the money to access the best health care, they are more susceptible to illness, as they their struggles lead to exhaustion, fatigue, and wearing down. all the information provided above relates to answers to the general question about health concerns, asked in the first part of the interviews. taken together, these spontaneous responses revealed that the major concerns of exor related to mental health, sexual health and risky behavior. problems of this nature are not uncommon among young adults in many different societies. therefore, their association with the act of secularization required further examination. to this end, participants were asked to speak further about each of the above mentioned health problems, to provide more information, and to explain their perceptions of the possible association between these specific problems and the experience of leaving the orthodox world. all this is detailed in the following sections. prevalence of mental health problems among ex-orthodox analysis of all interviews suggests that exor are preoccupied by mental health. this is manifested by the fact that all interviewees, even those denying health concerns in the first round of questions, eventually indicated that mental health problems are prevalent among exor. moreover, examination of the interview transcripts revealed that the major part (volume wise) of many conversations was dedicated to these issues. this impression was further substantiated by the fact that 5 of the 12 interviewees attested to personal experiences related to mental health problems. various manifestations of depression appear to be quite prevalent among exor as indicated by accounts of first hand experiences: after coming out, i felt grounded. i did not work for an entire year. i was not able to do anything. another interviewee described a similar experience: i had this strange feeling, i don’t know if this was depression, but i did not feel like getting out of bed, or meeting other people. depression was also described as a second hand experience: many of the people i know are undergoing psychological therapy. a close friend of mine exhibited symptoms of anxiety immediately after transitioning and needed treatment. other descriptions included indication of lasting sleeplessness, anxiety and stress, as [page 34] [qualitative research in medicine & healthcare 2019; 3:8051] article no nco mm er cia l u se on ly expressed by two interviewees: i came out two years ago and i still have sleeping problems or today, i don’t experience real anxiety, but still something inside me keeps me worried. i am working, i have a car, have a home, but there is always this feeling of uncertainty. while being unanimous about the prevalence of certain mental health problems, interviewees did not feel that suicide can be defined as a specific risk for exor. in recent years, two cases of suicide among exor gained much publicity and attention, yet interviewees did not report on suicide attempts among their exor friends. one interviewee felt that there is a misconception about suicide among exor that is enhanced by popular media. this interviewee related to this in a very colorful way: let’s assume that someone speculates that redheads tend to kill themselves because they feel different. then the media starts to report on every redhead that committed suicide, and this becomes an accepted notion. the association between mental health problems and moving out from the orthodox world each of the steps in the process of transition from the orthodox to the secular world can be very strenuous emotionally. the years prior to formal transition are marked by spiritual struggles and by questions about faith, values and the right way of life. one interviewee described this as following: i struggled with god, struggled with my faith. at the end of the struggle i become a different person, but this had great emotional consequences. religious and spiritual struggles can be very stressful and affect health.24 in the case of exor, this stress can be enhanced by the fact that the struggle usually occurs while young individuals attend religious schools, and hide their religious doubts from their peers. the actual act of moving out or coming out is probably stressful as well. one reveals the change in the religious orientation to others, leaves home and school, and undergoes a transformation in appearance (no head cover, no beard, no modest constraining clothing). moreover, the immediate outcome of this step is the loss of social support. exor transition from a much protected, familiar world to a terra incognita, where they feel vulnerable and disorientated: we leave a very organized, extremely protective environment to an environment where everything is new, where you don’t have your own place. this is a difficult experience, very stressful. another interviewee described this as following: we move from one form of anxiety, caused by living in a very intimate community, where everyone watches you, to another form of anxiety caused by being alone and deserted. the effect of isolation was expanded on by some interviewees: the orthodox community is very protective, once you are out you feel deserted, no one is there to help you; my best friend deserted me, this broke my heart. as another interviewee said: there is nowhere to carry your pain. the act of moving out is followed by a difficult period of acculturation. this was described as follows: we feel like immigrants in a new country. we look like the others, we talk like the others, but we are lost foreigners. the stress of adapting to the new country is often accompanied by stress caused by the harsh life conditions of most exor. they often encounter financial difficulties, and they need to find a place to live and seek education. moreover, their religious education did not furnish them with skills required for earning a livening in a modern secular society. some interviewees related to this; one provided the following description: at times, i maintained two jobs, at minimum wage, trying to save for school; i was exhausted. while many indications suggest that the act of transition leads to mental health problems among exor, other perspectives were also proposed. some interviewees argue that individuals who moved out the orthodoxy had a priori a pre-disposition for developing mental health problems. it is possible that a tendency of being contemplative and restless engender doubts in god as well as dissatisfaction with one’s existence. one interviewee proposed the following evaluation: this is an egg and chicken situation, what came first? did mental problems develop after moving out, or did individuals choose to move out because they carried some burden of mental problems. another interviewee provided the following explanation: the transition is not an arbitrary event; it can be associated with specific personal traits. it is possible that those who are mentally fragile find it more difficult to remain in the orthodox community. while, as indicated above, most participants believed in some sort of linkage between mental problems and the transition process, two interviewees expressed a different approach. they claimed that the act of leaving the orthodox community involves rebellion, courage and mental strength, and therefore, exor would be equipped with mental robustness: by definition, these guys should be mentally strong; they made a journey which requires great courage. exor that i know, are aware of their goals, and don’t break down when encountering problems. this perception that exor are equipped with intrinsic mental strength calls for optimism about the capability of exor to deal with their problems. it suggests that, with the appropriate help, exor will eventually overcome the problems inflicted by the transitional state. this was very nicely expressed by one the interviewees: i am taking care of myself, i am not hiding from my problems, i am coping with them. i talk about them. i am not afraid. tendencies of ex-orthodox to engage in hazardous behavior risky behavior is often associated with younger persons. individuals in their late teens or early twenties can behave in ways that affect their health and even lead to fatalities.25 therefore, it was not surprising to learn that exor often engage in activities that may jeopardize their health. this was expressed by interviewees in comments such as: [qualitative research in medicine & healthcare 2019; 3:8051] [page 35] article no nco mm er cia l u se on ly some exor live on the verge, they go to dangerous places, drive dangerously, do drugs and some of us try everything: drugs, extreme activities, weird experiences. it appears that drug use is common among some exor, yet, interestingly, excessive alcohol consumption was seldom mentioned as a risk factor for exor. when asked specifically, participants suggested that this, indeed, is not a common practice among exor. this may have some deeper roots related to attitude of jewish people, in general, to drinking.26 on the other hand, exor appear to embark on dangerous trips: there is this practice of leaving for field trips in the desert without previous preparation, without taking enough water supplies. a popular destination for exor is the sinai peninsula, an egyptian territory plagued by terrorist activities: all my friends often spend time in the sinai peninsula; they are not concerned about the isis threat. it could be argued, rightfully, that dangerous behavior of exor could be attributed to the fact that most of them are in their early twenties, an age where individuals of all sectors may be prone to dangerous behavior. this was indeed expressed by one of the participants: drug use is not necessarily specific to exor. all this is very individual; some will engage in a very normal lifestyle, others will act dangerously. the relative contribution of age vs the transition process to engagement in dangerous practices among exor remains open. nevertheless, interviewees suggested that the experience of moving out from the religious world bears some elements that enhance attraction to danger. some inherent characteristics of exor, such as curiosity, rebellion and willingness to break boundaries allowed them to make the transition from religiosity to secularity, and at the same time could enhance experimentation with drugs and extreme activities: these are ‘searchers’, they seek mind changing experiences, new excitements. in addition, the act of moving out harbors a feeling of newly acquired freedom, which can eventually lead to attempts to break additional boundaries: they feel that everything is open for them, no one can tell them what to do, they had enough of being told what to do. another motive relates to the use of drugs as a way of coping with the hardships of life after moving out the familiar religious community: they went through a major crisis, and are trying to recover through drugs and they need something, to ease their daily burdens; they want to be anesthetized. in summary, dangerous conduct and substance abuse appear to be present in the lives of exor. this could be a simple manifestation of the fact that most of them belong to an age group that can be affected by such habits, or to the fact that they experience some sort of delayed adolescence. nevertheless, the experience of moving out from the orthodox society appears to enhance such practices. difficulties in adopting healthy sexual practices young individuals who leave the orthodox society could be unprepared to deal with sexuality, as it is expressed in the secular society.27 this could stem from the strict separation between males and females in the orthodox society during childhood and adolescence, from gaps in sexual education, as well as from differences in the perceptions of sexuality by the orthodox and secular communities.28 sexual education is not part of orthodox school curricula, and is provided only prior to marriage, focusing on its reproductive aspects. thus young adults who leave orthodoxy prior to getting married are often highly ignorant about sex, and those transiting after marriage have received a very one-sided education. another serious problem relates to the continuous emphasis on chastity and premarital abstinence in the orthodox world. sex is sometimes described as dirty and sinful, as expressed by one of the participants: where i came from, sex was perceived as vulgar, animalistic. talking about sex was not dignified, nor legitimate. this can lead to feelings of guilt related to experiencing natural sexual attraction: i was sure that i was a real pervert when i felt attraction to good-looking women. moreover, certain orthodox groups put high emphasis on prohibiting masturbation, and this is an additional source of frustration and stress: from the age of 13 they tell you, again and again, that masturbation will get you to hell. there is this book which describes the specific tortures that await those who have sinned by masturbation. all these elements contribute to the mental health problems described above, and at the same time lead to major difficulties in sexual acculturation. these difficulties can be manifested in two ways: hazardous promiscuity on one hand, and refraining from sexual activity on the other hand. the sudden freedom from sexual restriction can be very confusing. exor can be overwhelmed by the new sexual possibilities, and engage in very promiscuous practices: once you left the religious environment, you feel that everything is permitted, no prohibitions, no restrictions. this could involve unsafe behavior and exposure to stis: for some exor sex plays a dominant part in the transition process; they take part in orgies, practice unsafe sex, and catch sexually transmitted diseases. a very serious aspect of this behavior could result in harming other people by misreading the unfamiliar sexual codes of the liberal society: they didn’t know what was happening on the other side of the river, they don’t understand the rules of conduct. this can have serious outcomes and even lead to harassment and sexual misconduct, directed by exor towards others: some exor are confused about the signals that they get, and this can result in unintentional sexual harassment and assaults. the encounter with the unfamiliar secular world can also lead to some sort of sexual impairment. life in the orthodox community can harm the ability to build healthy interactions with secular members of the opposite sex: women are strange and forbidden creatures; they came from a different planet. exor can therefore reach adulthood [page 36] [qualitative research in medicine & healthcare 2019; 3:8051] article no nco mm er cia l u se on ly with very limited sexual experience, and find it very difficult to overcome this gap: exor will be willing to learn many new things, but not when it comes to sex, they would rather run away. they cannot risk the shame of failure. it should be noted that while many interviewees described difficulties in adopting healthy sexual practices, they also noted that with time, exor will find trustworthy partners and engage in satisfying relationships. discussion our content analysis of 12 interviews with young exor allowed us to identify the major health concerns of individuals that left the orthodox world. these interviews enabled the interviewees to open up and disclose their attitudes and experiences in a way that most probably could not be achieved by other methodologies (our attempts to conduct focus groups discussions have failed to provide valuable information). moreover, the analysis of the transcripts presented complexities that are difficult to achieve by non-quantitative methodologies. analysis of the interviews indicates that exor are affected by problems related to mental health, sexual health and risky behavior. such problems are, obviously, not unique to the exor community. the qualitative nature of this study does not allow quantification of the prevalence of these problems among exor, and comparison to other populations. nevertheless, careful content analysis of the interviews provides many indications that the process of transition from the orthodox community to the secular society can trigger undesired effects on wellbeing and health. moreover, analysis of our findings could point to a more generalized phenomenon, underscoring the possibility that the process of transition per-se could lead to the health vulnerabilities described here. the secularization trajectory can be divided into three stages: the pre-transition stage, the transition stage and the post-transition stage. each of these steps may have notable health impacts. mental health problems can arise from the emotional struggles experienced prior to making the move, from the stress related to the transition itself, and from the anxieties associated with acquiring a new lifestyle. problems related to sexual health can arise from the unpreparedness to sexual conduct in the secular world, as well as from the willingness to embrace the newly acquired sexual freedom. substance abuse can be related to the desire to break all boundaries, but also to the hardship of dealing with daily life in an environment where family support was lost. the transition process of exor brings to mind three other transition processes: i) immigration: the immigration trajectory resembles the secularization trajectory, and can also be divided into the pre-transition stage, the immigration stage and the post-immigration stage of resettlement. each of these may have impacts on health. ii) disclosure of sexual orientation for lgbt people: coming out can also be divided into three phases: the pre-decision struggle, the act of the coming out, and finally the phase of adaptation. these steps are again very strenuous, and could have an effect on health. iii) the natural process of growing up or more specifically moving from adolescence to adulthood is basically a transition process. this process is defined by a troublesome pre-transition state, namely adolescence, and the transition into young adulthood which can be stressful as well. the major observation in this study is related to the mental health difficulties of exor. similar difficulties were reported for immigrants, lgbt people and young adults. a large body of research has been dedicated to mental health problems of immigrants, which include panic attacks, sleeplessness, and depression, mood and anxiety disorders.29 moreover, like in the case of exor, the contributing factors to mental health problems among immigrants could include loss of one’s social network, disruption of family ties, harsh living conditions, and difficulties in acculturation and adaptation.30,31 opinions on suicide risk among immigrants are divided: some studies report low rates of suicidal attempts among immigrants, while other studies suggest higher rates as compared to native populations.32 this uncertainty is compatible with the non-conclusive indications about suicide found in our interviews with exor. mental health problems are also characteristic among lgbt people. non-heterosexual populations have been found to experience a considerable prevalence of depressive episodes and high rates of anxiety, stress and suicide attempts.33 this has been associated, among other factors, with a unique challenge: deciding if, when, and how to reveal to others one’s sexual orientation.22 prevalence of mental health difficulties has been well documented for young adults. early adulthood is a period marked by physical, mental, and emotional changes. it is also during this time of life that the onset of mental health disorders often occurs.34 the other notable observation in our study relates to the tendency of exor to engage in risky behavior, manifested mainly by substance abuse and undertaking dangerous trips. this again parallels behaviors associated with immigrants, lgbt people and young adults. it is well accepted that the most characteristic aspect of health vulnerability of young adults, especially males, relates to risk taking. violent death, either self-inflicted, or caused by homicide are prevalent at this age,35 and so is the tendency for reckless driving, excessive drinking and use of addictive drugs.36,37 risky behavior manifested by substance abuse and alcohol consumption is also reported among certain immigrant groups,38,39 as well as among lgbt individuals.40 this suggests that transition processes may have similar effects on the be [qualitative research in medicine & healthcare 2019; 3:8051] [page 37] article no nco mm er cia l u se on ly havior of exor, immigrants, lgbt people and young adults. the third motif revealed in this study is the effect of secularization of exor on sexual conduct. in this aspect one could also find resemblance to other populations in transition. meta-analysis indicates that immigrant acculturation may promote multiple sexual partnerships, stis and unsafe sex.41 statistics also show that men who have sex with men have a higher risk of contracting an sti.42 in addition, sex related problems are quite prevalent among young adults.43,44 this could be related to the tendency to act carelessly among young adults (see above), as well as to the age-related desire for sexual experimentation, leading to unsafe sexual practices. another motif that appears to characterize populations in transition is the association between vulnerability and resilience. some interviewees in our study stressed the role of resilience of exor in coping with their difficulties, suggesting that stress and resilience are not necessarily contradictory. studies on immigrant populations,45 sexual minorities46 and college students47 suggest a continuum, or even partnership between vulnerability and resilience. individuals in transition appears to mount responses that allow them to survive and even thrive despite stress.46 resilience models suggest that individual characteristics and the encounter with stressful challenges can both enhance competence.48 exor, as well as individuals who decided to immigrate, or to accept their sexual identities could be equipped with inherent resilience, which is then enhanced by the challenge of coping with the difficulties of transition. in these cases individual resilience could be seen as a part of community resilience. taken together, all these comparisons suggest a correlation in the health outcomes of different processes of transition: moving out from the orthodox world, moving from adolescence to maturity, moving from one territory to another, and moving from denial of sexual orientation to its acceptance. it appears that all these transitions take a toll on mental health, sexual health and responsible behavior. limitations: in this study, we choose to address people that moved out from the orthodox word before the age of 30 years. this is a well defined group in the israeli society, with common social and ideological characteristic, and with notable representation in the general population. our choice could have obscured the difference between the effects of young age and the effect of transitioning. the ideal way to solve this is to conduct a similar study with older exor. this however is not trivial. moving out at older age occurs rather sporadically, those individuals are less accessible and the reasons for transition are probably more variable. in addition our study could suffer from a participation bias: the notable interest of our interviewees in health problems, and their willingness to open up can result from an inherent bias. one could claim that: individuals preoccupied with health and more secure about their status were more likely to take part in this study. conclusions in summary, our findings regarding health concerns of exor suggest that this population is a potential health vulnerability group, and requires the attention of the health authorities. in addition, a comparison of our findings to findings regarding the health of immigrants, young adults and lgbt individuals draws the attention to a more generalized phenomenon. one could claim that the process of transition per-se can trigger health problems, and create vulnerability. we recommend that this consideration be added to the list of considerations that guide health professionals in identifying populations at risk and addressing their needs. 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[qualitative research in medicine & healthcare 2019; 3:8051] [page 39] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2018; 2:7792] [page 165] introduction the definition of patient-centred care is fluid. there is talk of a discursive turn away from paternalistic medical authority. however, what we are turning to is a little harder to define. in both practice and research, it is variously labelled person-centred, person-focused and patient-centred care.1-3 the diverse interpretations range from being responsive to the individual needs of patients in clinical decision making to actively involving patients in the decision-making process.4 some describe patientcentredness and involvement as a goal for healthcare delivery while others construct it as a means to improve healthcare.4,5 the confusion surrounding the meaning of patient-centred care leaves a gap between values and practice.3,4 this gap is partially created by the different ways the concept of patient-centredness and involvement are used and adapted to fit in with existing institutional priorities like organisational or financial efficiency.4 the lack of consistency in the ascription of meaning to the concept makes the practice of involvement and patient-centred care ambiguous.4,5 in this paper i aim to show how this ambiguity becomes practice whereby healthcare professionals both deviate from, and conform to, institutional guidelines and also reconcile the conflicting logics, which lace the involvement practices that are available to them. i adopt a dialogical communication perspective inspired by mikael bakhtin whereby meanings are understood to be produced in the interplay between different voices. voices are in this paper a theoretical concept encapsulating how perspectives, values, habits, ideologies etc. are negotiated and construct a multivocal, unstable and unfinalizable unity of meaning.6-8 through a dialogic lens, i look at how involvement is constructed in narratives of health professionals. i draw on a social constructionist view of communication as constitutive of social reality, including knowledge, identities and social relations6,9 and narratives as a communicative site where we construct and ascribe meaning to practice.7,10 i examine how the interplay of different voices ascribe meaning to the dialogic construction of patient involvement in patient-centred neurorehabilitation jannie uhre department of communication and arts, roskilde university, denmark abstract this paper explores how the practice of patient involvement in neurorehabilitation is constructed in tension-riddled professional narratives. i adopt dialogic communication theory to focus on how involvement is constructed across different roles and voices. my analysis is based on an action research project that uses a dialogical communication perspective and participatory methods to explore patient-centred care through the eyes of healthcare professionals. i argue that patient involvement is constructed as a demanding process that requires memory, presence, communicative abilities and temporal understanding of personal needs. these requirements are not explicit in the situated institutionalized practices. as well, i show how the available involvement strategies are laced with taken for granted characteristics, which fall short in the situation that arises when patients do not have the ability to participate or play the role of an active patient. the findings in this paper contribute to the growing literature on patient-centred healthcare by empirically investigating how the discursive configuration of patient, health professional and institutional practices intertwine in producing certain inherent expectations, habits and taken for granted perspectives in care delivery. i also suggest that the findings can usefully be incorporated into patient-centred care design and organizational strategies in order to take into account both the patient, relatives and healthcare professionals as vital for creating a patient-centred practice, organization and professional environment. correspondence: jannie uhre, department of communication and arts, roskilde university, univeristetsvej 1, 4000 roskilde, denmark. e-mail: janniekristine@gmail.com key words: patient involvement; patient-centred care; dialogic communication; neurorehabilitation. conflict of interest: the author declares no potential conflict of interest. funding: funding from region of zealand, denmark. received for publication: 30 august 2018. revision received: 19 december 2018. accepted for publication: 19 december 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright j.k. hoffmeyer uhre, 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:165-175 doi:10.4081/qrmh.2018.7792 qualitative research in medicine & healthcare 2018; volume 2:165-175 no nco mm er cia l u se on ly situated practices of involvement and form identities tied to the enactment of involvement in a healthcare setting. my guiding research questions in this paper are: how is patient involvement constructed between different voices representing organizational habits and values, patient-centred values, personal experiences and more? what does this construction of practice require of the patient? the purpose is to gain insight into how patient ideals and expectations towards the patients are negotiated in professional practices of involvement when the patient cannot meet the inherent demands. in the paper, i examine the articulation of challenging involvement processes in the field of neurorehabilitation. i look at how the patient and healthcare professional are constructed in the involvement practice and how each professional doubt or choice is based on a negotiation of voices in practice. with respect to contributing to practice, the aim of the analysis is to further sensitivity towards the habits and taken for granted notions that might hinder a process of involvement that, along holistic lines, is personally tailored to the needs and values of the individual patient. with respect to contributing to the research literature, the aim with the analysis is to show how the discursive ambiguity of patient-centred care has consequences for the construction of and legitimization of patient-centred involvement practices. furthermore, this paper contributes to research on patient-centred healthcare and dialogical health research by focusing on how healthcare professionals dialogically construct patient involvement in relation to patients suffering the effects of traumatic brain injury. the paper is structured as follows. first, i present a short review of literature that outlines some of the discrepancies in the discursive movement towards patient-centred care and the production of patient involvement practices. i then outline the dialogical framework and present the methods used to co-produce the professional narratives that form the empirical material. this is followed by the dialogical analysis of two professional narratives. finally, i discuss analytical results with respect to both the existing research literature and the field of practice. what is patient-centred care and involvement? patient-centred care and involvement have been high on the political agenda for the last twenty years both in europe and in denmark.11-14 in line with this development, there is a growing body of research describing the turn towards patient-centred care and how multiple interpretations of the concepts flourish having consequences for patients and the healthcare sector as a whole.13-15 several studies have shown the discursive development where patients are constructed in the tension between being a service consumer and a responsible active patient.13-16 explorations of governmentality perspectives have shown how these different health strategies deploy different technologies of agency and performance.15 this discursive figure becomes a patient role infused with accountability and moral tones that emphasizes the responsibility of the individual patient for contributing to the quality of their own healthcare.9,17 studies show how a patient-centred perspective is merged with existing perspectives in healthcare institutions.18,19 this might be beneficial in some cases, but in other cases, the result is overlapping and contradictory ideologies in play at the point of care delivery. this creates discrepancies between public, political, and professional expectations when the organizational capability to adapt or transform does not measure up.18,19 some shared markers of the patient-centred agenda are a focus on the patient perspective and context when making decisions on treatment plans. there is also a core focus on communication with regards to reaching a shared understanding and involving the patient in determining the right care option.4,20 the process of delivering and producing patient-centred care is based on the encounter between the patient (and next of kin) and the health professional.19 there has been a significant amount of studies focusing on patient stories and unravelling the patient position in these encounters.20,21 these studies are important to understand the relational power that is inherent to the encounter. they often involve a critique of the health professionals’ abilities to practice care centred around the patients’ wishes and needs.20-22 in communication studies on patient-centred care, there has been a focus on shared decision making in the relationship between patient and healthcare professionals.4,21 several studies analyse the communicative tensions that can arise between patients’ and healthcare professionals’ priorities in the delivery and decision-making processes in patient-centred healthcare.20,21 in these encounters, slight differences in the communicative practices can distinguish participatory efforts from paternalistic practice.17,23 the expert role of the healthcare professional creates a communicative situation where his/her knowledge and interpretation of events and symptoms are privileged.23,24 in this line of research, the shared nature of decision-making becomes a parameter of patient-centred communicative practice. these studies assume that the patient masters the communicative skills that it takes to participate in the shared decision-making in communicative practices.17,25 other underlying assumptions connected to the patient-centred production of care are cognitive abilities like memory, processual thinking and information processing.17,25 one study reviewed literature to define patient-centredness and patient involvement in stroke-care. among other conclusions, they found communication to be both an important barrier to, and a vital component in, patientcentred practice.20 for stroke victims as well as patients with traumatic brain injuries, communication can be complex. injury to the brain often leave patients with communicative impairment that becomes an inclusion or exclusion mechanism in patient-involvement.20,25 the literature shows that health professionals have a tendency [page 166] [qualitative research in medicine & healthcare 2018; 2:7792] article no nco mm er cia l u se on ly to ignore the patient with communicative impairment and instead orient their efforts towards the next of kin.20,25 the specific difficulty in practising patient-centeredness in relation to stroke victims is determining the individual needs of the patients within the process of regaining consciousness, motor-function, memory and other cognitive abilities. literature on the subject suggests alternative methods of engaging the patient with eye contact, respectful listening and in-depth explanations in regards to activities and prognosis.20 involvement is depicted as a practice that requires the patient to participate, communicate and understand their personal needs to be involved in the health process.25 these requirements prevent some patients from being involved and including their perspective in collaborative decision-making about the treatment process.20,25 a study by lord and gale (2014) shows how patient-centredness and involvement were constructed as a core value in the strategic views on designing service delivery but were difficult to articulate into practice. the study shows that organizational habits, the professional knowledge system, and institutional structures formed barriers to a patient-centred way of thinking and practice development. one of the findings of the study is that patient knowledge or subjective experience is devalued in the process of objectifying care delivery.4 this problematizes how different knowledge forms vary in status in the health system. they found that the professional knowledge forms were favoured on the strategic level of the organizations. they also found that this were more pronounced when decisions were made at an distance from the everyday practices of care delivery.4 a study by mjølstad et al. (2013) shows how accumulated personal history gathered by general practitioners does not translate into rehabilitation activities. the authors found that the institutional voice of medicine has a tendency to override the patient’s personal narrative when planning rehabilitation.3 this happens even though the health professionals want to practise patient-centred care, and to some extent, think that they are doing so. a recent study investigates how patients are constructed in a danish communication program.26 this study shows how six patient figures are formed in the communication program and how they shape the self-understanding of healthcare institutions. pors26 (2016) shows how health communication efforts create a patient role suspended in a tension between market and care perspectives and these different rationales create an organization that interweaves standardized processes with individualized care. these patient figures all have a common understanding of an active and information-seeking patient. the patients are seen as resources in the organizational effort to improve quality through patient-centred care. the study also outlines the absence of the patient who is inactive/passive and refuses information. one of the interesting perspectives in this study is that pors finds that there is no language for describing the inactive or incapable patient. this leaves a void for the patient who cannot fill this role. this is also demonstrated in the professional narratives presented in this paper. to sum up, studies show that policy, strategy and intervention can be designed to promote patient-centred involvement but this does not necessarily translate into care delivery in practice.4,20 the barriers identified are linked to the lack of a common definition of patient-centred care and practice. patient-centred practice appears to be a professional ideal more than an clinical reality.3 in this paper i look at how involvement is translated into practice and how these practices become challenging when collaborating with patients suffering effects of traumatic brain injurie that prevent them from filling the role of the normal and active participants in their own treatment process.17,24,25 analytical framework a dialogical communication approach in this paper, i embrace the notion of a narrative kind of knowledge.10,27,28 i see narratives as chains of past events organized to construct meaning in relation to the events but equally in the current relational context. in this sense the narratives are performative in creating understandings of our past and meaning in the present.7,28 many narrative studies in healthcare present the clinical communication encounter and critically examine how patients and healthcare professionals construct different types of narratives.29-31 the focus is primarily on the patients’ narratives as a source of knowledge.10,31 in this paper, i choose to look at the narratives of healthcare professionals to show how the health professionals navigate contradicting perspectives in patient-centred healthcare. i adopt a discourse analytical approach building on dialogical communication theory developed by baxter6 (2011) and phillips8 (2011). the branch of dialogic communication theory i draw on in this paper stresses the discursive nature of professional narratives and their constitutive function in ascribing meaning to the world.7 with this dialogic perspective, i focus on the different and often contradicting voices that make up the narratives. this builds on the basic principle that narratives are a dialogical expansive genre32 and a way to organize and ascribe meaning to the world and our different identities in the world.10,28 dialogue in this perspective is viewed as the relational negotiation of different voices in the process of ascribing meaning to the world.6,8,33 in this perspective, narratives help shape practice through the meanings they ascribe to practices including involvement and patient-centered care. i see the narratives of healthcare professionals as a valuable source of innovative knowledge that stems not just from one but from several encounters with patients.10,34 i find that their perspective can be enlightening and provide key information into how patient-centred practices can be improved.19,34 this is founded on a premise that health professionals through narratives make sense, construct and conceptualize patient-centred care and involvement [qualitative research in medicine & healthcare 2018; 2:7792] [page 167] article no nco mm er cia l u se on ly in relation to the patient and colleagues as an integral part of their everyday professional practice, shaping what they do as they do it.7,28,34 the branch of dialogic communication theory that i apply in this paper draws on bakhtin’s dialogue theory to examine the production of meaning as it emerges through the interplay between multiple voices.8,33 in other words, all communication is viewed as dialogic as meanings are formed within and across voices.6,8 the voices are not understood as the individual´s uttered speech. inspired by bakhtin, a voice is conceptualized as a perspective, ideology or discourse that interpenetrates an utterance and constructs a multivocal, unstable and unfinalizable unity of meaning.6,8 a dialogic communication analysis captures the multivocal negotiation of meaning in communication. the dialogical communication approach i follow in this paper builds on the social constructionist premise that social knowledge, subject positions and actions are constructed in discourse.9,35 discourse is seen as a historically, culturally and geographically situated perspective from which meaning is ascribed to the world.8,35 in a bakhtinian terminology, communication as dialogue is constitutive for the continuous construction of identities through the interplay of different voices.8 the dialogical approach i apply in this paper offers an analytical lens that view the relational co-construct of ourselves and others in the meaning making process.6,8 in this perspective i also view disability as a dialogical construct constituted in communication (discourse). this entails that the functional and/or cognitive impairments suffered by patient with a traumatic brain injurie are not fixed medical categories (if such exist) but gain their meaning in different social context.5,24,36 the social context of this study is a neurorehabilitation process situated in the institutionalized healthcare settings in denmark. the dialogical approach is a way to see how contradicting discourses (voices) are at play as the disabled patient and the health professional roles are constructed interdependently24 in the situated institutionalised practise of patient involvement in patientcentred care. my analytical focus inspired by bakhtin homes in on the utterance as the communicative site of this interplay between voices.7 the utterance is a broad definition that spans from a single sentence to a longer text. in this paper, the utterances that i examine are two professional narratives that deal with the experience of involving a patient suffering effects of a traumatic brain injury. in each utterance, multiple and conflicting knowledge forms, rationales and perspectives come together to form an unstable unity. to help identify the different voices articulated, i draw on baxter’s analytical framework6,7 to look for discursive markers and discursive micro practices that potentially signify discursive counterpoints in the narratives. specifically, i focus on discursive markers present in the synchronic interplay between co-present voices that intersect in each of the narratives.6 in the narratives presented, the synchronic interplay between voices can be described as polemic. the polemic interplay is characterized by a struggle between conflicting discursive positions. features of a polemic struggle are among others the discursive markers countering and entertaining.6 countering marks a discursive counterpoint by replacing an expected discursive position with an alternative one. entertaining marks a polemic interplay where multiple possible discursive positions are possible. in connection to the two discursive markers, there are a long list of discursive micro practices signified by different lexical choices.6 in my analysis of the narratives, each micro practice identified will be explained in context. to further explore how meanings are produced in the interplay between different voices i look at the relations between the voices. this means i look at how dominant the voices representing a more normalized perspectives and more marginalized voices intersect in the construction of meaning.8 in the narratives there are several voices infusing the construction of involvement, the role of the patient and role of professional. the multivoiced negotiation forms tension-filled narratives that i will analyse by addressing the questions: what voices are articulated in construction of involvement in neurorehabilitation practices with complex patients? what identities and expectations are constructed in the different voices animating the practice of involvement? materials and methods action research and workshop design the empirical material i analyse in this paper has been produced as part of an action research project. the action research project aimed to produce knowledge about patient-centred care in neurorehabilitation with a focus on cross-sectorial teamwork and patient involvement. the project involved healthcare professionals from both an outpatient hospital unit in region zealand in denmark and some of their cross-sectorial colleagues from the surrounding municipalities. the project was designed collaboratively in an ongoing decision-making process between the participants and researcher. the action research project was built on the ideal of participation being voluntary and participants being given the role as co-determinants throughout the process.37 i (the researcher) initially invited the participants personally and they were chosen because of their work in cross-sectorial collaborations within the field of neurorehabilitation. the action research project involved several different collaborative and qualitative research efforts. one of the key elements of the project was three dialogical workshops held in the autumn of 2015. in this paper, i draw on data from the first of three workshops. eight healthprofessionals from different municipalities and hospital services participated. the theme of the workshop was [page 168] [qualitative research in medicine & healthcare 2018; 2:7792] article no nco mm er cia l u se on ly the challenge of patient involvement in neurorehabilitation. it was chosen in collaboration with the workshop participants and reflected a subject matter that was both relevant and meaningful for the participants to work with and develop. the workshop design and the facilitating role in the workshop were delegated to the researcher (author). in the workshop, the participants and i (the researcher) co-produced knowledge about problems, practices, quarrels and values of patient involvement based on the participants’ joint experiences of working with patients who had suffered a traumatic brain injury. the workshop was based on narrative exercises. the exercises were designed specifically for the workshop and drew on empirical material collected prior to the workshop. these data consisted of interviews and observations with participants, their cross-sectorial colleagues and patients suffering the effects of traumatic brain injury the workshops were dialogical in the sense that all the narrative exercises were built on dialogical principles inspired by mikhail bakhtin. bakhtin saw difference as a force of change because he theorized that meaning is produced in the interplay between different perspectives (voices).8 in the workshop design this principle was directly adapted as the participants were encouraged to explore their differences and inquire into each others’ motives and understandings of the practice of involvement. the design was focused on the participants’ own choice of subjects as well their choice of narratives. this means that the narratives presented in this paper were produced in conversation and not limited to a rigid framework of questions.7 the participatory narrative focus gave the health professionals a space to share their perspectives on patient involvement and engage in co-producing new perspectives on various situations that challenged their own perceptions of their professional practices. the narratives presented in this paper were selected as they prompt multivoiced co-reflection between the participants within the workshop. they also reflect some of the core problems or challenges described by the healthcare professionals during the action research project. to preserve the anonymity of the participants i have altered identifying details in the empirical excerpts. the interaction in the workshop was audio recorded and transcribed. the analytical focus is to unfold the tension that the narrative holds within itself to show how meaning is ascribed to situated practices of involvement and how professional navigate contradicting perspectives on patientcentred care in their everyday work routines. my motive for designing a workshop with a narrative focus was a conviction that narrative abilities can be learned.38 this is anchored in two perspectives. one is the notion of dialogical wisdom, drawing on barge and little (2002),39 understood as a sensitivity towards positions and opportunities in an encounter. the other is the notion of narrative competence, drawing on frank (1998),27 that nurtures the ability to see patterns in life stories. collectively, the workshop participants and i found these perspectives to be relevant especially when it comes to patients who are suffering complex and life changing illness.3 the purpose of the workshop was not to design a solution but to enable collective reflection on problems that were shared between participants across their different contexts. our co-inquiry focused on both practical aspects of patient involvement and the participants’ reflections on how their practices mirrored or diverted from the situated ideals of involving a patient. this study has limitations in the small number of participants and their occupations. the results are not generalizable or representational in the statistical sense. instead, the results show tensions present within the fields of neurorehabilitation and patient involvement that may be recognizable to other health professionals within the field of practice.40 this recognition gives the results applicability. qua this applicability, qualitative and participatory research can, in my opinion, serve as a powerful change-agent in the turn towards patient-centred care delivery and quality improvements for both patient and professionals.10,19,34 analysing the practice of involvement with complex patients the following analysis aims to show how involvement is ascribed meaning in two different professional narratives and examine how professionals negotiate and reconcile the discursive ambiguity in patient-centred healthcare. all the narratives describe situations where the practice of involvement became a professional challenge. the narratives are based on professional experiences in the systemic context of cross-sectoral coordination and neuro-rehabilitation work in denmark. each of the professional narratives contributes with different perspectives on the dialogic construction of involvement and demonstrates how the construction of the patient and the professional is an integral part of the situated involvement practices. the narratives are told from a professional perspective and the voices that might have been introduced by e.g. patients or managers are therefore not present in excerpts. the analysis contributes by investigating how involvement is constructed from a professional perspective. further, it reflects on practical limits of patient involvement in patient-centred neurorehabilitation that are constructed in the discrepancies between contradicting voices in practise. patient involvement – but he has some cognitive injuries the following excerpt unfolds a professional narrative that describes the process of involvement for a young man. the example shows how the apparently normal young man, through his reduced ability to remember, is constructed as unable to participate appropriately in the institutionalized practice of involvement. the context of the narrative is the municipal health and social care sys [qualitative research in medicine & healthcare 2018; 2:7792] [page 169] article no nco mm er cia l u se on ly tem. in denmark, the municipal system provides help and services for citizens who are unable to provide for themselves financially and/or socially. in this case, the young man is recovering from a traffic accident in which he acquired a brain injury. due to his injuries, the process of involving the young man is a professional challenge: ursula (municipality): “this young guy is apparently healthy and anyone would say, ‘you’re fine’. but he has some cognitive injuries and there’s some damage to his frontal lobe, but he fools both us, himself and others because of his seemingly normal behaviour. and he doesn’t do it on purpose. but over time, we can see that all’s not well. but when it comes to involvement. actually, i have to involve him. but i quickly find out, that it doesn’t work because he has a memory like a sieve. so gradually the involved party becomes his mother. because she also notices that it isn’t completely coherent. so this leads to him getting less and less involved because i have to communicate everything with her. and i sometimes have a moral struggle like, what am i doing? and if i were to follow the law, then i would have broken it 17 times. but to benefit his case and to benefit his situation and to make the system work for him, we have pushed him more and more onto the sideline.” (quote from workshop 1) the first four sentences set the scene for the professional dilemma. they do so by constructing the young man as abnormal through entertaining a polemic discursive context.6 in the intro, two voices are entertained in dialogue the voice of normality and the voice of neurohealth professionalism. the voice of normality draws on a wider discursive understanding of being normal. this discursive resource is introduced through a naturalization practice.6 this micro practise enters the voice of normality into the narrative as a transparent category representing a given way of being a patient in the systemic context. the voice of normality serves as a backdrop from which the boy is constructed as an opposite. the young man is introduced as “healthy” and “seemingly normal”, but he fools everybody. the words “normal” and “healthy” in conjunction with words like “apparently” and “seemingly” make the statements about his appearance more tempered and indicate other dialogic alternatives. the alternative in this case being that the young man diverges from “normal” due to his injuries. through the mention of neuro-professional concepts such as “cognitive injuries” and damage “to his frontal lobe”, the voice of neuro-health professionalism introduces a knowledge form that is expressed in language, which conceptualizes the young man’s divergence. this voice introduces an understanding of his injuries by explaining how “he doesn’t do it on purpose”. the voices of normality and neuro-professionalism align in polemic interplay to co-construct a position where the young man diverges from the normal as a neuro-impaired patient. in the dialogic construction of the other – in this narrative, the young man – the dialogic self or in this case, an “us” is constructed as a counterpart. the young man in this story requires both care and diligence from “us”, the professionals, as he unintentionally “fools both us, himself and others”. this constructs a professional us that sees the divergence and the injuries, but only “over time”. the temporal hesitation stresses both the complexity of the injuries but also hints at a vulnerability in professional practice. the vulnerability in this case is that even the neuro-professional need time to discover and understand how an injury to the brain surfaces and unfolds in the individual patient.5,24 when the contexts and positions are in place, the narrative shifts focus to the practice of involvement. the situated meaning of involvement is negotiated against the backdrop of the above-mentioned voices of normality and of neuro-health professionalism. furthermore, new voices are introduced. in the sentence, “actually, i have to involve him”, involvement is constructed as something that the professionals have to do. the word “actually” indicates a countering practice.6 this mean that the word constructs the following statement as a counterpoint to an expected discursive position. in this case, the sentence counters the expected position of a professional prerogative to choose to involve. this statement draws on a voice of systemic obligation. in this narrative, the voice of systemic obligation is two-fold. the voice asserts its dominance by defining involvement as both a moral obligation “i sometimes have a moral struggle” and a legal obligation “if i were to follow the law”. these two powerful discursive resources align with the voice of normality in synchronic interplay. they co-create an underlying narrative of the right professional choice, which caters to and fits the normal patient. this constructs the main storyline in this narrative as a counter narrative that outlines the best professional choice for the abnormal patient. in this main storyline, involvement is ascribed meaning as a systemic practice that demands certain cognitive abilities. the sentence “that it doesn’t work because he has a memory like a sieve” articulates a voice of neuro-health professionalism. the voice of neuro-health professionalism draws on an understanding of memory impairment as an obstacle to participation in a systemic involvement process. this constructs involvement as a practice that requires memory and the patient as someone who is not capable. in this context, memory exemplifies the ability to participate in a process over time. the inability to remember makes it difficult to maintain continuity in the rehabilitation process rooted in the patient’s wishes and goals. the narrative constructs involvement as a process that is inaccessible for a person with cognitive impairments effecting their memory and their ability to communicate coherently. this construction of an inaccessible process creates the foundation for an alternative practice. in this case, the alternative becomes to involve the mother and [page 170] [qualitative research in medicine & healthcare 2018; 2:7792] article no nco mm er cia l u se on ly consequently push the patient “more and more onto the sideline”. this alternative is made available by a professional position of being the patients’ advocate in the system – “to make the system work for him”. this position is created in an alignment between the voice of neurohealth professionalism and a new voice of patient-centred care. the professional position draws on the voice of neuro-health professionalism to construct an inaccessible process of involvement. the voice of patient-centred care then disclaims the systemic obligation by reorienting the deviating action towards the patient’s benefits – “to benefit his case and to benefit his situation”. the message of the professional narrative becomes that which is best for the patient is not always the system’s way of practising involvement. the analysis addresses the professional experience of a discrepancy between systemic practices and patients’ benefits. this is illustrated in the depiction of involvement as a demanding process that becomes exclusionary. the turn towards patient-centred care in the healthcare system has fostered the systemic translation of concepts like involvement and participation into professional practices. the analysis questions if the situated practices are able to accommodate all types of patients by showing how involvement is constructed around the presumption of a cognitively capable patient. the analysis also shows a duality in the professional decision-making which has to navigate two conflicting orientations: an orientation towards the legal and correct action and another towards the needs and capability of the patient. meeting with or without the patient the following excerpt is a professional narrative about how the process of involvement unfolds during a recovery process. the narrative follows the recovery process of the young man with a severe traumatic injury to the brain. the narrative describes the professional challenge of practising involvement in such a process. the narrative paints a critical picture of how involvement is enacted in the professional practice and outlines the professional doubts about the process. in this narrative, the practice of involvement becomes an opposite to the professional assessment of the situation: amalie (municipality): “and where i’ve faced the challenge in this process of how do i get this totally injured citizen involved in any way? at first, he is not conscious. then he wakes up and becomes a little more aware. he joins in the meetings. he is sitting there. we are addressing him when we say something even though it is actually directed to the professionals. so the situation is a little forced. but at the same time we all agree that it’s really important that he is there because it’s all about him and his life. we always notice that at some point during the meetings he gets really tired. and he starts feeling unwell. and he does not really hear what happens and uhh...even though we talk to him and ask him questions, then...at first it’s not...it’s more because we have to. throughout the rehabilitation process, he becomes more and more aware and starts being able to communicate with expressions of agreement or disagreement. and we keep addressing him and asking him questions at the meetings and he comes up with some form of answer. when he listens during the meetings, he participates by expressing if he finds it good or bad or something else. the main involvement is directed at his relatives, his parents. it’s with them we have a dialogue about what’s going to or has to happen for this boy. because at the meetings it’s really hard to ask him, would you like to live at home? there are often up to fifteen people sitting around the table. and then he’s hungry and he’s thirsty. and do we get an answer we can count on? of course, there is also a legal guardian in place, so of course there are some others who have to be involved in the decision. but i’ve often thought, is it the right thing to involve him in the meetings? and there was actually a meeting where he did not participate. where the roles were completely different. the parents acted completely differently. they said some things they hadn’t said previously. which they would not say when he was there. which was really important for the process. and gave us insight into his state and progression.” (quote from workshop 1) the narrator starts by posing her own question of how to involve. this is a dialogically expansive practice that indicates an openness towards other dialogic alternatives to involving. though the question is expansive towards the practice of involvement it is hinged on two fixed characters – the totally injured patient and the professional involver. the question “how do i get this totally injured citizen involved” constructs a perspective of involvement as process produced by the active professional and challenged by the passive patient. this constructs the patient with little or no agency and pinpoints the challenge of involvement as lying in the patient’s inability to take on an active role. the construction of these roles in the question draws on the voice of patient-centered care as a backdrop. in the healthcare system’s turn towards patient-centered care, the active patient role and the involving professional are central characters in producing better quality in healthcare.19 in this light, the question is asked in alignment with the voice of patient-centred care. it does not question whether or not to involve but is dialogically expansive towards a new perspective on how to involve. the question is followed by a procedural description of the young man’s progression from unconscious to aware to expressive. “at first, he is not conscious. then he wakes up and becomes a little more aware. he joins in the meetings”. his graduation to aware places him in the [qualitative research in medicine & healthcare 2018; 2:7792] [page 171] article no nco mm er cia l u se on ly arena of the systemic practice of involvement, which is centered on participation in meetings. “he is sitting there. we are addressing him when we say something even though it is actually directed to the professionals. so the situation is a little forced”. when the patient cannot participate on the premise of conversational interaction in the meeting, the situation becomes forced. in this section, the meeting is constructed as the setting for involvement and the process of involvement is bound to the conversational exchange and relational engagement performed in the meeting. this construction of involvement is informed by the voice of systemic practice that naturalizes this way of practising involvement.6 this construct the meeting as a given setting for a given relational exchange. in the narrative, this is merely a part of the procedural description and is not questioned. the voice of systemic practice aligns with the voice of patient-centred care in constructing the setting and practices as important by anchoring their legitimacy in patient-centredness – “we all agree that it’s really important that he is there because it’s all about him and his life”. the challenge arises as the patient is not able to engage in the relational exchange in the settings. in the sentence “during the meetings he gets really tired. and he starts feeling unwell. and he does not really hear what happens” it becomes evident that physical presence is not enough to fully perform participation in the institutionalized involvement practice. the participatory performance also entails listening and being alert. the patient is constructed as present but passive. simultaneously the active professional involvers are demonstrated in wordings like “we always notice” and “we talk to him and ask him questions”. in the interaction between the passive, present patient and the active involver, the involvement practice is enacted “because we have to”. this reduction of involvement to a one-way communication loses the legitimacy formed in the alignment with the voice of patient-centred care. instead, its legitimacy is rooted in the voice of systemic obligation (as described in relation to the previous empirical example). as the patient’s recovery progresses so does his participatory abilities. “throughout the rehabilitation process, he becomes more and more aware and starts being able to communicate with expressions of agreement or disagreement”. communicative skills open up the possibility of confirming or negating decisions with the patient – “he participates by expressing if he finds it good or bad or something else”. however, even though he can now answer, his participatory contribution to the involvement process is not fully valid. he still lacks the ability to engage in “a dialogue about what’s going to or has to happen” and to be fully involved he has to be able to postpone bodily needs – “and then he’s hungry and he’s thirsty”. the patient is constructed as a contributor but his contribution is not equal to the professionals or the parents – “do we get an answer we can count on?” “but i’ve often thought, is it the right thing to involve him in the meetings?” the passive patient role becomes a challenging figure in the narrative because the involvement practice is a means to an end. the meetings require participation enacted through presence, awareness and dialogue to co-construct knowledge that holds legitimacy in the institutionalized rehabilitation process. this translates into specific knowledge forms that function as valid components in such a task. “because at the meetings it’s really hard to ask him, would you like to live at home?” the question is oriented towards his future needs and is focused on uncovering his preferences for services provided in the systemic context. the question also speaks to the relational boundaries constructed in the meeting between all parties. in this case, a boundary may be that the young man will not to express a desire to live elsewhere as it could be hurtful to his parents and vice versa. “and there was actually a meeting where he did not participate. where the roles were completely different. the parents acted completely differently. they said some things they hadn’t said previously. which they would not say when he was there. which was really important for the process. and gave us insight into his state and progression.” this final part of the narrative is dialogically expansive by entertaining an alternative discursive perspective. the question of his involvement in the meeting marks the discursive counterpoint. what follows is a narrative within the narrative. in the alter-narrative, the involvement practice that solely focus on patient-centredness as the presence of the patient is challenged by an alignment between the voice of systemic practice and the voice of neuro-health professionalism. these voices form a professional perspective on how meaningful meetings can be constructed by un-involving the patient. this alternative practice is legitimized by reconstructing the relational boundaries that hinder the generation of knowledge that holds value in the professional involvement practice. this is done by connecting the “meeting where he did not participate” to the altered behavior “where the roles were completely different”. this reframes the meeting as meaningful. however, the condition is an altered composition of people. by using terms like “his state and progression” the voice of neurohealth professionalism underscores the value of the altered behavior and thereby the meeting as a meaningful systemic practice without the presence of the patient. the analysis shows how the concept of involvement is infused by the voice of patient-centred care and is therefore presumed to create better healthcare. in this context, better healthcare can be translated into progression in recovery through a coordinated rehabilitation effort.41 in this narrative, involvement loses its professional value when it cannot produce knowledge that can translate into the rehabilitation process. participation is in this case only valued if it aligns with the purpose of producing procedural progression. in the narrative, the meeting is the arena for [page 172] [qualitative research in medicine & healthcare 2018; 2:7792] article no nco mm er cia l u se on ly the relational exchange that produces progression towards better physical and mental recovery through rehabilitation efforts. the meaningful meeting and involvement practice is from a professional perspective anchored in progression and a temporal orientation towards the future process. the knowledge form the patients has access to in the encounter is depicted as anchored bodily and in the moment. this construction of involvement as a procedural tool of progression annuls the patient’s knowledge form and it leaves the professional in a dilemma between practising involvement focusing on the patient or on the process. both constructions of involvement draw on the broader discursive resource of patient-centred care. this institutionalized perspective naturalizes the concept of involvement as a given means to produce better healthcare for the patient. discussion and conclusions in this paper, i have examined how the interplay of different voices ascribe particular meanings to situated practices of involvement and forms identities tied to professional involvement practices in neurorehabilitation. the professionals construct and reconstruct involvement practices in interaction with patients who suffer the diverse effects of acquired brain injuries. my analysis shows that involvement presupposes patient participation. it also shows how the enactment of participation requires certain cognitive resources to be fully recognized and accepted. this particular patient group presents a challenge as brain damage can have the effect of impairing or altering normal cognitive functions.20,22,25 this study contributes to the study of patient-centred healthcare and dialogical health research with a specific focus regarding the professional perspective on patient involvement with a complex group of patients. by inquiring into the dialogic tensions that characterize involvement in professional narratives, the analysis shows how different voices construct and delimit different forms of action and reflection with respect to the enactment of involvement. in the narratives, the voice of patient-centred care is used both to ascribe meaning to institutionalized practices of involvement, but also to legitimize the actions and perspectives that deviate from the institutionalized norms of involvement. this is in line with the ambiguity that previous studies have described.3-5 in this study i highlight how the underlying demands of involvement are animated as a patient-centred practice. my analysis shows how involvement can be nothing less than a meaningful meeting where procedural goals are met. one narrative speaks of engaging with the patient as an alternative involvement technique.20 this engagement does not measure up to the ideal of involvement. this then leads to the health professionals’ reorientation towards the next of kin as they can fulfil the requirement of participation. the patients are constructed and positioned as incapable (disabled).24 this points to an involvement practice where subjective experience is secondary to the goals of objective process.4,17 even though the voice of neuro-health professionalism has the language to describe and ascribe another meaning to the patient, the voice does not challenge the dominant view of patient-centred care practices. the paper is my empirical contribution to the studies that advocate how the patient-centred perspective is merged with existing perspectives in healthcare institutions.18 it also points to this blending of voices as a strong discursive resource that in some cases hinders a more individualized practice of involvement at the point of care delivery. in this paper, i find that the health professionals navigate a tension between the ideal of what patient-involvement should be and how involvement is practised in the institutional setting. the study helps illustrates how some practices are constraining or problematic when involving patients suffering the diverse effects of traumatic brain injury. nevertheless, the narratives also hold an optimism in how the health professional try their best to balance both the perspective of the patient, the clinical outcomes and the institutional values. in the narratives, the voice of systemic obligation functions as both a detachment mechanism and it holds the potential for defiance in the construction of meaning. it holds a recognition that some of the systemic practices are not applicable in the everyday care delivery between the patient and the professional. in the narratives, the voice animates the onset of opposition to the institutional logic of patient involvement being the only correct strategy in creating the best rehabilitation process. i do not see this as the professionals opposing involvement as a strategy but opposing the consolidated practices that are conceptualized as involvement. the consolidated practices being the relational exchange situated in a meeting and procedural knowledge forms that are legitimate in this space.3,17 the narratives describe deviant institutional behaviour that also has the patient-centred perspective in play. confined to the systemic context the alternative becomes to not involve because the dominant practices are naturalized and therefore not in question. with the findings of this paper i propose that the relational nature of patient-centred care becomes the focus of co-producing situated involvement measures. this recognizes the need for reconciling different knowledge forms and letting the tension evolve new perspectives that fuse both the patient and the health professionals agenda.3 in practice, this vision is built on an institutional recognition of personal knowledge as the key to generating quality for the individual patient in healthcare and not as a mean to objectify healthcare delivery. in the paper i illuminate how institutional voices make such situated practice unavailable in the relational negotiation of the health professional. the only available alternative is to not involve the patient. this questions the flexibility of the current practices. it also points to a need for reflexive spaces where it is possible to question the naturalized practices and systemic adaptions of involvement. a characteristic of the narratives presented [qualitative research in medicine & healthcare 2018; 2:7792] [page 173] article no nco mm er cia l u se on ly is that they came from a place of doubt or wonder.6 these are both communicative indications of a dialogical struggle. the doubt-driven stories produced tension filled and dialogically expansive arenas for reflexive co-inquiry. in this paper i put forward the notion that a practical starting point for developing new and person-centred involvement practices could be to co-reflect on the professional doubts that form within care delivery. references 1. miles a, mezzich j. the care of the patient and the soul of the clinic: person-centered medicine as an emergent model of modern clinical practice. int j pers cent med 2011;1:207-22. 2. starfield b. is patient-centered care the same as person-focused care? perm j 2011;15:63-9. 3. mjølstad bp, luise kirkengen a, getz l, hetlevik i. standardization meets stories: contrasting perspectives on the needs of frail individuals at a rehabilitation unit. int j qual stud health well-being 2013;8. 4. lord l, gale n. subjective experience or objective process: understanding the gap between values and practice for involving patients in designing patient-centred care. j health organ manag 2014;28:714-30. 5. leplege a, gzil f, cammelli m, et al. person-centredness: conceptual and historical perspectives. disabil rehabil 2007;29:1555-65. 6. baxter la. voicing relationships, a dialogic perspective. los angeles, ca: sage; 2011. 7. baxter la, suter ea, thomas lj, seurer lm. the dialogic construction of “adoption” in online foster adoption narrative...: ebscohost. j fam commun 2015;15:193-213. 8. phillips lj. the promise of dialogue, the dialogic turn in the production and communication of knowledge. amsterdam: john benjamins; 2011. 9. renedo a, marston c. developing patient-centred care: an ethnographic study of patient perceptions and influence on quality improvement. bmc health serv res 2015;15:122. 10. pedersen ar. the role of patient narratives in healthcare innovation: supporting translation and meaning making. j health organ manag 2016;30:244-57. 11. borgermans l, marchal y, busetto l, et al. how to improve integrated care for people with chronic conditions: key findings from eu fp-7 project integrate and beyond. int j integr care 2017;17. 12. borgermans l, devroey d. a policy guide on integrated care (pgic): lessons learned from eu project integrate and beyond. int j integr care 2017;17. 13. vrangbaek k. patient involvement in danish health care. j health organ manag 2015;29:611-24. 14. dent m, pahor m. patient involvement in europe a comparative framework. j health organ manag 2015;29:546-55. 15. pedersen kz, kjær p. “the new patient”: the emergence of a political persona. int j public sect manag 2017;30:85-98. 16. apker j. communication in health organizations. cambridge: polity press; 2012. 271 p. 17. abreu bc, zhang l, seale g, et al. brain injury interdisciplinary meetings: investigating the collaboration between persons with brain injury and treatment teams. 2002; available from: http://www.tandfonline.com/action/journalinformation?journalcode=ibij20 accessed 2018 dec 10. 18. ledderer l. bringing about change in patient-centred preventive care. int j public sect manag 2010;23:403-12. 19. mcdermott am, pedersen ar. conceptions of patients and their roles in healthcare. in: m mcdermott, ar pedersen, eds. j health organ manag 2016;30:194-206. 20. lawrence m, kinn s. defining and measuring patient-centred care: an example from a mixed-methods systematic review of the stroke literature. heal expect 2012;15: 295-326. 21. alby f, fatigante m, zucchermaglio c. managing risk and patient involvement in choosing treatment for cancer: an analysis of two communication practices. sociol health illn 2017;39:1427-47. 22. rosewilliam s, roskell ca, pandyan a. a systematic review and synthesis of the quantitative and qualitative evidence behind patient-centred goal setting in stroke rehabilitation. clin rehabil 2011;25:501-14. 23. falk k, ung ej, östman m. health-care encounters create both discontinuity and continuity in daily life when living with chronic heart failure a grounded theory study. int j qual stud health well-being 2015;10. 24. marks d. models of disability. disabil rehabil 1997; 19:85-91. 25. kontos pc, miller k-l, gilbert je, et al. improving clientcentered brain injury rehabilitation through research-based theater. qual health res 2012;22:1612-32. 26. pors as. constructions of the patient in healthcare communications: six patient figures. j health organ manag 2016;30:279-98. 27. frank aw. just listening: narrative and deep illness. fam syst heal 1998;16:197-212. 28. humle dm, pedersen ar. fragmented work stories: developing an antenarrative approach by discontinuity, tensions and editing. manag learn 2015;46:582-97. 29. davenport nhm. medical residents’ use of narrative templates in storytelling and diagnosis. soc sci med 2011;73:873. 30. charon r. narrative medicine: attention, representation, affiliation. narrative 2005;13:261-70. 31. overcash ja. narrative research: a review of methodology and relevance to clinical practice. crit rev oncol hematol 2003;48:179-84. 32. bakhtin mm. problems of dostoevsky’s poetics. bakhtin in: mikhail mikhaĭlovich mm, emerson c, (firm) p, eds. minneapolis: university of minnesota press; 1984. 33. bakhtin mm. dialogic imagination: four essays. holquist m, ed. austin: austin, tx, usa: university of texas press; 1981. 34. balbale sn, turcios s, lavela sl. health care employee perceptions of patient-centered care. qual health res 2015;25:417-25. 35. phillips l, napan k. what’s in the “co”? tending the tensions in co-creative inquiry in social work education. int j qual stud educ 2016;29:827-44. 36. soffer m, chew f. framing disability among young adults with disabilities and non-disabled young adults: an exploratory study. disabil rehabil 2015;37:171-8. 37. kristiansen m, bloch-poulsen j. participation as enactment of power in dialogic organisational action research. reflections on conflicting interests and actionability zur verfügung gestellt in kooperation mit/provided in cooperation with. int j action res 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[page 174] [qualitative research in medicine & healthcare 2018; 2:7792] article no nco mm er cia l u se on ly 39. barge jk, little m. dialogical wisdom, communicative practice, and organizational life. commun theory 2002;12: 375-97. 40. delmar c. “generalizability” as recognition: reflections on a foundational problem in qualitative research. qual stud 2010;1:115-28. 41. sundhedsstyrelsen. kommissorium for servicetjek af genoptræningsog rehabiliteringsindsatserne for personer med erhvervet hjerneskade. 2017;2014. available from: http:// www.sum.dk/aktuelt/nyheder/kommunale_sundhedsopgaver/2017/februar/~/media/filer dokumenter/ kom-servicetjek-hjerneskadeomraadet.ashxstudie [qualitative research in medicine & healthcare 2018; 2:7792] [page 175] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2019; 3:7943] [page 15] introduction training in translational science aims to help participants transfer fundamental research discoveries from laboratory into clinical practice. decades ago, the national institute of health issued funding mechanisms, referred to as clinical and translational science awards (ctsas) to support university development of a clinical translational science institutes (ctsi) and a cadre of physician-scientists whose research aims are directed at achieving translational science goals. the processes directed towards helping students develop an understanding and acquiring related practices necessary to conducting translational science are not well documented.1-4 translational science institutes across the us support students through tl1 (predoctoral training) and t32 (preand postdoctoral training) funding mechanisms. educational experiences in these training programs have generally focused on cultivating collaboration with seasoned translational scientists while students also take coursework related to team science, translational science models and research ethics. however, studies on the development of translational science educational environments and on the teaching of research ethics are scarce.5 the purpose of this study was to analyze clinical translational science students’ perceptions of their research ethics coursework, through interviews6 and focused groups. a second purpose was to describe how well the course content and instructional strategies aligned with the principles of ethical training as described in the literature. teaching research ethics in translational science dubois et al.7 identified what content should comprise coursework in responsible conduct of research. kon et al.8 also provided a summary of current materials used across clinical translational science hubs. similar to the office clinical translational students’ perceptions of research ethics coursework: a case study linda s. behar-horenstein, huibin zhang school of human development and organizational studies in education, university of florida, gainesville, fl, usa abstract relatively unknown is whether coursework in responsible conduct of research actually achieve the purposes for which it is designed. in this study, the authors report clinical translational students’ perceptions of their research ethics coursework and the alignment between course content as recommended in the literature. we used grounded theory to portray emergent findings across focus groups and semistructured interviews among 31 participants at one clinical translational science hub. we also used thematic analysis to analyze course syllabi. two themes emerged: averting scientific misconduct and responding to ethical dilemmas. students reported that they did not acquire requisite strategies to address research ethical dilemmas. one of the course syllabi indicated the provision of active learning opportunities. however, the findings did not offer support. developing experiential learning activities and ensuring that course content is aligned with the contemporary ethical practices, such as case study and portfolio development, is recommended. correspondence: linda s. behar-horenstein, school of human development and organizational studies in education, university of florida, gainesville, fl, usa. e-mail: lsbhoren@ufl.edu key words: responsible conduct of research; clinical translational science; student perceptions; grounded theory; thematic analysis. contributions: lb-h made substantial contributions to the conception or design of the work; the acquisition, analysis, or interpretation of data for the work; drafting the work or revising it critically for important intellectual content; final approval of the version to be published; and agrees to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. hz made substantial contributions to the analysis, or interpretation of data for the work; drafting the work or revising it critically for important intellectual content; final approval of the version to be published; and agrees to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. conflict of interest: the authors declare no potential conflict of interest. funding: research reported in this publication was supported by the national center for advancing translational sciences of the national institutes of health under university of florida clinical and translational science awards tl1tr001428, kl2tr001429, and ul1tr001427. the content is solely the responsibility of the authors and does not necessarily represent the official views of the national institutes of health. received for publication: 17 november 2018. revision received: 31 january 2019. accepted for publication: 31 january 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright l.s. behar-horenstein and h. zhang, 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:15-24 doi:10.4081/qrmh.2019.7943 qualitative research in medicine & healthcare 2019; volume 3:15-24 no nco mm er cia l u se on ly of research integrity9 kon et al. recommended content domains i) data acquisition, management, sharing, and ownership; ii) mentor/trainee responsibilities; iii) publication practices and responsible authorship; iv) peer review; v) collaborative science; vi) human subjects; vii) research involving animals; viii) research misconduct; and ix) conflict of interest and commitment). we adopted helton-fauth et al.10 four dimensions of research ethics: data management, study conduct, professional practices and business practices for this study because it was the most contemporary framework. data management refers to the appropriate methods for handling and reporting data. study conduct refers to informed consent and debriefing, confidentiality, and the treatment of human and animal participants according to board guidelines. professional practices refer to protection of intellectual property, protection of public welfare and the environment, adhering to professional commitments, mentoring, and the treatment of collaborators. business practices refer to contract and grant bidding, the use of physical resources, conflict of interest, and laboratory management. gaining insight into how well these dimensions are enacted in research ethics education needs to be examined. researchers have shown that approaches to teaching the responsible conduct of research (rcr) tend to negate the importance of developing tolerance and responding appropriately to complex ethical dilemmas. antes et al.11 examined the impact of rcr instruction on research ethical decision-making with 173 participants. results showed that the ethicality of decisions made in relationship to data management, study conduct, and professional practices did not improve or decline following instruction. also, following the completion of the rcr course, the ethicality of participant’s business related decisions (i.e., contract bidding) decreased. individual awareness of situational elements and their ability to weigh personal motivations improved. however, with regard to the social elements of ethical problems, they were more internally focused and closed off when making decisions. antes et al.11 concluded that when instructors exaggerate evading ethical dilemmas, students develop unrealistic expectations about their capabilities to handle ethical problems. these researchers showed that the rcr research ethics courses may not be effective or may even be harmful.7 they recommended exploring possible obstacles and characteristics of effective research ethics education in future studies. yarborough and hunter12 argued that the role of research ethics is not sufficiently emphasized in science at the graduate and postgraduate levels. they emphasized the presidential commission for the study of bioethical issues moral science: protecting participants in human subjects research13 report recommendations, which suggested creating a culture of responsibility, as well as utilizing creative and innovative approaches in teaching research ethics. moreover, they advised that research ethics instructors focus on teaching researchers how to avoid misconduct and counsel them about what they must and must not do. experiential learning theory this study is grounded in the well-established experiential learning theory (elt).14 this model posits that acquisition of new knowledge and skills depends on a cycle of successive learning experiences. the premise underlying etl is that learning evolves via four types of engagement: i) experiential (i.e., concrete experience) whereby researchers gather information from the world (e.g., observations of inappropriate author attribution); ii) reflective (i.e., reflective observation) whereby researchers take time to think, process, organize and relate inputs to other known factors that surround that experience (e.g., why pis falsify data); iii) abstract (i.e., abstract conceptualization) whereby researchers create new meanings and develop new ways of looking at existing information (e.g., how data falsification differs among senior and junior researchers); and iv) action (i.e., active experimentation) whereby researchers actively test a hypothesis (e.g., using an existing dataset, the researcher tests her emergent hypothesis that senior faculty tend to falsify data more frequently than junior faculty). this new knowledge is then re-introduced back into the learning cycle. however, the cycle is in continuous flux as researchers engage in experiences inside and outside the learning environment. the elt promotes reflective conversation that enables researchers to shape their responses to project goals (e.g., creating a conversational space for members to reflect on their experiences with research ethical dilemmas) while applying and assessing the utility of new knowledge15,16 elt stimulates sharing the functional role of the leadership17 whereby personal needs are replaced by shared roles necessary for meeting project or team goals. kolb18 showed that the training of researchers or teams are cultivated by sharing experiences and reflecting on the meaning of those experiences together. materials and methods participants prior to beginning the study, irb approval was granted (irb #2015-u-0988). the study sample (n=31 out of 53 or 58%) included 5 predoctoral and 10 postdoctoral fellows funded by a t32 award and 16 students funded by a tl1 award. participants were drawn from all students (15 predoctoral, 17 postdoctoral, and 21 tl1 students) enrolled in one or more of the rcr courses at a single ctsi hub over a two-year period. postdoctoral fellows were funded by the national research service awards postdoctoral training program (t32), which is designed to ensure that a diverse and highly trained workforce is available to meet the nation’s biomedical, behavioral, and clinical research needs. tl1 graduate stu[page 16] [qualitative research in medicine & healthcare 2019; 3:7943] article no nco mm er cia l u se on ly dents funded by a ctsa award were expected to acquire the skills needed to develop a career in multidisciplinary clinical and translational research. mentoring and didactic training was provided for all participants. also, while enrolled in the program, participants performed clinical and/or translational research in health-related fields. per grant requirements, all t32 and tl1 trainees were also required to enroll in one of the two academic health science center’s research ethics courses: rcr or the ethical policy issues in clinical research. procedures we conducted 15 semi-structured interviews with t32 preand post-doctoral students. interviews ranged from 17-55 minutes. five focus groups, ranging from 60-90 minutes, were conducted with 4-6 pre-doctoral tl1s. we conducted interviews with sets of t32 trainees because they worked in different laboratories. this approach was the easiest way to encourage their participation in the study. since tl1 trainees were cohort groups, we used focus groups to access their perceptions. the purpose of the interview and focus groups protocols was to evaluate the program’s effectiveness in providing relevant training experiences. we asked students to describe to what extent they believed that coursework prepared them to avoid misconduct and how to deal with scientific ethical dilemmas. we also asked them to provide specific examples of learning activities that they considered instrumental in increasing their knowledge of rcr and skills. the same questions were used for both data collection types. data analysis the researchers, a senior professor in education, and a 2nd year doctoral student in school psychology independently analyzed the compiled data by applying a constructivist, grounded-theory approach as described by charmaz.19 prior to the analysis, we assigned pseudonyms to each participant. both behar-horenstein and zhang read each of the focus group and interview transcripts line-by-line as a separate entity. each of us developed a list to denote emergent themes and described each theme in 4-6 words. we met to discuss our independent notions of the emergent themes. then, we used open coding while reading line by line. we compared open coding to ensure that a systematic approach to analysis was occurring before moving on to develop categories and emergent themes. the authors reached consensus on the identification of the categories as well as on the two themes that emerged in this study, awareness of ethical violations and responding to ethical dilemmas. consistent with charmaz’s19 guidance, we used gerunds to connote observable and conceptual action in the data. each researcher tagged text and we audited each other's selected text to ensure agreement. we illustrate the progression from open codes to categories/axial codes and themes in the following examples. for a portion of the focus group text that read: i think that’s more of the benefits of the course, it just gives you the vocabulary to say this is how i identify this is wrong, this is the kind of…it was open coded as developing vocabulary. next, it was conceptualized as belonging to the category/axial code ethical violation belonging to the theme, awareness of ethical violations. how interview data was coded can be seen in the following example. the text that read: depends on the dynamics of the relationship with whoever is scientific misconduct is occurring with, and there is no clear-cut answer was open coded as responding depends on dynamics. this text was conceptualized as belonging to the category/axial code, ethical dilemma response, belonging to the theme, responding to ethical dilemmas. there were two axial codes, ethical violation corresponding to theme, awareness of ethical violations, and ethical dilemma response corresponding to theme, responding to ethical dilemmas. an audit trail shows progression from selected interview and focus group data to open coding, categorization, themes, and their related conceptual definitions (table 1). the use of two independent coders aided us in reducing the potential for bias. reading line-by-line and coding segments assisted in making supporting quotations more accessible. data were analyzed by coding and identifying participants’ spoken words to support the categories that were identified. this rigorous and systematic approach allowed us to feel confident that what we report is representative of participants’ perspectives. attention to credibility, and confirmability facilitated establishing trustworthiness. credibility, confidence in the truth of the findings, was achieved through triangulation and peer debriefing. triangulation was accomplished by: i) using two analysts; ii) reviewing multiple interview transcripts; iii) using qualitative line by line coding and peer debriefing to ensure the accuracy of interpretations. confirmability was achieved by engaging more than one person in analyzing the data. analysis of course syllabi we used thematic analysis20 to analyze the two ethics course syllabi. first, we applied helton-fauth’s et al.10 four dimensions of research ethics to search for what we could argue was evidence of content, aligned with topics in data management, study conduct, professional practices, and business practices. next, we reviewed the syllabi for the presence or absence of described learning experiences and examined the syllabi for a description of instructional methods used (e.g., lecture, small group discussions) and evidence of experiential learning activities (e.g., student led-discussions or presentations, exploration of research ethics case studies). [qualitative research in medicine & healthcare 2019; 3:7943] [page 17] article no nco mm er cia l u se on ly results awareness of ethical violations this theme was defined conceptually as, having a clear idea of how to recognize what constitutes unethical conduct (e.g., falsifying data, inappropriately handling, storing sharing, and reporting data, not treating human and animal subjects according to board guidelines, accepting authorship without meeting acceptable guidelines for intellectual contributions). representative examples showed that participants described if and how research ethics coursework offered adequate preparation to help them avoid unethical misconduct. their views on whether the research ethics coursework would help them avert scientific misconduct and if they received adequate preparation to avoid misconduct were mixed. five (16%) participants believed that they already knew how to prevent scientific misconduct from past experiences or from interaction with mentors. coursework did not change their perspective on ethical misconduct. beverly shared that, i don’t think t32 specifically will help me to avert scientific misconduct. i think that’s just something you learn from your mentors. diane said, that’s one where i see a little bit less impact on what i’ve been doing just because i used to work as the project manager. all of my background is very focused on ethics training. similarly, john asserted that, my academic program and my department already have a lot of emphasis on research conduct, and so i don’t think that the t32 has really added to that. both diane and john asserted that they obtained requisite knowledge on averting unethical actions prior to entering the program. 10 (32%) participants believed that the course would help them avert scientific misconduct. several participants noted feeling confident about this specific issue. andrew said, i think being forced [to] interact with people who are medically oriented…pushes me further away from scientific misconduct…susan felt that learning about the importance of interpreting data in a less biased fashion in the research ethics course would assist her in averting scientific misconduct in the future. the responses suggested the courses helped some trainees recognize science misconduct more easily and would likely ensure that they avoided it in future interactions. ten (32%) participants opined that the research ethics course would not help them avert scientific misconduct. for example, robbie reported having no ethical training within the program. natasha did not believe the ethical [page 18] [qualitative research in medicine & healthcare 2019; 3:7943] article table 1. audit trail progression: selected interview (i) or focus group (fg) data, open coding, categories/axial codes, themes, and conceptual definitions. i and fg data open codes categories/axial codes themes conceptual definition i think that’s more of the developing vocabulary ethical violation awareness of ethical having a clear idea of how benefits of the course, it just violations to recognize what gives you the vocabulary to constitutes unethical say this is how i identify conduct (e.g., falsifying this is wrong, this is the data, inappropriately kind of… (fg) handling, storing sharing, and reporting for me, it just creates developing awareness ethical violation data, not treating human awareness for us being and animal subjects in the scientific community according to board because actually, i didn’t guidelines, accepting realize, learning through authorship without all these examples i’ve meeting acceptable learned in class so far, guidelines for intellectual how common it is. (fg) contributions) depends on the dynamics responding depends ethical dilemma response responding to ethical acquiring strategies or of the relationship with on dynamics dilemmas principles to effectively whoever is scientific address situations, in misconduct is occurring which scientific with, and there is no misconduct occurs, clear-cut answer. (i) especially with people who they had have it would depend on what overlooking vs ethical dilemma response special relationships they were doing if that’s deliberately doing with you, such as something that could be mentors or peers addressed directly with them…maybe just something that they overlooked and didn’t realize they were doing vs something that was deliberately depends. (i) no nco mm er cia l u se on ly class helped her to avert scientific misconduct. cindy reasoned that, if you are going to be an ethical person, you are going to be an ethical person. she asserted that taking a research ethics class was inconsequential. julie shared that she did not, …think that the ctsi has a huge emphasis on that scientific misconduct. maybe just because i just took an ethics class like a little while ago you know… proportionally, the number of participants who did and did not believe that research ethic courses changed their perception of science misconduct was the same. this finding suggested that perhaps the courses were not instrumental in augmenting participant knowledge of research ethics or in promoting their understanding of how to avert and address it. the remaining six (19%) participants did not share opinions regarding whether the course was helpful in their prospective efforts to avert scientific misconduct. among those 10 (32%) participants who believed that the course would help them avert scientific misconduct, five (16%) participants reported that the coursework provided them with a clear idea of how to recognize what constitutes unethical conduct (e.g., managing data, inappropriately, not treating human and animal subjects according to board guidelines, accepting authorship without meeting acceptable guidelines for intellectual contributions). eight (26%) participants talked about their awareness of ethical violations and remarked that the research ethic courses had improved their awareness. for example, sue reported that, it’s easy to not realize that it might not be ethical, but at least it points it out and makes it – now to me i think it’s more obvious, now that i’ve been exposed to it and i can tell. six (19%) participants shared that their awareness of ethical violations had improved by talking about unethical examples. violetta acknowledged that … you cannot change the trend of the data because then you would be falsifying the data. daniel felt that one benefit of the course was acquiring the vocabulary to say this is how i identify [that] this is wrong. sue pointed out how class content and interactions helped her appreciate that, it’s easy to not realize that it might not be ethical, but at least it points it out and makes it…more obvious, now that i’ve been exposed to it. evie pointed out that coursework examples made her realize just how common it is. learning about potential ethical violations raised participant cognizance of what constitutes misconduct and helped them recognize that it was more prevalent than they thought. responding to ethical dilemmas this theme was defined conceptually as, acquiring strategies or principles to effectively address situations, in which scientific misconduct occurs, especially with people who they had have special relationships with you, such as mentors or peers. exemplification of this theme was evidenced by participants describing if their coursework offered strategies to help them address scientific misconduct. sue said: in that course they talk about how if you experience it, how to approach the correct people, like the research integrity office, to think of your specific university, if it were to get to that point, but also how to try to recognize the problem if you see it in your lab setting [such as] how it can affect your research [or] how to talk to your pi maybe and/or if you think that that’s what’s happening. i haven’t been exposed to that thankfully, but i feel like if it were to happen, [now i have a better sense of] what actions to take. anthony said the course content and interactions, raise[d] awareness of how things aren’t black and white, but the principals involved in it, staying briefed on it and honestly reinforcing that the end never justify the means with any research endeavor… only one person talked about particular instructional strategies used in the courses such as role play or the types of learning activities (i.e., developing their own research ethics case and potential responses, debating ethical responses to cases involving transplantation, genetic testing, or cloning). cindy reported that participants never really learned exactly how to confront someone committing ethical misconduct because it mainly focused on cases that had happened in the past. thus, students received little to no strategies or approaches for how to respond to observations of unethical behavior. they did not report who to go to if they saw a problem. this finding points to a need teaching participants about potential on the approaches that could be used while responding to unethical behaviors. when talking about how to respond to ethical dilemmas, three (10%) participants believed that they had received clear directions or guidance. participants acknowledged that that their response to a violation would depend on the interactional context and on the type of ethical issues they observed. cory stated that his reaction to an ethical dilemma would depend on the dynamics of the relationship with whoever the scientific misconduct is occurring with, and there is no clearcut answer. his comment points out the imminent, but multi-faceted conflict that ensues when misconduct is caused by individuals who mentor and fund student research. jordan said that his course helped him realize that things are not black and white, and acknowledged that there were ethical principles he could use as references. larry appreciated learning about the ambiguity of ethical dilemmas. he claimed that grey areas are mine every day and now understood that individuals could make, just bad decisions or careless ones. summary sentence here. three (10%) participants felt confident that they could handle challenges related to ethical misconduct because they learned related strategies from previous classes, or they believed they could find people with whom they could seek their counsel. notably, these participants ref [qualitative research in medicine & healthcare 2019; 3:7943] [page 19] article no nco mm er cia l u se on ly erenced courses that were not included in this study. kate who had taking another research ethics class that was not part of this study, reported that she acquired a solutionfocused perspective, an ability to recognize problems, and would seek help from others. only three (10%) participants said that when faced with an ethical dilemma they would contemplate its nature before taking any action. this response signifies their uncertainty. in contrast, diane reported that if faced with unethical mentor behavior that initially she would try to determine the feasibility of discussing the situation directly with person directly involved and assess if it was a conscious action or an overlooked mistake. only three (10%) participants reported that they obtained new insight about how to handle ethical dilemmas although they did not offer more specific details. suzi said, it’s been helpful and then it also brings up a lot of dilemmas that i didn’t really know still existed when considering placebo-controlled trials. while claiming that she acquired insight into how to resolve dilemmas, she did not describe specific strategies that would guide her reactions. analysis of ethics courses using thematic analysis20 of the rcr course syllabus, we found that while it covered helton-fauth’s et al.10 four dimensions of research ethics. however, only one element within the business practices – conflict of interest – was referenced in the syllabi. the findings showed that course content did not include consent and debriefing, confidentiality, mentoring, protection of public welfare and environment, contract and grant bidding, the use of physical resources, and laboratory management. the ethical policy issues in clinical research course covered four dimensions of research ethics. however, it did not include coverage of mentoring, treatment of collaborators, contract and grant bidding, the use of physical resources, and laboratory management (table 2). neither of the research ethics course syllabi included a list of course goals and course objectives or a description of instructional delivery methods, assignments, or evaluation methods. although the rcr course listed a numerical scale for assigning letter grades (unlike the ethical policy issues in clinical research course), the linkage between student work and how assignments were graded was not described. from a pedagogical perspective, these syllabi would leave most students asking what tangible learning outcomes they would be able to demonstrate by the conclusion of these courses. without a list of learning objectives, it is difficult to appreciate where the instructor is headed and what students are expected to be able to do.21 a lack of clarity regarding course objectives and student work products likely influenced the apparent lack of experiential teaching and ultimately the quality of student experiences.21 other than the mention of team-based learning for some rcr course sessions, there was no description of how learning activities fostered student dialogue or hypothetical actions to promote effective responses to real world ethical challenges.22,23 also, we found no other information in the rcr course syllabi to demonstrate that active instruction was occurring. in the ethical policy issues in clinical research syllabus, the inclusion of interactive analysis of human subject scandals using data and video, discussion of informed consent procedures applied to cases, review of recruiting ads, and critique of informed consent suggested the use of active learning experiences. however, a failure to describe related student work products and processes, calls into question whether such activities were actually provided. discussion from a theoretical perspective the study findings show that students found the ethics courses to be lacking an emphasis in promoting three of the four types of learning, reflection, abstraction, and action. students reported little to no opportunity create new meanings, to develop new ways of looking at information, or to actively test hypotheses.14 despite the mentioning of active learning experiences documented in the ethical policy issues in clinical research syllabus, students’ perceptions did not align. however, consistent with the first elt level, experiential, students described receiving conceptual information from both courses. the findings showed that the research ethics courses were effective in raising participant awareness of predominant forms of ethical violations such as, inappropriate data management, failure to treat human or animal subjects appropriately, and violating others’ intellectual property. about a third of the participants believed that the courses would help them avert prospective unethical misconduct while another third disagreed. the remainder expressed no opinion one way or another or stated that they already knew how to prevent scientific misconduct. many participants found the research ethics courses peripheral to their interests, or even a distraction from what they consider their real work. none of the participants reported acquiring specific strategies regarding how, if presented with an ethical dilemma in the future, they would address those dilemmas. overall, participants were not being well enough equipped to address ethical dilemmas. this raises questions regarding the potential impact for them going forward as professional/academic researchers and, in turn, on their students, and with those with whom projects are conducted. these findings suggest that greater effort must be devoted to identifying specific guidelines to help students handle dilemmas.24 several participants reported that they had no idea how they would actually respond if presented with an ethical dilemma. consistent with domen’s25 suggestion, research ethics educational experiences ought to focus not only on conveying relevant knowledge but also on foster[page 20] [qualitative research in medicine & healthcare 2019; 3:7943] article no nco mm er cia l u se on ly ing ethical problem-solving skills. bærøe22 proposed adopting a medical framework to use when making ethical decision. he recommended a five-step process that includes: i) identification of the ethical challenge; ii) development of a normatively justified approach; iii) testing of the feasibility of the proposed approach in a real-world setting; iv) implementation of the adjusted result; and v) evaluation of the resulting practice. unsurprisingly, none of the participants talked about how to make ethical decisions based on this model. [qualitative research in medicine & healthcare 2019; 3:7943] [page 21] article table 2. thematic analysis of ethics topic coverage and learning activities in the responsible conduct of biomedical research and ethical policy issues in clinical research courses. responsible conduct evidence of learning ethical policy issues evidence of learning of biomedical research activities in clinical research activities topics* data management appropriate methods of yes/data management none yes/issues in genetics regulation cases handling, and reporting data practices and human embryonic stem cells, fraud, fabrication and falsification of data study conduct yes yes consent & debriefing no none yes/informed consent critique of informed in research consents translation of protocol language comprehensible to lay audience confidentiality no none yes/maintaining the case studies confidentiality of research data treating human participants yes/protection of human none yes/clinical research with case studies, according to board guidelines subjects special populations: critiques of recruiting children and adolescents/ ads, critique cases clinical research with with minors, vulnerable special populations: populations and prisoners cognitively impaired people, prisoners, soldiers and students treating animal yes/welfare of none yes/ethical use of animals none participants according laboratory animals in research to board guidelines professional practices yes yes protection of intellectual yes/authorship & none yes/ethical issues in light outline criteria for property publication of intellectual property determination of authorship. issues/rules of authorship application of misconduct procedures protection of public welfare no none yes/ethical issues in case studies and environment community engagement research adhering to professional yes/avoiding research none yes explain the procedures for commitments misconduct reporting and investigating misconduct in research mentoring yes/mentor & trainee none no none responsibilities treatment of collaborators yes/collaborative research none no none business practices yes yes contract and grant bidding no none no none use of physical resources no none no none conflict of interest yes/conflicts of interest none yes/conflicts of interest critique of cases & commitment laboratory management no none no none *denotes yes to indicate if topic was described in syllabus or no if it was not taught, and if appropriate indicates what content domain. no nco mm er cia l u se on ly also absent from student discussion was an explicit conversation as recommended by bærøe regarding how to counteract identified barriers to ideal decision-making, regarding the context (e.g., resource scarcity, geographic and demographic challenges), biased distribution of opportunities among individuals (e.g., voicing concern, deliberating a processing information, reaching a conclusion and acting on it), and pragmatic barriers that undermine feasibility (e.g., the organization of information flow in institutions).22 students made only a passing reference to the interplay between the importance of gaining theoretical and practical ethical knowledge when they hypothesized how they might respond to misconduct committed by a mentor. otherwise, participants did not describe challenges related to the real world of practice and ethical decision-making22 moreover, none of the participants discussed how organizational systems or cultural norms might ultimately contribute to impeding human research subject protection.26 none of the participants discussed the inherent challenges related to providing informed consent when it embraced clinical situations new to both patient and clinician, or how the informed consent process might be impacted by issues involving transplantation, genetic testing, or cloning.27also, no participant referenced how they might respond to ethical and scientific issues related to the use of health technologies, the ethics of randomization, clinical trials28 or non-medical tasks, such as information technology, engineering, nanotechnology, and economy.23 although hostiuc et al.23 argued that the practice of research ethics should be concordant with the elements of the translational process: phases, gaps, and data transfer, not a single participant referred to these matters. along the same lines there was no evidence showing that participants discussed critical ethical questions coming from interactions between investigators, irbs and regulators. along the same lines, participants did not describe the kind of attention they should demonstrate towards trial safety dimensions such as disease gene transfer trial.29 analysis of the courses showed that both covered most of the recommended content domains of research ethics. however, there was little evidence to illustrate the use of learning activities in the rcr course that could have otherwise promoted deep student understanding of the practical application of research ethics information. although some of active learning experiences were listed in the ethical policy issues in clinical research syllabus, without description of related student work products or other outcomes, we cannot discern if such activities took place. these findings suggest that neither course may not have been adequately equipping students to address ethical dilemmas in the profession. from our analysis, it seems likely that both instructors relied heavily on a passive teaching approach characterized by dissemination of information. antes et al.7 used scenarios to measure ethical decision-making. however, as shown in this study neither course employed role play or scenarios that might foster practice and application of what students were taught in class. with respect to topics pertaining to: i) treating human participants according to board guidelines, ii) protection of intellectual property, iii) adhering to professional commitments and iv) coverage of conflicts of interest, there was no information regarding whether this was an individual or group activity. additionally, the assessment of student work products was not described. kon et al.8 and dubois et al.7 focused on rcr course content and materials. they recommended assessing the effectiveness of courses to determine whether existing rcr training programs are effective in achieving their intended purposes, while noting that it is a limitation of most studies.30-32 although this study represents a single clinical translational hub, it represents a sizeable number of participants. we suggest that scholars consider methodological changes in future studies. first, we advise researchers to interview course directors, make direct observation of teaching or administer surveys to measure participant ethical knowledge before and after course completion. second, we suggest differentiating the participants, by their field of study and their level of training, and ethics courses participation to determine if there are subgroup differences. third, recommend asking participants for their suggestions and recommendations regarding how courses can be improved. educational implications and best practices in this study, the researchers examined students’ perceptions of how well research ethics coursework prepared them to respond to ethical research dilemmas in the clinical translational research workplace. we examined the fit of course content with best practices as described in the literature. as shown, outcomes were not uniformly positive. limitations associated with course content and instructional practices were also described. we draw upon klimmelman29 and domen25 and elt to offer recommendations regarding how to improve course effectiveness and achieve desired student outcomes. first, while teaching research ethics, we propose that instructors distribute attention equally between the known and unknown risks of the translational research for all actors who participate in it.7 this can be addressed in part by utilizing currently available resources, updating, and revising the course content. second, we advise adding case-based scenarios that cause students to hypothesize and discuss how they would respond to real world dilemmas in research ethics practice such as: i) counteracting identified barriers; ii) embracing clinical situations new to both patient and clinician; iii) pondering the advances of science and ethical limitations related to transplantation and health technologies; iv) weighing the ethics of randomization, clinical trials, and non-medical tasks, such as information technology, engi[page 22] [qualitative research in medicine & healthcare 2019; 3:7943] article no nco mm er cia l u se on ly neering, nanotechnology, and economy; and v) responding to the phases, gaps, and data transfer inherent to translational research.22 implementing this approach along with experiential learning activities would strengthen student capacity to discuss, demonstrate and write about their reasoning.22-24 and bolster their capacity to judiciously weigh competing viewpoints.25 third, we suggest using case-based scenarios and asking students to respond in writing how they would address particular ethical research problems.33-35 further, we suggest asking students to provide evidence that supports their perspective. this activity would move students beyond the stages of concrete experience, reflective observation and abstract conceptualization towards active experimentation and hypothesis testing. along the same lines, classmates could serve as peer evaluators and provide feedback.34 such an approach would encourage students to introspect, document and provide evidence to support their reasoning while bolstering their skills in written communication. additionally, it would provide a record of changes for both instructor and student consideration as students gain maturity in their ethical reasoning skills. fourth, we endorse fostering student capacity to weigh complex interactional information. we suggest requiring students to develop their own case studies around research ethical dilemmas and include a set of questions for readers to use as they contemplate responding.36 this activity would provide additional opportunities to work through and solve research ethical dilemmas as a team. also, we commend the use of real-time role play activities during class whereby students would respond in real time to ethical research dilemmas is suggested. following each role play, the instructor could review student actor responses, engage the class audience in debriefing and ask the students to offer recommendations for alternative responses.33-34 this activity would encourage thinking in action and practice in providing prompt responses. to further strengthen student ability to judiciously weigh interactional information in the face of ambiguity, we suggest assigning a group project that requires students to find a real case and describe how the researchers responded. similar to the suggestions above, this type of activity would promote the application of newly learned information and provide opportunities for students to speculate about its utility. consistent with the premise of elt,1418 each of the aforementioned activities successively builds upon initial knowledge acquisition and moves towards active experimentation. teaching in this manner is likely to ensure that students develop facility in responding independently and effectively to research ethical dilemmas. the national institute of health requires that all federally funded institutions offer rcr. however, requiring enrollment in research ethics courses is insufficient without a concomitant emphasis on evaluating instruction and student outcomes, suggesting that they are in effect a stamp of approval. to ensure that research ethics courses adequately prepare researchers to handle the complexities of ethical dilemmas in translational science research, we offer several ideas to further this research agenda. first, we recommend evaluating course activities to demonstrate how well teaching research ethics impacts student knowledge, attitudes and skills. second, we encourage researchers to simultaneously interview course directors as well as students who completed the courses and compare datasets. third, we recommend using teaching observations to document the nature of student-faculty interactions. analysis of this dataset could shed light on how instructional practices impact potential changes in student knowledge, attitudes, and skills. fourth, we suggest acquiring bigger sample sizes across the nation’s ctsis to amass a large database of student outcomes and insight about the similarities and differences in course content and learning activities. using a standardized approach to evaluation, comparative findings from such studies might advance the common metrics movement by permitting institutional and intrainstitutional perspectives that showcase outcomes from research ethics coursework.37 fifth, to ensure the contemporariness of educational delivery, we recommend moving these courses to an online format while examining the effect of online teaching and learning outcomes.38 finally, we urge undertaking an analysis of student portfolio documentation of ethical issues and their responses over successive years is recommended to illuminate the manner in which students make meaning and apply their emergent knowledge of research ethics education. conclusions using grounded theory and thematic analysis, the authors report clinical translational students’ perceptions of their research ethics coursework and the alignment between course content and what is recommended in the literature. while course content focused on most of the recommended dimensions of research ethics, students had little opportunity to actively apply what they were learning and received few strategies to assist them in addressing research ethical dilemmas. we suggest course revisions, supported by experiential learning activities, that aim to ensure that student acquire and utilize requisite tools to address ethical dilemmas in clinical translational research. references 1. allen d, ripley e, coe a, clore j. reorganizing the general clinical research center to improve the clinical and translational research enterprise. eval health professions 2013;36:492-504. 2. clinical and translational science awards. available from: https://ncats.nih.gov/ctsa. accessed: january 24, 2019. 3. institute of medicine. the ctsa program at nih: opportunities for advancing clinical and translational research. [qualitative research in medicine & healthcare 2019; 3:7943] [page 23] article no nco mm er cia l u se on ly washington, dc: the national academies press; 2013. 4. pincus ha, abedin z, blank ae, mazmanian pe. evaluation and the nih clinical and translational science awards: a “top ten” list. eval health professions 2013;36:411-31. 5. estape e, de laurido les, shaheen m, et al. a multi-institutional, multidisciplinary model for developing and teaching translational research in health disparities. clin trans sci 2011;4:434-8. 6. loue s. the impact of a research ethics training program. jerhre 2014;9:46-55. 7. dubios jm, schilling da, heitman e, et al. instruction in the responsible conduct of research: an inventory of programs and materials. clin transl sci 2010;3:109-11. 8. kon aa, schilling da, heitman e, et al. content analysis of major textbooks and online resources used in responsible conduct of research instruction. ajob pri res 2011;2:42-6. 9. steneck nh. ori introduction to the responsible conduct of research. washington, dc: u.s. government printing office; 2004. 10. helton-fauth w, gaddis b, scott g, et al. a new approach to assessing ethical conduct in scientific work. acct res: pol & qual assr 2003;10:205-28. 11. antes al, wang x, mumford md, et al. evaluating the effects that existing instruction on responsible conduct of research has on ethical decision making. acad med 2010;85:519-26. 12. yarborough m, hunter l. teaching research ethics better: focus on excellent science, not bad scientists. clin trans sci 2013;6:201-3. 13. presidential commission for the study of bioethical issues. moral science: protecting participants in human subjects research. available from: https://bioethicsarchive.georgetown.edu/pcsbi/node/558.html accessed: august 6, 2018. 14. kolb ay, kolb da. learning styles and learning spaces: enhancing experiential learning in higher education. acad man learn educ 2005;4:193-212. 15. baker ac, jensen pj, kolb da. conversational learning: an experiential approach to knowledge creation. westport, connecticut: greenwood publishing group; 2002. 16. dewey j. my pedagogic creed. curriculum studies reader e2. washington: routledge; 2013. pp 29-35. 17. mills m. the sociology of small groups. upper saddle river, nj: prentice hall; 1984. 18. kolb da. experiential learning: experience as the source of learning and development. new jersey: ft press; 2014. 19. charmaz k. constructing grounded theory: a practical guide through qualitative analysis. london, thousand oaks, calif: sage publications; 2006. 20. aguinaldo jp. qualitative analysis in gay men’s health research: comparing thematic, critical discourse, and conversation analysis. j homosexual 2012;59:765-87. 21. nemec pb, bussema e. learning objectives. psychiatr rehabil j 2010;33:328-30. 22. bærøe k. translational ethics: an analytical framework of translational movements between theory and practice and a sketch of a comprehensive approach. bmc med ethics 2014;15. 23. hostiuc s, moldoveanu a, dascălu m-i, et al. translational research – the need of a new bioethics approach. j trans med 2016;14:16. 24. colnerud g. brief report: ethical problems in research practice. jerhre 2013;8:37-41. 25. domen re. the ethics of ambiguity. academic path 2016;3. 26. strosberg ma, genefas e, famenka a. research ethics review: identifying public policy and program gaps. jerhre 2014;9:3-11. 27. kagarise mj, sheldon md. translational ethics: a perspective for new millennium. jama surg 2000;135:39-45. 28. stream research. available from: http://www.translationalethics.com/ accessed: august 6, 2018. 29. kiimmelman j. ethics, ambiguity aversion, and the review of complex translational clinical trials. bioethics 2011;26:242-50. 30. kligyte v, marcy rt, sevier st, et al. a qualitative approach to responsible conduct of research (rcr) trining development: identification of metacognitive strategies. sci eng ethics 2008;14:3-31. 31. anderson ms, horn as, risbey kr, et al. what do mentoring and training in the responsible conduct of research have to do with scientists’ misbehavior? findings from a national survey of nih-funded scientists. acad med 2007;82:853-60. 32. heitman e, olson ch, anestidou l, bulger re. new graduate students’ baseline knowledge of the responsible conduct of research. acad med 2007;82:838-45. 33. behar-horenstein ls, feng x, isaac c, lee b. dental students’ expression of cultural competence. j ethnograph qual res 2017;11:171-87. 34. behar-horenstein ls, feng x. enhancing cultural competence among dental students through active teaching and experiential learning. qual rep 2017;22:1169-85. 35. behar-horenstein ls, catalanotto fa, garvan cw, hudsonvassell cn. an assessment of faculty and dental student decision-making in ethics. j am coll dent 2014;81:44-50. 36. johnson j, bagdasarov z, connelly s, et al. case-based ethics education: the impact of cause complexity and outcome favorability on ethicality. jerhre 2012;7:63-77. 37. rubio dg. common metrics to assess the efficiency of clinical research. eval health prof 2013;36:432-46. 38. silverman h. strosberg m, luna f, et al. an analysis of online courses in research ethics in the fogarty-sponsored bioethics training programs. jerhre 2013;8:59-74. [page 24] [qualitative research in medicine & healthcare 2019; 3:7943] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2018; 2:7850] [page 145] introduction music therapy in multidisciplinary end-of-life care dates back to the 1970s. it is highly accepted by people approaching the end of life and beset with few side effects.1 nowadays both music therapy practice and research have been implemented internationally.2a recently published integrative review on music therapy in end-oflife care found 1629 research studies on the subject, conducted between 1978 and 2016.2 there is increasing evidence of music therapy’s benefits in end-of-life care with an overall tendency to psycho-physiological improvement. however, these improvements are captured and expressed quite contrasting by patients and healthcare providers. while the latter ones focus on the measurement of symptoms like pain and anxiety, patients and their families themselves associate music therapy rather with the promotion of well-being and the improvement or completion of relationships. on the background of these diverging perspectives, an integrative, participatory design for future music therapy research is recommended.2 in general, research in end-of-life care is complex, and researchers and participants face specific ethical and practical challenges. these challenges include i) recruitment and involvement of terminally ill people presenting with often frail and rapidly changing conditions in research, ii) strategies for the identification of research topics and outcomes relevant for the people involved, and iii) an increasing preference for end-of-life care at home.3,4 these issues are true for any discipline conducting research with people in end-of-life care – music therapy included. moreover is research most often conducted solely from one perspective, that means from the one of healthcare professionals, or family members and/or terminally ill people themselves.2,5 this one-sidedness is clearly in contrast to the who definition of palliative care, highlighting more holistic approaches and multidisciplinary mindsets to improve terminally ill people’s quality of life.6 meeting complexity with collaboration: a proposed conceptual framework for participatory community-based music therapy research in end of life-care wolfgang schmid the grieg academy, department of music, faculty of fine art, music and design, university of bergen; sunniva centre for palliative care, haraldsplass deaconess hospital, bergen, norway abstract research in end-of-life care is complex with specific ethical and practical challenges related to epistemology, methodology and recruitment of people approaching the end of life. however, to ensure the provision of high-quality care research efforts need to be aligned with the priorities of patients, their families, and interdisciplinary team members. a more systematic engagement of all three groups in research is needed to promote tailored and appropriate end-of-life care. in this methodological article i propose a conceptual framework for community-based participatory music therapy research in end-of-life care scenarios as one promising strategy to respond to ethical and practical challenges, to handle complexity and advance integration of perspectives. the conceptual framework consists of two thematic clusters i) participlinarity across contexts, and ii) community-based participatory music therapy research in end-of-life care scenarios. though in the early stages of development, the framework addresses issues of educational strategies and continuity of care, and aims to contribute to innovative music therapy research in the future. correspondence: wolfgang schmid, the grieg academy, department of music, faculty of fine art, music and design, university of bergen, lars hilles gt 3, 5015 bergen, norway. tel.: +47.45200271. e-mail: wolfgang.schmid@uib.no acknowledgments: the author would like to thank an anonymous reviewer for valuable comments on an earlier version of the manuscript and felicity burbidge rinde for text-editing. key words: music therapy; end-of-life-care scenarios; participatory research; participlinarity. conflict of interest: the author declares no potential conflict of interest. funding: the literature search for this article was partially funded by polyfon knowledge cluster for music therapy, university of bergen, norway. received for publication: 27 september 2018. revision received: 28 november 2018. accepted for publication: 28 november 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright w. schmid, 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:145-153 doi:10.4081/qrmh.2018.7850 qualitative research in medicine & healthcare 2018; volume 2:145-153 no nco mm er cia l u se on ly a more systematic engagement of all three groups in research is seen to support tailored and appropriate care at the end of life.7 consequently, research efforts need to be aligned with the priorities of patients, their families, and interdisciplinary team members.5 in 2012 the norwegian ministry of health and care stated that a more active role of patients in the development of innovative future healthcare services is as important as professionals’ and politicians’ contributions.8 accordingly, patient’s knowledge and experience needs to be weighted equally with specialist knowledge to promote co-engagement and innovation in healthcare services and research. this co-engagement can inform new forms of collaboration in working life and education, a change of existing cultures and attitudes in communication, and new strategies to support decision making processes. on this background, i focus in this article on the development of a conceptual framework for participatory research in music therapy within the field of end-of-life care and the idea to meet the complexities specific to research in end-of-life care with collaboration. i have been stimulated and informed by literature on participatory research in end-of-life care,7,9-12 music therapy research and theory, as well as by a recently published integrative review on the diverging perspectives of patients and healthcare providers on music therapy in end-of-life care.2 in the following, i will develop two thematic clusters in a synthesis of the aforementioned sources. the two clusters form the conceptual framework and address questions of who is part of the research community, and how a participatory research approach does respond to ethical and practical challenges specific to end-of-life care scenarios. i introduce the term end-of-life care scenarios here to account for the dynamic, unique and often multi-layered, changing and unpredictable aspects, including interactions of people, places and cultural aspects at the end of life. in the following, i will present key principles of both community-based participatory research and music therapy as an ecological practice in end-of-life care scenarios. thereby i establish a theoretical and epistemiological basis for the proposed conceptual framework. community-based participatory research in healthcare community-based participatory research is a form of social inquiry involving all participants actively in all aspects of the research process, which has recently been extended to use in health and social care.9,10 examples of participatory research include action research, cooperative inquiry, and community-based participatory research, to name but a few.7,11,12 despite differences among these approaches, all draw upon constructivist and critical theoretical perspectives and have three core values: i) participation: addressing collaboration in the research process in order to empower people, practitioners, and researchers; ii) action: bringing about change for people, organizations, and systems; iii) reflection: generating knowledge through collective reflective processes.7 israel et al.12 have formulated key principles for community-based participatory research in healthcare (table 1).7,12 following the constructivist paradigm, in participatory research multiple socially constructed realities that are influenced by social, cultural, and historical contexts exist. a fundamental characteristic of community-based participatory research is the emphasis on the participation and influence of non-academic researchers in the process of creating knowledge. it is not research on people, nor is it research for people, but research with people.13 participatory research adopts a way of how we view the world (ontology) that accommodates multiple perspectives, commits to action within the research process, and is based on inclusiveness and relationship building.14 to get at the tacit and common-sense knowledge that comes from experience and underpins practice, researchers build relationships with practitioners and engage with them as co-researchers. knowledge is generated from the experi[page 146] [qualitative research in medicine & healthcare 2018; 2:7850] article table 1. key principles of community-based participatory research in healthcare contexts.12 community-based participatory research in healthcare 1. recognizes a community as a unit of identity 2. builds on strengths and resources within a community 3. facilitates a collaborative and equitable partnership in all phases of the research 4. fosters co-learning and capacity building among all partners 5. balances knowledge and action for mutual benefit of all partners 6. promotes an empowering process that attends to social inequalities 7. addresses locally relevant health problems and considers multiple determinants of health and disease 8. occurs in a cyclical and iterative process that includes ongoing evaluation of successes and obstacles 9. disseminates findings and knowledge gained to all partners 10. involves a long-term process and commitment to sustainability no nco mm er cia l u se on ly ence of living and learning (epistemology). its creation involves social processes and is subject to others’ interpretation and critique. specific research methods are determined collaboratively by the purpose of the study, the context and setting, the theoretical perspectives (including local theory), and the input of community participants.12 thus, a continual dialectic of iteration, analysis, assessment, reiteration, and reanalysis integrates knowledge gained with actions to improve health in the communities involved. an enhanced understanding of a given phenomenon in health and social care research becomes possible. rather than being simply a research method, participatory research is an approach to research that emphasizes the intentional engagement of community members in sharing their unique perspectives and local knowledge throughout the research process – from problem definition through data collection and analysis to the dissemination and use of findings – to help effect change.7,11,12 while there is extensive research into symptom control and experiences of different aspects of end-of-life care, actually researching day-to-day practice within specialist palliative care using participatory approaches is much less common.9 this is curious, as existing community-based participatory research is highly suited to the ethical and practical challenges associated with end-of-life care research and has been found to hold substantial potential for advancing current opinions of the field and promoting sensitivity for future programs, practices and policies.7 however, it can be a demanding process when multiple ways of knowing and investigation meet, interact, and develop an understanding of each other.11,15 while a purposeful inclusion of multiple perspectives is seen as a strength of community-based participatory research, more time is required to reach common understandings (or close to common understandings) in the heterogeneous group specific to this kind of research.16 westhues et al.16 conclude that to achieve a synthesizing analysis of multiple perspectives and data sources within their collaborative mixed method participatory action research study required considerable reflection and ongoing dialogue. they emphasize the importance of strong project management skills to coordinate the many meetings and decisions required in the research process and to engage all partners in a meaningful way, particularly when it comes to data analysis and theory building. for some partners the process of theory development might be too abstract, whereas the presentation of results might well benefit from non-academic perspectives and ways of doing things. furthermore, westhus et al.16 recommend that the allocation of roles is clear and transparent from the very start of a participatory research project.10 stable long-term working relationships of academic and non-academic partners have also been found to give non-academic researchers greater comfort and confidence to express their opinions, and see themselves as full members of the research team.16 music therapy as an ecological practice in end-of-life care scenarios an ecological perspective in healthcare encompasses context in the broadest sense of the word. it includes physical, social, cultural, and historical aspects of context as well as attributes and behaviours of the persons within.17 movements such as ecological, community and social psychology have increasingly used an ecological metaphor.17 music therapy as an ecological practice focuses on the promotion of health within and between various layers of the socio-cultural community and/or physical environment.18 also included are any efforts to form, build, or sustain communities through music therapy. hereby music emerges between and amongst people: making music is making social life. thinking about music in this way is to take a broadly ecological perspective, exploring how people thrive and sicken, adapt and develop in relation to their ever-changing physical, social and cultural environment.19 such approaches include next to a person presenting with health issues his/her family, workplace, community, society, or physical environment, either because the health of the ecological unit itself is at risk and therefore in need of intervention, or because the unit in some way causes or contributes to the health problems of its members.18 consequently, all people involved contribute with their abilites and disabilities, their history and inherited culture, their personal preferences, talents, habits of action and practice, thoughts and memories.20 due to this interdependendence of agents and layers, the basic premise of music therapy as an ecological practice is that change in one will ultimately lead to changes in the other. health and well-being are not viewed as an individual enterprise separate from improving the health of the ecological context within which the individual lives.18 within the last decades, these ideas have been captured particularly in the community music-, and community music therapymovement.18,19 as an ecological practice, music therapy follows where music’s natural tendencies lead: both inwards in terms of its unique effects on individuals, but also outwards towards participation and connection in communitas.19 to that end, a variety of music therapeutic approaches and settings are at disposal, ranging from individual music therapy in a therapy room or at the bedside of a person to group-driven singing or listening activities including family, healthcare staff or community members. common to all these approaches and settings is the way in which music’s capabilities unfold as a part of a broader ecology of people, places and cultural practices, and can locate and develop what is still healthy in a person or a situation, despite illness or deprivation.19 to follow a person’s social and musical needs in this way opens up for a ripple effect addressing the where and with whom music therapy can take place. in a pilot study on community music therapy in a neuro-rehabilitation unit, the music therapist wood21 developed a matrix model based on an understanding that the essence of any form of music mak [qualitative research in medicine & healthcare 2018; 2:7850] [page 147] article no nco mm er cia l u se on ly ing is the way in which music works within and between people. this includes individual music therapy in acute and in-patient settings, group music therapy in community medical settings, arts workshops, and concerts in community venues. all these different formats of music therapy create opportunities to follow people throughout their individual progression in rehabilitation. in the same way can music therapy be adapted to various end-of-life care scenarios. to meet the complex and changing needs of a person presenting with terminal illness as well as of the other people involved, the flexibility and permeability of music therapy as suggested in the matrix model21 is crucial. thus, music therapists accompany terminally ill over extended periods of time as well as in the very last hours of life. music therapy takes place in people’s homes or in institutions like hospices or a home for the elderly. music therapists take also part in funerals and accompany bereaved people in their grieving processes. music therapy as an ecological practice acknowledges and embraces the complexity of end-of-life care scenarios in a diverse ways and modes dependent on the people, places, and actions involved. moreover, it responds to a community’s spiritual and transcendental needs.19 thereby does music not work like a medication that leads to change in itself, but therapeutic meaning and change do unfold in the relationships forming and being formed by the people making music or listening to it in a certain context.19 in a participatory action research single-case study22 a couple where one of the partners was affected by amyotrophic lateral sclerosis, a neurodegenerative disease, developed and implemented home-based music therapy based on their musical preferences. they chose music listening as their favourite method, using the music streaming program spotify, as well as youtube. over the course of twelve weeks, the couple together with the music therapist created a musical atmosphere in the sessions in which both positive and challenging emotions could be expressed and shared. at the same time, ways of coping evolved and the couple could access own competencies and resources in a situation mostly determined by degeneration and loss. this led to a shift of focus towards the experience of regaining control, improved quality of life, and a strengthening of the couple’s own relationship and their relationship with the music therapist. music therapy as an ecological practice includes an awareness of context, with music therapy in and as context, as well as music therapy as interacting contexts.23as in the example with the couple who developed their own madeto-measure music therapy, the musical activities are taking place in context, with reference to an awareness of the surroundings of music therapy. in the case of the couple this was within the intimacy of the their own home. at the same time, music therapy served as context for the couple and the music therapist, pointing to the ecology of reciprocal influences within the sessions and their relationships with each other. and thirdly the ripple effect, connecting participants of music therapy to a wider community, refers to music therapy as interacting contexts, inviting an awareness of the ecology of reciprocal influences between various systems that music therapy is part of and relates to.23 as a potential strategy for how these essentials of music therapy practice can be transferred into music therapy research, i present in the following a conceptual framework for the implementation of community-based participatory music therapy research in end-of-life care scenarios consisting of two thematic clusters. i develop the clusters in a synthesis of the aforementioned specific challenges for research in end-of-life care scenarious, peculiarities of community-based participatory approaches as well as music therapy as ecological practice in end-of-life care scenarios. the clusters are thematically interwoven, overlap and refer to each other: i) participlinarity across contexts (pac): who forms the research community, suggesting participlinarity as the equal co-engagement of academics and non-academics with their diverse knowledge and competences? ii) music therapy as an ecological practice in end-of-life care scenarios (mecs): how does a community-based participatory music therapy research approach respond to ethical and practical challenges specific to end-of-life care scenarios? participlinarity across contexts (pac) – cluster i addressing the who? interdisciplinary collaboration and a more active role for users have been emphazied for the development of future healthcare services.5,7 to frame and implement this more comprehensively, the thematic cluster pac captures questions concerning definition of membership, level and scope of involvement, and responsibility in communitybased participatory music therapy research at the end of life. the key principles of both, community-based participatory research (table 1), and music therapy as an ecological practice (table 2) are woven into the formation of this cluster. i suggest the term participlinarity to capture peculiarities of the question who are deemed members in a participatory research project, and who defines this. with participlinarity i mean more than simply people with terminal illness, family members or lay carers joining academics and healthcare professionals collaboratively in a research project. rather is participlinarity a mutual, performed and collaborative activity within a broader community of people, forming a partnership approach to research in healthcare.24 i emphasize with the term participlinarity a co-engagement of academics and non-academics sharing a concern, a set of problems, or a passion about a topic. all partners involved acknowledge and equally value the others’ different ways of knowing. this forms the very basis for negotiation and decision-making processes and has the potential to lead to synergies and innovations beyond what one partner can achieve alone. in this way participatory community-based research may positively address effective communication around end-of-life [page 148] [qualitative research in medicine & healthcare 2018; 2:7850] article no nco mm er cia l u se on ly issues being a critical aspect of current patient care and medical practice.11 to further illuminate the idea of participlinarity as presented here, i consider the theory of learning by wenger-trayer et al.25 as relevant. wenger-trayer’s theory is founded on the assumption that engagement in social practice is the fundamental process by which we learn and so become who we are. people generate knowledge in diverse ways, from different sources and for different purposes. they engage in actions and negotiate meanings with one another in communities of practice. a community of practice is a group of people who share a concern, a set of problems, or a passion about a topic, and who deepen their knowledge and expertise in this area by interacting on an ongoing basis.25 within these communities of practice, bodies of knowledge evolve that are capable for the inclusion and integration of a diversity of competencies, values, ideals, realities and ways of knowing. pivotal to community-based participatory research (table 1) and learning as social practice alike is an epistemological understanding of knowledge that is generated from the experience of living and learning, involving social processes. thus, all members of a community have the competence to contribute a wide spectrum of knowledge, and act, react and interact with each other. such processes are enactive in nature, and emphasize the very doing of collaboration as a determining characteristic of participlinarity. in this way lived experience and academic ways of gaining knowledge can be shared on an equal footing between all partners on an ongoing basis. music therapy as an ecological practice (table 2) can serve as context for participlinary research processes, and connect participants in and across contexts. a music therapist can follow a person approaching the end of his/her life and his/her community of practice across contexts, and in accordance with the needs arising. the contexts can be linked through music, and the music therapist can bridge transitions from one context to the other, promoting continuity of care. at the same time, more comprehensive music therapy research can be conducted, integrating perspectives of all community partners on what music therapy can specifically do in various end-of-life care scenarios. mutual engagement, a joint enterprise and a shared repertoire stimulate the activities of the members of the community.25 furthermore, each member’s experience is shaped in a process of transformation, and at the same time shapes the practice of the community. in this way, co-learning and innovative capacity building are facilitated among all partners. the joint enterprise25 reflects the full complexity of mutual engagement and is the participants’ negotiated response to their situation. it belongs to them in a profound sense. transferring wenger-trayer’s ideas to communitybased participatory music therapy research in end-of-life care, the definition of outcomes, the research process, and the findings are the community’s response to the situation. in music therapy people mutually engage with each other, musical pieces represent their jont enterprise and shared repertoire. they are their musical response to their situation. thus, multiple determinants of health and disease, including institutional and home-based conditions as well as locally relevant problems concerning end-of-life care are addressed. in this way participatory community-based music therapy research is research with people.13 they themselves care for each other, their well-being, ideas and needs. naturally will partners in a participatory research project own and further develop modes of communication on an equal basis. they will develop a shared repertoire of ways of doing things, stories, styles, or concepts.25 specifically, they will develop a shared repertoire of songs and musical pieces in music therapy, as well as ways of sharing and performing them. in a cyclical and iterative process that includes ongoing evaluation of successes and obstacles, modes of communication between partners will be developed. this, in turn, may serve as a strategy to nurture long-term processes, sustainability and dissemination of findings and knowledge gained to all partners (table 1). the shared repertoire may refer to the heterogeneity of the group, while at the same time it forms a unique body of knowledge dependent on the end-of-life care scenario. hence, participlinarity means that membership in a participatory research project is determined by the fact that firstly, one is affected by end-of-life care, either as a person experiencing terminal illness, or as a relative, friend, specialized nurse, physiotherapist or researcher. and secondly, membership is hallmarked through an openness and readiness of each member, to deepen knowledge and expertise by interacting with others on an ongoing basis. [qualitative research in medicine & healthcare 2018; 2:7850] [page 149] article table 2. key principles of music therapy as an ecological practice in end-of-life care scenarios. music therapy as an ecological practice 1. recognizes and promotes the involvement of particular people and their particular relationships with families, friends and within a wider community 2. takes place in particular settings: at people’s homes, a hospice or a community venue 3. takes place at particular times: an appointed therapy session, or a more spontaneous music making including family members or nurses 4. uses particluar things: musical instruments and equipment, a location, a stage 5. promotes the performance of who people still are 6. accounts for a community’s transcendental and spiritual needs no nco mm er cia l u se on ly community-based participatory music therapy research in end-of-life care scenarios (mecs) cluster ii addressing the how? the second thematic cluster mecs addresses how a participatory approach to music therapy research might help to i) facilitate recruitment and involvement of terminally ill people presenting with often frail and rapidly changing conditions, ii) strategies for the identification of research topics and outcomes relevant for these people, and iii) an increasing preference for end-of-life care at home. facilitation of recruitment and involvement of terminally ill people in music therapy research people with terminal illness may struggle with very real practical challenges such as pain, anxiety, restlessness, poor concentration and limited attention span.26 their condition can change rapidly which in turn can impact recruitment and resources for participation over several weeks.26 in addition, relatives and carers may try to protect a person approaching the end of life from the perceived burden of being involved in research by not giving consent or by thwarting their participation in other ways.7a participatory community-based research approach has been found to potentially overcome some of the barriers to recruitment and also to promote long-term commitment by inviting community members to select a topic that is relevant to their specific needs.3 with respect to music therapy research, a community with its particular members will be invited to explore and implement their music at particular places and times, forming a community of music over time (table 2). the members will explore their needs and resources expressed in and through music within the context of music therapy. all members will be actively involved from the very beginning of a research project. such involvement of persons with lived experiences is increasingly viewed as key for the improvement and utility of health research and service innovation. the world health organisation and several countries have developed legislation strengthening patients influence, giving them greater control over the services offered.27 their perspectives have been widely acknowledged as being important for the definition of outcome measures as well as for casting light on mechanisms of therapeutic change.28 the involvement of people with lived experiences is associated with positive clinical outcomes, such as improved self-esteem and confidence, as well as therapeutic benefits resulting from increased social interaction and coordination of care.29 furthermore, funding institutions increasingly require research professions to state how they intend to involve people whose lives are implicated in the research project.15as a consequence, established research epistemology and the relationships between researchers and researched are questioned: who defines criteria for participation, scope and level of involvement ?11,15 in particular, there has been debate over whether it is ethical to include or exclude terminally ill people as participants in a research study.5,7 people approaching the end of their life may be seen to be too vulnerable to allow for valid and generalizable research. the population is heterogeneous with limited time for involvement, and the participants will not have the opportunity to benefit from the results of the research.30 on the other hand, not offering terminally ill people the opportunity to participate in research negates their right to have their voices heard.16while these individuals are unlikely to benefit directly from the knowledge generated by the research they are involved in, they may nevertheless experience subjective benefits from their participation. hopkinson et al.3 found in their participatory research that people with advanced cancer were not as overwhelmed by their participation as expected, but in fact welcomed the opportunity to contribute to finding solutions for others facing terminal illness. gysel et al.5 found in their review on views and experiences in research at the end of life that the majority of patients were willing to take part in research, with their families supporting this. also hospice staff and hospice organizations were found to have positive attitudes towards research participation. accordingly, do researchers need to co-engage with patients and their families, and design and implement projects collaboratively. strategies for the identification of research topics and outcomes relevant for all people involved community-based participatory research begins with a topic of importance to the community.7 the methods used are collaboratively tailored to the purpose of the research and the context and interests of the community. the direct involvement of all members in decision-making processes ensures that the research methods become consistent with the needs and services delivered to people approaching the end of life and their families. in concrete can music therapy as an ecological practice serve as the very place for people to express their needs and resources and thereby inform the determinantion of topics and outcomes relevant for research. in the example with the couple where one of the partners was affected by amyotrophic lateral sclerosis, they themselves developed and implemented home-based music therapy practice as well as relevant questions for subsequent research.22 the identification of research topics and outcomes pertinent for the people involved develops out of practice and feeds into a community-based participatory research design. in this sense, are music therapy practice and research not separate processes, but interdependent. research is practice-led and research questions will emerge, that might challenge conventional topics, measurement tools and questionnaires used so far. drawing upon community wisdom and ensuring that the research topic reflects a major issue identified by the community is seen as crucial for the improvement of the quality, validity and sensitivity of participatory approaches.7 however, this requires a great willingness on the part of members to disclose their personal views of the situation, their own opinions and experiences. to support the members, a safe space is needed.11 [page 150] [qualitative research in medicine & healthcare 2018; 2:7850] article no nco mm er cia l u se on ly in everyday life, openness about personal opinions is generally displayed towards family or close friends. this can be more difficult in institutional settings or with strangers. the fear of saying something wrong may prevent people from expressing their real views and opinions, especially when these opinions appear to contradict what others think. however, participatory research specifically seeks these dissenting views: they are essential to the process of knowledge production since they promise a new take on the subject under study, thereby enabling the discovery of new aspects of the topic. therefore, the research contract needs to be negotiated continually, including the boundaries of the communicative space, the type of participation and leadership expected, opportunities to express concerns and anxiety, and balance between order and chaos.11 music therapy as an ecological practice can provide a save space where particularities of all members, their individual abilities, dsiabilites, histories, resources, personal preferences, habits of action and practice can unfold (table 2). moreover, established roles and hierarchies are challengend and changed in music therapy. the music therapist aasgaard investigated the environmental impact of music therapy on the milieu of an oncological pediatric ward.31 one of his findings was, that doctors and nurses involved in music therapy sessions with the children and their families changed their established roles. in turn, to see the authorities becoming absorbed in some artistic or musical activity, helped to humanise the impression that patients and relatives have of those in power at the hospital, and the spirit of community was strengthened within the institution.31 community members may also be involved in the development of research instruments, as well as being trained as interviewers. the involvement of all project members in the process of writing and publishing has been suggested as a way to obtain more in-depth discussions, reflection and increased understanding of the overall process of conducting participatory research.32 consequently, a triangulation of multiple sources of data, methods, and investigators is specific for participatory research.11,15 both academic and non-academic members can be involved as co-authors in a writing team, respond to initial manuscript drafts, data analysis and interpretations. with respect to the dissemination of findings of music therapy research, this might have the format of a documentary report of a therapeutic process or the performance of a song composed by community members. in this sense might community-based music therapy research also stimulate new ways of dissemination of findings. this may help to improve the translation of findings into policy and practice, and enhance the uptake of the research findings by other communities.7 music therapy research across settings: responding to an increasing preference for end-of-life care at home end-of-life care scenarios take place in both institutional and home-based settings with a variety of professional and lay carers involved.33 through the changing conditions of a person with terminal illness, a change of setting in the course of the caring process – from home to hospital, or from hospital to a home for the elderly or a hospice – is most likely. as populations age, more and more people have indicated a preference for end-of-life care at home. in addition, policy makers have identified home care as cost-effective, shifting the care of patients from hospital to home.4,33 though demographic and social trends highlight the necessity to strive for quality end-oflife home care, home and (in-patient) hospice settings create different focuses for professionals and interdisciplinary team members, burdens and privileges for family caregivers, and control of the care plan.33 while interdisciplinary collaboration in people’s homes results in higher satisfaction, fewer clinic visits, fewer symptoms and overall improved health for patients, family caregivers need strengthening of their competences.34 the inclusion of family caregivers in music therapy has been highlighted as one specific beneficial feature of homebased music therapy.4 their competencies are strengthened and it opens up for new ways of family activities and quality time with each other.22 the ideas presented in the cluster pac and the ripple effect of music therapy activities allow for a direct inclusion of family members in music therapy, as well as a transfer and continuation of services across contexts. music therapy as an ecological practice can meet people wherever they are, adapt to a change of settings and accompany transfers from one context to another. this will inform and stimulate the implementation of participatory music therapy research across contexts. however, more research needs to be conducted with respect to the inclusion of family caregivers. this will promote the investigation of how such changes and transitions take place, what questions and challenges arise within the communities of practice, and how these can be met and answered. in the last section of this article, i will briefly discuss the two clusters pac and mecs with respect to consequences for future music therapy research. specifically, potential implications for educational strategies in researcher-training and for the facilitation of continuity of care across end-of-life care scenarios will be considered. discussion many of the challenges and benefits of participatory music therapy research mentioned in this article relate to wider societal, economic, institutional, or cultural issues going beyond the discipline itself. they question established traditional views, roles, hierarchies and expectations present in current healthcare systems and research more in general. however, on a system’s level, there is growing awareness for the importance of the involvement of patients, that means of people with lived experiences of illness. nevertheless, the actual implementation, trans [qualitative research in medicine & healthcare 2018; 2:7850] [page 151] article no nco mm er cia l u se on ly lating the rhetoric of empowerment and participation into practice, is lagging behind.8 in particular, patients have found it difficult to have real impact on decision making processes across all levels of health care services. their involvement is dependent on the extent of cooperation and assistance they actually get.35 against this background, i propose with the two thematic clusters pac and mecs potential strategies for a more systematic inclusion of people approaching the end of life in communities of practice with co-engagement and impact throughout all phases of a music therapy research project. the clusters are uniquely situated to address a range of methodological, ethical and practical challenges in music therapy research. they may help to identify innovative topics for future projects, relevant to all members of a research community. ethical and practical challenges are present in participatory research too, and there is a need for great awareness of these throughout any project. however, these challenges can be handled in various ways in the cases in question, as the research is participatory in nature and follows the premises of persons with terminal illness and their families. moreover, educational strategies are advised to researchers conducting community-based participatory research, as the high level of skill and responsibility required calls for training in both research processes and ethics.12 the emergent nature of social relationships with communities means that ongoing evaluation and researcher self-reflection are crucial.36 training and education is essential at all levels – for researchers, ethics committee members, administrators, and community participants. furthermore, israel et al.12 suggest, that curriculum in healthcare education covers the knowledge and skills necessary for professionals to be able to conduct participatory research. ethical challenges will not be entirely resolved but training and education are likely to lessen their scope.36 a unique pecularity of community-based participatory music therapy research is to account for continuity of care. both thematic clusters illustrate the potentials for this in manifold ways. continuity of care is considered patients and professionals alike to be an essential feature of highquality healthcare.37 biringer et al.37 explored peoples’ experiences and perceptions of continuity of care within mental healthcare. they developed five themes along continuums from poor to good experiences of continuity of care: relationship – from experiencing frequent setbacks and anxiety due to breaks in relationships, to feeling safe in an ongoing personal relationship; timeliness – from experiencing frustrating waiting times with worsening of problems, to getting help when needed; mutuality – from having a one-sided struggle, to a situation in which both professionals and service users take initiative; choice – from not having the opportunity to make practical arrangements within the context of one’s everyday life, to having an array of support options to choose from; knowledge – from feeling confused and insecure due to not knowing what is happening, to feeling safe thanks to clear information about what is going to happen. the presentation of the themes on a continuum of good and bad experiences with continuity of care holds a mirror up to the challenges and opportunities of music therapy research in end-of-life care scenarios as presented in this article. it is therefore vital to turn attention to the importance of relationships, mutuality and co-enagegement, shared knowledge, timing of treatment and choice-making, in order to implement inclusion and participlinarity in future music therapy research. in this way may the conceptual framework i propose in this article serve as a theoretical basis to further promote the implementation of participatory music therapy research projects in end-of-life care scenarios. conclusions in this methodological article i developed a conceptual framework for community-based participatory music therapy research in end-of-life care scenarios. from my perspective as a music therapy practitioner and researcher, this is one promising strategy and response to ethical and practical challenges, handling complexity and advancing integration of perspectives. though music therapy practice and research are part of present healthcare systems, i do not suggest any generalizations for research in the area of end of life beyond the scope of this framework. the framework may first of all promote comprehensive and integrative future music therapy research, and also facilitate further investigation of what music therapy can do in end-of-life care scenarios. certainly, the framework is in the early stages of development. a next stage will comprise its incorporation into specific music therapy research projects. meeting complexity with collaboration across contexts will contribute to further development and modification of the framework. references 1. archie p, bruera e, cohen l. music-based interventions in palliative cancer care: a review of quantitative studies and neurobiological literature. support care cancer 2013;21: 2609-24. 2. schmid w, rosland jh, von hofacker s, et al. patient’s and health care provider’s perspectives on music therapy in palliative care – an integrative review. bmc palliat care 2018;17:32. 3. hopkinson jb, wright dn, corner jl. seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life. palliat med 2004;19:532-7. 4. schmid w, ostermann t. home-based music therapy a systematic overview of settings and conditions for an innovative service in healthcare. bmc health serv res 2010; 10:291. 5. gysels mh, evans c, higginson ij. patient, caregiver, health professional and researcher views and experiences of [page 152] [qualitative research in medicine & healthcare 2018; 2:7850] article no nco mm er cia l u se on ly participating in research at the end of life: a critical interpretive synthesis of the literature. bmc med res methodol 2012;12:123. 6. world health organization (who). who definition of palliative care. available from: http://www.who.int/cancer/palliative/definition/en/ accessed: 13.08.2018. 7. riffin c, kenien c, ghesquiere a, et al. community-based participatory research: understanding a promising approach to addressing knowledge gaps in palliative care. ann palliat med 2016;5:218-24. 8. god kvalitet – trygge tjenester — kvalitet og pasientsikkerhet i helseog omsorgstjenesten available from: https:// www.regjeringen.no/no/dokumenter/meld-st-10-20122013/ id709025 accessed: 10.08.2018. 9. hockley j, froggatt k, heimerl k. participatory research in palliative care. actions and reflections. oxford: oxford university press; 2013. 10. belone l, lucero je, duran b, et al. community-based participatory research conceptual model: community partner consultation and face validity. qual health res 2014; 26:117-35. 11. bergold j, thomas s. participatory research methods: a methodological approach in motion. qual soc res 2012;13. available from: http://www.qualitative-research.net/index. php/fqs/article/view/1801/3334 12. israel ba, schulz aj, parker ea, et al. review of community-based research: assessing partnership approaches to improve public health. ann rev public health 1998;19:173-202. 13. reason p, bradbury h. introduction: inquiry and participation in search of a world worthy of human aspiration. in: reason p, bradbury h, eds. handbook of action 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for music therapy 2006;6. 22. schmid w, ek knutsen ms. musikk som helseresurs i hverdagen for hjemmeboende pasienter. in: stige, b, ridder hm, eds. musikkterapi og eldrehelse. oslo: universitetsforlaget; 2016. pp 79-87. 23. rolvsjord r, stige b. concepts of context in music therapy. nord j music ther 2015;24:44-66. 24. stige b. health musicking: a perspective on music and health as action and performance. in: macdonald r, kreutz g, mitchell l, eds. music, health, and wellbeing. oxford: oxford university press; 2010. pp 183-195. 25. wenger-trayer e, fenton-o’creevy m, hutchinson s, et al. learning in landscapes of practice: boundaries, identity, and knowledgeability in practice-based learning. london-new york: routledge; 2015. 26. warth m, kessler j, hillecke tk, bardenheuer hj. music therapy in palliative care. deutsches arzteblatt int 2015;112:788-94. 27. omeni e, barnes m, macdonald d, et al. service user involvement: impact and participation: a survey of service user and staff perspectives. bmc health serv res 2014;14:491. 28. vahdat s, hamzehgardeshi l, hessam s, hamzehgardeshi z. patient involvement in health care decision making: a review. iran red crescent med j 2014;16:12454. 29. wohleber am, mckitrick ds, davis se. designing research with hospice and palliative care populations. am j hospice palliat med 2012;29:335-45. 30. wright dn, hopkinson jb, corner jl, foster c. how to involve cancer patients at the end of life as co-researchers. palliat med 2006;20:821-7. 31. aasgaard t. music therapy as milieu in the hospice and paediatric oncology ward. in: aldridge d, ed. music therapy in palliative care. new voices. london: jessica kingsley publishers; 2000. pp 29-42. 32. clarke cl, wilkinson h, watson j, et al. a seat around the table: participatory data analysis with people living with dementia. qual health res 2018;28:1421-33. 33. lysaght hs, barg fk, strumpf n, ersek m. same agency, different teams. perspectives from home and inpatient hospice care. qual health res 2014;25:923-31. 34. reinhard sc, given b, petlick nh, bemis a. supporting family caregivers in providing care. in: hughes rg, ed. patient safety and quality: an evidence-based handbook for nurses. rockville (md): agency for healthcare research and quality (us); 2008. 35. storm m, hausken k, knudsen k. inpatient service providers’ perspectives on service user involvement in norwegian mental health centres. int j social psychiatry 2011;57:551-63. 36. wilson e, kenny a, dickson-swift v. ethical challenges in community-based participatory research: a scoping review. qual health res 2017;28:189-99. 37. biringer e, hartveit m, sundför b, et al. continuity of care as experienced by mental health service users – a qualitative study. bmc health serv res 2017;17:763. [qualitative research in medicine & healthcare 2018; 2:7850] [page 153] article no nco mm er cia l u se on ly layout 1 introduction a cancer diagnosis is an unexpected life event producing fear and uncertainty in those affected. ovarian cancer patients/survivors experience significant levels of uncertainty because of unspecified disease symptoms (e.g., gas, bloating and constipation), late-stage diagnosis (i.e., stages iii or iv), severe treatment side effects (e.g., neuropathy), high recurrence rate,1-4 and also because treatment does not guarantee cure.1 in addition to that, location of the ovaries and fallopian tubes (i.e., primary organs associated with ovarian cancer) in the interior of the female body have contributed to seeming invisibility of the disease5 and impacted how affected women communicate about and respond to risk and actual disease.6 research suggests that ovarian cancer patients/survivors manage disease-related uncertainty by avoiding negative information and individuals with worse disease symptoms.4,7 similar research by manne and colleagues8 also reveals that gynecologic cancer survivors, including ovarian cancer survivors, avoid disclosing concerns pertaining to death, disease progression, and sexual functioning to family and friends.8 these research findings focus on topic avoidance (ta) among ovarian cancer patients/survivors, given that concerns about death and recurrence are common among this population.9 women diagnosed with late-stage ovarian cancer do not openly express concerns about physical and emotional symptoms in order to protect loved ones who may be in denial about disease prognosis, meaning there is often informal careopenness and topic avoidance in interpersonal communication about ovarian cancer: an uncertainty management perspective dinah a. tetteh,1 najma akhther2 1department of communication, arkansas state university, jonesboro, arkansas; 2department of communication, wayne state university, detroit, michigan, usa abstract this study examined openness and topic avoidance in interpersonal communication about ovarian cancer. guided by the uncertainty management theory, the researchers analyzed qualitative data from 28 ovarian cancer patients/survivors and found openness and topic avoidance to be complex communication behaviors which are connected to patients/survivors’ uncertainty. participants appraised uncertainty about disease prognosis and effectiveness of treatments as a threat; thus, they avoided topics such as treatment side effects and fears about death and disease recurrence to manage such uncertainty. furthermore, findings showed that communication about ovarian cancer is layered with degrees of openness and avoidance relative to respective audiences and changing illness trajectories. overall, the findings indicate connections between interpersonal communication about ovarian cancer and uncertainty management practices, suggesting that intervention efforts should help cancer patients/survivors and relational others practice sensitivity when discussing topics such as death and dying. correspondence: dinah a. tetteh, department of communication, arkansas state university, p.o. box 1930, state university, 72467 jonesboro, arkansas, usa. tel.: 870.972.2711; fax: 870.972.3321. e-mail: dtetteh@astate.edu keywords: communication; openness; ovarian cancer; topic avoidance; uncertainty. contributions: dt conceived the idea for the project, collected and analyzed data, and also wrote the manuscript. na assisted with data analysis and writing of the manuscript. conflict of interests: the authors declare no conflict of interest. further information: the article was presented at the 2019 national communication association convention held in baltimore, md. data for this study were collected at bowling green state university, where the first author received her phd, while the article was written at arkansas state university, where she is an assistant professor and the second author was a graduate student. availability of data and materials: all data generated or analyzed during this study are included in this published article. ethics approval and consent to participate: the ethics committee of bowling green state university, bowling green, oh approved this study (ethics approval 686884). the study is conformed with the helsinki declaration of 1964, as revised in 2013, concerning human and animal rights. all patients participating in this study signed a written informed consent form for participating in this study. informed consent: written informed consent was obtained from a legally authorized representative(s) for anonymized patient information to be published in this article. received for publication: 29 september 2020. revision received: 20 october 2021. accepted for publication: 22 november 2021. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2021 licensee pagepress, italy qualitative research in medicine & healthcare 2021; 5:9376 doi:10.4081/qrmh.2021.9376 [page 70] [qualitative research in medicine & healthcare 2021; 5:9376] qualitative research in medicine & healthcare 2021; volume 5:9376 no nco mm er cia l u se on ly giver denial and lack of patient disclosure at the end-stage of the disease.10 the need to protect loved ones is also a reason why ovarian cancer survivors sometimes disclose disease-related concerns to friends instead of family members.4 lack of open communication can negatively impact survivors’ relational quality1 and lead to psychological distress in survivors (e.g., anxiety and depression).10 dale brashers’ uncertainty management theory (umt)11 has been used in the analysis of patient experiences in health care and medical settings, including the experiences of people with acute and chronic illnesses (e.g., cancer and diabetes)12,13 and those predisposed to certain cancers.14 thus, the theory is an appropriate framework to use to investigate communication challenges experienced by ovarian cancer patients/survivors and how they communicatively manage disease-related uncertainties. the umt considers uncertainty a common human experience that can arise due to ambiguous and unpredictable events or insufficient information and suggests that communication is central to the management of uncertainty.11,15 in the illness context, uncertainty can arise due to complexity of illness, insufficient and contradictory information, and inability to integrate new information into existing worldviews and belief systems.17,18 the theory assumes that individuals evaluate uncertainty for its meanings (i.e., as an opportunity, a danger, or a chronic situation) and that such appraisal and the associated emotional responses (positive, negative, or neutral) determine strategies used to manage uncertainty, including information seeking or avoidance, adaptation, and social support.15 avoidance includes strategies such as distracting oneself from thinking about a health threat, denying that problematic circumstances exist, disengaging from interactions or media that remind one about a threat, and controlling conversations.16 it can happen unconsciously (i.e., automatically) or consciously (i.e., nonmechanically) when one wants to disengage from information that is threatening.11 information seeking or avoidance allows individuals to maintain, reduce, or increase uncertainty.16 uncertainty appraised as a danger/threat is associated with emotions such as anxiety or fear, which can be managed by avoiding or seeking information. conversely, uncertainty appraised as an opportunity can produce feelings of hope and optimism, which can be maintained or increased by information seeking or avoidance.11,15,19 thus, whether information seeking or avoidance is adopted depends on which option provides the most hope20 and whether the goal is to reduce, increase, or maintain uncertainty.19 a recent study by peng and colleagues21 suggested that cancer-related beliefs such as worry, information overload and fatalism can influence individuals’ need and preferences for uncertainty management strategies (e.g., information seeking or avoidance), and a meta-analysis of uncertainty and information management in the illness context by kuang and wilson22 also showed a consistent and positive association between illness uncertainty and information avoidance. interpersonal communication about ovarian cancer is a useful context to investigate the relationship between openness, ta, and uncertainty management because of prevalence of ta in communication about ovarian cancer,4,23 ubiquity of uncertainty in the ovarian cancer context,1,3 and centrality of information seeking and avoidance to uncertainty management.11 thus, the present study analyzed motivations for ta among ovarian cancer patients/survivors, how patients/survivors communicate openly about their cancer experiences with relational others, and how ta serves as an uncertainty management strategy. this study is significant and unique. first, by investigating uncertainty, openness, and ta together in the specific context of cancer, this study provides evidence for connection among these communication behaviors (i.e., uncertainty, openness, and ta). second, the focus on patients’ and/or survivors’ individual accounts is another way this study contributes to existing scholarship on openness and ta in cancer communication. although some past studies24,25 have included cancer survivors/patients as participants, the majority of research on openness and ta in cancer communication used data from a relational dyad (e.g., a cancer patient and a partner) or caregivers and family members. while the current study recognizes the importance of multiple voices in understanding nuances of the topic, we believe that the perspectives of patients/survivors are sometimes lost when multiple voices are presented. hence, there is a need to highlight their views to provide a more holistic understanding of openness and ta in communication about cancer. further, this study extends the extant literature on openness and ta in cancer communication by focusing on ovarian cancer. ovarian cancer presents a useful context to examine this topic because, as stated earlier, characteristics of the disease can present communication challenges for those affected. thus, it is important to understand how patients/survivors manage disease-related uncertainties so that research-driven communication interventions can be designed to better serve that population. openness and avoidance in cancer communication openness and avoidant communication are complex communicative behaviors. goldsmith, miller and caughlin26 define ta as “deciding not to discuss particular issues and/or withholding some details of particular issues” and openness as “disclosure of thoughts, information, and/or feelings” (p. 62). neither openness nor ta is inherently good or bad, as both forms of communication have benefits and consequences for individual and relational wellbeing. how these benefits and consequences are perceived and the resulting impact on relationships depend on the nature of communication, the communicator, the relationship, and [qualitative research in medicine & healthcare 2021; 5:9376] [page 71] article no nco mm er cia l u se on ly the sociocultural context.25 openness and ta are intertwined, such that open communication by an individual (e.g., the cancer patient) can lead to less perceived ta.27 even though most individuals consider open communication a valuable, pro-social behavior, openness is understood differently by different people.28 recent work by goldsmith and miller28 points to varied iterations and dimensions of open communication by cancer patients and relational partners. openness varies by topic and individual and changes over time. goldsmith and miller29 found that among cancer patients and relational partners, some topics were discussed more openly and freely because they are easy to talk about, whereas others were difficult to discuss and are discussed only occasionally. moreover, some topics (e.g., diagnosis and telling other people about the cancer) might be resolved in a single conversation and thus may not be brought up again, whereas others are discussed when prompted by a situation. for example, treatment decisions are discussed more frequently and openly because they entail mainly facts and medical information; issues related to sex and appearance are discussed less frequently because they are difficult to talk about; death is usually difficult and discussed once (partly because cancer patients and relational partners do not want to upset one another and also because it is difficult to discuss what would happen to their children if the cancer becomes terminal); and topics related to finances, uncertainties, work, and identity are discussed occasionally.29 further, as the level of uncertainty about cancer changes, the ensuing level of communication about issues causing uncertainties also changes.29 thus, because of variability in how openness is enacted, scholars suggest talking about degree of openness between a relational pair instead of whether or not they are “open.”28 the level of openness and ta employed in a communication context depends on the situation. for instance, with life-threatening illnesses such as cancer, illness characteristics such as severity, duration and status of recurrence, and the relationship between those affected and relational others can impact enactment and outcomes of openness or ta.26,30 emotional exhaustion and depression resulting from caring for a patient with terminal cancer can also negatively impact how caregivers openly communicate about illness and death.30,31 while there is generally low level of ta between cancer patients/survivors and relational others,32 when ta occurs, spouses and relational others are more likely to engage in avoidance.32,33 relational others avoid communication due to a multitude of reasons, including selfand other-protection, privacy, to maintain hope and normalcy, when the talk is deemed inappropriate or unnecessary, or due to perceived lack of efficacy in appropriately broaching the topic. 25,26,34 similarly, perceived lack of reciprocity and poor prognosis can hinder open communication between survivors and partners about cancer-related topics.34 ta can negatively impact relational satisfaction and lead to anxiety and depression in cancer patients/survivors.25,33 topics commonly avoided in the cancer context include information and emotion-laden issues such as prognosis, death and dying, sexuality, and being a burden.32,34,35 however, there are differences between survivors and relational others in terms of cancer-related topics avoided. for instance, whereas survivors can openly talk about topics such as death and prognosis, relational others often avoid such topics due to perceived lack of efficacy.34 scholars have drawn on the concept of ownership of private information to explain discrepancy in ta between cancer patients and relational others. they suggest that relational partners perceive cancer patients as primary owners of cancer-related information, hence their hesitation to openly discuss certain issues related to the cancer experience.27,34 existing scholarship on openness and ta in the broader cancer context provides some insights into the nature of communication about ovarian cancer. some past studies have explained why ovarian cancer patients/survivors avoid disease-specific topics4,23 and why the public generally avoids talking about the disease.5 however, to our knowledge, there is no known research that examines ta and openness in the ovarian cancer context and how patients/survivors use these communication behaviors to manage disease-related uncertainty. thus, this study aims to explore the connection between openness, ta, and uncertainty management in the ovarian cancer context and asks these research questions: “how are openness and ta enacted by ovarian cancer patients/survivors during interpersonal communication about their cancer experiences?” and “how are openness and ta uncertainty management strategies relied upon in interpersonal communication about ovarian cancer?” materials and methods participants participants included 28 ovarian cancer survivors in northwest ohio and southern michigan in the united states. they ranged in ages from 23 to 84 years (average age was 56). twenty-seven identified as caucasian, and one identified as mexican american. eleven participants were diagnosed at stage iii, six at stages i and ii each, three at stage iv, and two were unsure of the stage of disease. the majority of participants were married (18; 64%), and they were all heterosexual. eighteen participants had children (both biological and adopted) and 10 had no children. eleven (39%) participants were premenopausal at the time of diagnosis, and 17 (61%) were post-menopausal. the disease had recurred at least once in eight participants (six of whom were in treatments or about to begin treatments when data were collected); 20 participants had never had a recurrence. one participant had terminal disease and had stopped treatments at the time data were collected. [page 72] [qualitative research in medicine & healthcare 2021; 5:9376] article no nco mm er cia l u se on ly procedure after approval for the study was granted by the bowling green state university research ethics board (ethics approval number 686884), the first author recruited participants with the help of cancer support organizations in northwest ohio, including the cancer connection of northwest ohio and the ovarian cancer connection in toledo, ohio. the organizations sent notices about the study including information about an incentive of a $20 gift card for participation to their mailing lists, and interested women contacted the first author to set up interviews. over the course of five months (march-august 2015), 28 eligible women contacted the researcher to be interviewed. women were included in the study if they were at least 18 years old and had been diagnosed and treated for ovarian cancer. interviews took place at the convenience of participants who provided written consent before the interviews took place. the semi-structured, in-depth interviews ranged in length from 45 to 120 minutes and took place face-to-face (19 participants), over the telephone (8 participants), or via facetime (1 participant). the interview guide included open-ended questions such as “when your cancer experience comes up in conversations with family, friends, and acquaintances, how do you talk about it?” and “do you have any difficulties talking about your cancer experience? if so, what are they?” (see appendix a for interview guide.) interviews were audio-taped and transcribed verbatim for analysis purposes. data saturation was reached as a result of rich data facilitated by an adequate (i.e., large) and appropriate sample (i.e., knowledgeable informants).36,37 analysis data were analyzed deductively using braun & clark’s38 thematic analysis procedure. as part of the open coding process, the authors read all interview transcripts to get familiar with the data and then generated initial codes through line-by-line reading of transcripts and highlighting text that suggested openness and ta.39 we adopted goldsmith, miller, and caughlin’s26 definitions of ta and openness. (see our discussion of the literature above for their definitions.) next, the authors grouped codes into categories based on how well they matched our definitions of openness and ta and then analyzed the categories into themes (e.g., openness and ta) and sub-themes (e.g., tailoring openness to audience and reasons for openness, protecting loved ones, unbeneficial disclosure, and making personal sense of cancer. (see table 1 for examples of codes and categories.) back and forth readings of themes and the entire data helped the authors revise and refine themes38,39 and construct a coherent narrative of openness and ta in interpersonal communication about ovarian cancer. [qualitative research in medicine & healthcare 2021; 5:9376] [page 73] article table 1. examples of codes and categories. data extract initial codes categories we are an open family; we talk about everything. so we talked about this issue as well and that really helped. when you get things out in the open, you’re not guessing what people are thinking. (patient/survivor diagnosed at stage iii) i can’t say i really kept anything from them. i didn’t have a lot of side effects from my treatments; whereas if they would have seen me showing a lot of side effects where mom is sick and vomiting, i think it would have been a whole different issue. (patient/survivor diagnosed at stage ii). i didn’t hold back. i would let them know my fears. i don’t say too much in front of my children that “i’m scared” or “i’m going to die from this disease,” or “it is going to get me.” i don’t say those things to them because i don’t want much sadness in their world as much as possible. ** there is only a handful of people i feel i can entirely open up to and tell how scared i am; everybody else [my family, my sister] i want to protect them a little bit... it’s years of being with them; they are good friends. you show your vulnerability a little bit because you don’t feel that you’re going to be judged (patient/survivor diagnosed at stage ii) 1. family communicated openly about everything 2. helpful to talk openly about cancer experience with family 3. communicating openly helped clear confusion and gets everyone on the same page 1. did not keep anything about cancer experience from children 2. talked openly about cancer experience with children 3. having few treatment side effects helped with communicating openly about cancer experience with children 1. did not hold back anything about her experience when talking with family 2. would let family know about her fears about did not reveal too much of her fears to her children 3. wanted to protect children from sadness ** 4. could be completely open and honest about how she felt with close friends but not with family members. 5. wanted to protect family members by not being open about every aspect of her cancer experience 6. being open amounts to being vulnerable family communication pattern and openness treatment side effects and openness audience and level of openness or ta audience impacted level of openness or ta reason for ta: to protect loved ones openness requires vulnerability to be continued on next page no nco mm er cia l u se on ly [page 74] [qualitative research in medicine & healthcare 2021; 5:9376] article table 1. continued from previous page. data extract initial codes categories i didn’t discuss my diagnosis with my mom. my mom has alzheimer’s disease so she still does not comprehend cancer. (patient/survivor diagnosed at stage iii) i never told my mother that i had cancer because she was still grieving the loss of my brother. i explained to her that i was going to do d&c [dilation and curettage]. until the day she died i never told her i had cancer; i just did not see any point in giving her that. (patient/survivor; not sure about disease stage) i didn’t tell them everything in-between because i wanted them to be sophomores and juniors and not worry about their mom dying or anything. ** when i talk to my male co-workers, i tell them about the signs and symptoms and what i went through. i probably am more open with people that don’t know me because there’s that wall that goes up where i want to protect the people that know me [family]. i guess i assume that since my family was there they know what i went through. they saw what i went through: 25 staples on my stomach; i came home [from hospital] with drainage tubes because i was still draining. but i wanted to be okay to them. (patient/survivor diagnosed at stage i) i don’t tell my mom a lot [about my cancer experience]; but if my cancer were to come back again i will tell her. for instance i was told i had a problem with my brain but i won’t tell her; my husband knows but i won’t tell her. that is my way of protecting her, to shield her. (patient/survivor diagnosed at stage iii) we’re pretty open; we talk about everything. we talk about the pain, the funeral and everything. everybody knows what i want, which is good. it is hard too. my parents don’t want to talk about some of it which is understandable; i’m their only child and they are in their 80s; it’s really tough on them. (patient/survivor diagnosed at stage ii) at first, i wouldn’t tell my parents a whole lot about what was going on because i know how bad it hurts them; i felt bad that i was the one who was ill so i kind of tried to protect them. and i remember one day just sitting around and talking with my mom and i was saying “well, if there’s any saving grace to this, it is me that has cancer and not one of my girls” and she looked at me and said, “how do you think that i feel?” it was at that moment that i realized that it didn’t matter if i was a woman in my 40s; i was still their daughter. so i started letting them in more. i started telling what the doctor said, the good and the bad because i realized that by shutting them out i wasn’t helping them. (patient/survivor diagnosed at stage iii) 1. did not talk about diagnosis with mom who has alzheimer’s 2. mother’s health status impacted level of openness and ta about cancer experience 1. did not talk about diagnosis with mom 2. mom lost son and was grieving 3. wanted to protect mom by not disclosing diagnosis 4. mother’s health status impacted level of openness and ta about cancer experience 1. did not tell children everything about cancer experience 2. did not want her cancer experience to interfere with children’s childhood experiences 3. talked openly about different aspects of her experience with different people 4. less open with family about treatment side effects in order to protect them 5. family went through cancer experience with her and that impacted what aspect of her experience she discussed with them because they supposedly already know 1. did not disclose everything about cancer experience to mom 2. wanted to protect mom 3. talked openly about different aspects of her experience with different people 1. family communicates openly about everything 2. her parents did not want to talk about her impending death 1. did not initially disclose everything about her cancer experience with parents 2. wanted to protect parents 3. began to be open with parents when she realized that not disclosing was rather hurting them audience and level of openness or ta reason for ta: to protect loved ones openness/disclosure will not be beneficial reason for ta: to protect loved ones audience and level of openness or ta audience and level of openness or ta reason for ta: to protect loved ones audience impacted level of openness or ta reason for ta: to protect loved ones audience impacted level of openness or ta openness is a process that begins with ta reason for ta: to protect loved ones no nco mm er cia l u se on ly the authors met consistently to deliberate and also to select quotes from participants to illustrate themes. the discussion sessions and use of illustrative quotes from participants helped enhance trustworthiness of the findings.40-42 it is important to keep in mind that the data were self-reported by participants; thus, the findings represent the researchers’ analytical interpretations of participants’ descriptions of the ways they thought they acted and of the reasons they gave for their actions. results the results showed that for the most part, ovarian cancer patients/survivors communicated openly about disease diagnosis, prognosis, and treatment side effects when talking about their experiences with people in their social networks. however, the degree to which they were open about their experiences depended on who they were communicating with (i.e., audience), and on the existing patterns of communication with the audience (i.e., reasons for openness). participants also avoided talking about aspects of their experiences to protect loved ones as uncertainty about disease prognosis increased (i.e., protecting loved ones), when they perceived that the audience for the disclosure was young children or sick/aging parents (i.e., deeming disclosure unbeneficial), and also when they needed to make personal sense of the cancer experience first (i.e., making personal sense of cancer). see figure 1 for an illustration of the relationship between openness, ta, and uncertainty management. in the sections below, we discuss openness and its sub-themes followed by ta and its sub-themes. [qualitative research in medicine & healthcare 2021; 5:9376] [page 75] article figure 1. openness, ta and uncertainty management in interpersonal communication about ovarian cancer. no nco mm er cia l u se on ly openness participants explained using varied degrees of openness when disclosing thoughts and feelings to other people. this meant that they readily talked about some aspects of their experiences more than others, and they also were more open with some individuals than with others. a combination of issues impacted how open participants were about their experiences. tailoring openness to the audience participants negotiated how openly they talked about their experiences depending on the topic they were discussing and whom they were talking to. participants who responded well to treatments and those with adult children stated that they were very open about the disease’s prognosis with their adult children. for instance, a participant who was diagnosed at stage ii and whose disease had never recurred noted that she was able to express how she felt because her children were old enough to understand cancer, and she also did not have severe treatment side effects: being that the children were older at the time, i know they knew that people die from cancer. i didn’t have a lot of side effects from my treatments; whereas if they would have seen me showing a lot of side effects where mom is sick and vomiting, i think it would have been a whole different issue. also, another participant who was diagnosed at stage ii and had adult children said she waited until a scan confirmed a mass on her ovary before disclosing her diagnosis to her children. she said, “i didn’t call them [i.e., children] right away when they found the mass. i waited until i had the ct [computed tomography] scan and it showed that there was a mass on the ovary.” this woman’s children knew she had problems with her hip and was in physical therapy, but when her family doctor referred her to a gynecologic oncologist, she decided to wait until she knew the diagnosis before telling her children. participants with young children also reported communicating openly about the illness, but not “dwelling” on difficult topics such as death. for example, a participant who was living with recurrent ovarian cancer and had two daughters aged 16 and 11 explained being “honest” about the prognosis with her children but not “dwelling on it.” she said, “they know the reality of this disease, but i don’t dwell on it. i don’t sit there and talk about death and dying or anything like that.” openly discussing less emotionally-laden topics and purposefully avoiding emotionally-dense ones was the communication strategy this woman adopted because “the children saw me very, very ill on some days where i couldn’t get out of bed.” she said each time the disease recurred, she avoided dwelling on the possibility of dying when talking to her children; instead, she tried “to be more present in their [her daughters’] lives and more aware of everything that’s going on.” along similar lines, another participant who was diagnosed at stage iii described her cancer as “peas” for her nine-year-old son who was too young to understand a cancer diagnosis: we did not want to call it “cancer” in front of my smallest child who was nine years old. we told him that i just had some infections in my stomach, and i am going to have surgery, and it is going to make mom’s hair fall off. we did not call it “cancer,” so we thought of something that i really do not like and i hate peas so we called it “peas.” mom has peas. this participant said when the doctor was explaining the diagnosis and treatments to her, all she could think about was how to disclose the news to her three children, aged 21, 15, and nine because “when kids are young and they hear ‘cancer,’ they immediately think that somebody has died.” she explained further that when she was undergoing treatments, “i didn’t want my children to see me sick; so i never allowed it. i made sure i got up every day, took a shower, and put make-up on even though i wasn’t working.” further, seven participants mentioned that they talked openly about disease facts, including symptoms and treatment side effects, with acquaintances and co-workers to educate them about the disease, but did not discuss these issues with family members because of an assumption that they already knew these facts by witnessing participants’ experiences. for instance, one woman explained: when i talk to my co-workers, i tell them about the signs and symptoms [of the disease] and what i went through. i probably am more open with people that don’t know me. i guess i assume that since my family was there, they know what i went through. another participant also stated using a similar strategy when discussing her experience: i tell them [i.e., acquaintances] about the worst moments of my life at the time, not to exaggerate though, because i want to wake them up. but the people around me [i.e., family and close friends] do not have to be reminded because they have seen it. similarly, another woman explained, “i express more facts to people whom i don’t know and weren’t with me throughout my experience; but with family and friends, it’s an emotional conversation.” a different participant also said she would “add emotions and show my vulnerable side” when recounting her cancer experience to her best friends. this woman’s friends missed specific details about her cancer experience because they lived far away and did not go through the diagnosis and treatment experience with her: [page 76] [qualitative research in medicine & healthcare 2021; 5:9376] article no nco mm er cia l u se on ly they don’t know those details like driving to a radiation and having to pull to a side of the road to throw up and then continuing to finish that drive; they don’t know because they did not experience that with me. this participant had relocated to a new city to take care of her mother, who passed away a few months before the participant’s diagnosis. her example suggests that participants sometimes left out some details about their cancer experience not on purpose, but because those details had to be experienced in the moment. additionally, 20 participants explained that they “read” their audience to determine how much information to share. for instance, one woman said: my next-door neighbors could have cared less. they see me walking the dogs and ask how i’m doing; they know i have ovarian cancer but don’t want to know more... i try to read people to figure out if they want to know more; they might not. this woman also explained that when she complained about a treatment side effect of neuropathy making it impossible for her to return to work, her friend retorted, “what do you care? you’re alive!” she said from then on, she only shared specific details about her experience with people who genuinely wanted to know. another woman, who was diagnosed at stage ii, said when talking about her cancer experience with people, she usually provided general information, “and if they want to know anything [in detail] i tell them what happened.” one more participant, diagnosed at stage iii, also mentioned that she used people she was communicating with as a “cue or guide” to determine how much to disclose because “some people don’t want to know all the gory details” of her experience. reasons for openness it was also evident from participants’ narratives that the degree to which they were open about their experiences depended on issues such as existing patterns of communication in families. participants whose families communicated openly about issues expressed holding nothing back when discussing their cancer experiences with family members. for example, one participant noted, “we are an open family; we talk about everything. so we talked about this issue as well and that really helped. when you get things out in the open, you’re not guessing what people are thinking.” this woman, who was diagnosed at stage iii, openly discussed all aspects of her experience with her family in order to quell speculations about what was unknown about the disease. she mentioned that she and her husband also discussed with her adult children the possibility of her dying from the disease. another participant also stated that she shared the same details about her experience with everyone to keep her story consistent: i decided i would be transparent about it. i didn’t want to be in a situation where i had to keep track of what i told my parents and my best friends; i just told the same story to everybody. this woman was single and lived alone during her treatments. conversely, family communication patterns were also a reason for ta where family members avoided discussing participants’ cancer experiences in line with informal family disclosure rules and also because participants did not want the topic to be discussed. such was the case with one woman diagnosed at stage i who said she could not remember: one instance that it [her cancer ordeal] ever came up in conversations or that my sons ever said a word about it since it happened; i don’t think my husband even ever said a word about it since it happened. she explained that her family approached her cancer experience in that manner because she herself did not want to talk about it: “they know me. mom says this is the way it is, and we move on.” it is worth noting that although all participants considered their families as open communicators, it was clear from their narratives that they carefully disclosed their diagnosis, prognosis, and treatment side effects taking into consideration the ages of children, appropriateness of location and time, and health states of other members of the family, including aging parents. another issue that encouraged openness was when participants felt a sense of space and freedom to be vulnerable while being open. participants explained that they needed a non-judgmental space to express themselves because openly discussing their feelings and fears made them vulnerable. some of them found this space in close friends, but not family members, because they wanted to protect their families. for example, a participant who was diagnosed at stage ii disclosed that: there is only a handful of people i feel i can entirely open up to and tell how scared i am. it’s years of being with them; they are good friends. you show your vulnerability a little bit because you don’t feel that you’re going to be judged. another participant with a stage iii diagnosis also said she talked more to her close friend who also had cancer because “she’s gone through it and she’s going through it again so she knows what it is like; unlike someone who knows someone who has cancer, they [i.e., people who have not personally experienced cancer] are more judgemental.” relatedly, a participant who had terminal disease acknowledged that communicating openly about her [qualitative research in medicine & healthcare 2021; 5:9376] [page 77] article no nco mm er cia l u se on ly death was crucial in helping her family know and honor her wishes; however, her impending death was a difficult subject for her parents: we’re pretty open; we talk about everything. we talk about the pain, the funeral and everything. everybody knows what i want, which is good. it is hard, too. my parents don’t want to talk about some of it which is understandable; i’m their only child and they are in their 80s; it’s really tough on them. as these examples reveal, it was not a single issue (e.g., audience or family communication pattern) that motivated participants to be open about their experiences; instead, they considered multiple issues together to decide how much to disclose about specific aspects of their cancer experiences. topic avoidance several participants explained their decision not to discuss certain aspects of their cancer experiences with young children or elderly and/or sick parents. in addition to that, participants who were uncertain about their prognosis because of recurrences or late diagnosis (i.e., stages iii or iv) tended to avoid disclosure of their feelings concerning the issue; some also limited disclosure the more the disease recurred. reasons participants gave for avoiding communication are discussed below. protecting loved ones in order not to further distress loved ones, especially children, 10 participants said they withheld some details about their cancer experiences. as noted above, one woman wanted to protect her children and thus did not divulge every detail about how she felt to them: i don’t say too much in front of my children that “i’m scared” or “i’m going to die from this disease,” or “it is going to get me.” i don’t say those things to them because i don’t want much sadness in their world as much as possible. as a mother, you’re protecting till you’re gone. but i know i am not fooling them; i know that. uncertainty about progression of disease and what that meant for her life and her children contributed to this participant’s reluctance to fully disclose her feelings to her children. she was diagnosed at stage ii, had three recurrences, and considered herself “stage iv now because it [cancer] has metastasized to my liver.” she added, “i can see the frustration [in her children] each time the disease is back. my son keeps saying ‘you fight, mom; you keep fighting’ and my daughter also wants me to fight.” she said her daughter was not yet married, so she had been “bargaining” with god to “please make sure that my daughter meets somebody special before i die because i’m so afraid that she will be by herself when i’m not around. that’s my biggest fear.” this quote suggests that uncertainty about how the disease was developing, concern about the devastation it would cause her children to know her fears, and fear about how life would be for her children when she died all contributed to this woman’s decision to protect her children by not disclosing information that would distress them. another participant also explained the reason for not disclosing everything about her experience to her children as follows: i didn’t tell them everything in-between because i wanted them to be sophomores and juniors and not worry about their mom dying or anything. i don’t regret it because i would not have ever wanted them to not do something with their friends or stay home because they felt sorry for me. this participant admitted that because she did not fully disclose her illness experience to her children, she had missed opportunities to receive support from them. it was later, when she participated in an ovarian cancer awareness walk with her family, that her children got a glimpse into her experience. she recalled, “all four of the kids said ‘we have no idea; you came home and said ‘i have cancer and i’m going to have surgery’ and later you said ‘i’m better.’” although this woman did not explicitly state this as a reason for not telling her children every detail about her cancer experience, uncertainty about nature of the disease may have contributed to issues she avoided talking about with her children. her ovarian cancer cell was rare (i.e., juvenile granulosa cell tumor), and there were many things about the disease neither she nor the doctors could control or predict. for instance, she said: “i’ve had four different masses pop up on my abdomen and my pelvic side-wall, but they all came back benign,” and: my numbers [for inhibin a and b, a type of ovarian cancer tumor marker] went up to 42, but there was nothing that showed on the pet [positron emission tomography] scan, and they [doctors] said my cell is known for micro-tumors, so they lay dormant, and you can’t find them. so i’m just at a point where i have to wait until the cells get big enough where they can find it. because of these issues, she said she “just never let them [children] in that far” on her experience. similar to these examples, another woman also avoided discussing details about her illness to protect her parents. however, following a conversation with her mother, she realized that keeping information away from her parents was creating more uncertainty and anxiety for them and, thus, began to be more open with them: [page 78] [qualitative research in medicine & healthcare 2021; 5:9376] article no nco mm er cia l u se on ly at first, i wouldn’t tell my parents a whole lot about what was going on because i know how bad it hurts them; i felt bad that i was the one who was ill so i kind of tried to protect them. and i remember one day just sitting around and talking with my mom, and i was saying “well, if there’s any saving grace to this, it is me that has cancer and not one of my girls” and she looked at me and said, “how do you think that i feel?” it was at that moment that i realized that it didn’t matter if i was a woman in my 40s; i was still their daughter. so i started letting them in more. i started telling what the doctor said, the good and the bad, because i realized that by shutting them out i wasn’t helping them. this example points to open communication as a process that sometimes begins with avoidance. avoiding certain details about her experience gave this participant the chance to gauge her own feelings and anticipate how her parents would react; she later opened up when she was sure the topic was something her parents wanted to know. deeming disclosure unbeneficial similarly, when participants determined that communicating about their experiences would not be beneficial to the people they were communicating with, they chose not to disclose. for example, one woman said she did not disclose her diagnosis to her mother who had lewy body disease, was in a nursing home, and was still grieving the loss of her brother. she did not want to further burden her mother who was already emotionally distraught: i never told my mother that i had cancer because she was still grieving the loss of my brother. i explained to her that i was going to do d&c [dilation and curettage]. until the day she died, i never told her i had cancer; i just did not see any point in giving her that. another participant also stated she did not tell her mother about her stage iii diagnosis because her mother was not in a position to understand. she explained, “my mom has alzheimer’s disease, so she still does not comprehend cancer.” both women determined that disclosing their diagnosis would not yield the needed support from their mothers and would also not benefit the mothers who were not in a position to mentally process the news. at first glance, it may appear the health conditions of their mothers were the reason these participants did not disclose their diagnosis, but a deeper look at their cases showed that the cancer diagnosis did not fit into the worldviews of both women, leading to uncertainty. uncertainty in illness can arise due to inability to integrate new information into existing worldviews and belief systems, according to existing research.17 for instance, the first woman explained issues going on in her family at the time she was diagnosed, including death of her brother from bladder cancer and her mother’s diagnosis with lewy body disease, and how doctors initially did not think her symptoms indicated ovarian cancer: “it was quick how i was diagnosed. i found that it was ovarian cancer and then it was gone [i.e., had surgery to remove tumor]; so it wasn’t like i had any time to even think about it.” she had surgery, but not chemotherapy, and was back to her regular schedule one week after her surgery. similarly, the second woman described her life as “very full” from taking care of her mother, working part-time in the evenings, and volunteering for several organizations, adding that “i’m too busy to sit and worry about how i am going to cope.” thus, she had challenges integrating this new information (i.e., a cancer diagnosis) into her plans and schedule. another participant who was diagnosed during her teen years said she did not disclose her anger and frustrations to anyone because that was something she needed to figure out on her own. she described that period in her cancer experience as a “reflective stage” and “a big critical thinking point for me.” she explained that although she was very close to her mother and talked to her to process her diagnosis and treatments, she still “internalized a lot of [her anger]. i tried to get emotions out by doing physical activities and things that made me feel like i used to be.” making personal sense of cancer uncertainty about cancer prognosis led 12 participants to withhold information about their experiences until they could manage some of that uncertainty on their own. for example, one woman likened her cancer diagnosis and treatments to an unfamiliar experience which she needed to understand on her own before she could express to others. she said she did not want to talk to people when she was initially diagnosed at stage iii “because you’re just crawling up a hole and when you’re out of that hole, then maybe you can communicate with some people.” this participant eventually started letting people back into her life when her treatments were over and recently went to lunch with a friend she had refused to see when she was in treatment: “when i received news of my diagnosis, until i was done with treatments, i became a hermit and very quiet... i changed into a totally different person.” similarly, another participant who was living with recurrent ovarian cancer and had to take medical retirement due to complications from treatments said that before she returned to work after her primary treatment, she “sent a letter to my [work] colleagues letting them know that i would answer any question about ovarian cancer they needed to know; i just don’t want questions about prognosis because i don’t know what my prognosis was.” she said setting those “boundaries” was necessary to foster conversation about her experience by focusing on topics she felt comfortable talking about. another woman who [qualitative research in medicine & healthcare 2021; 5:9376] [page 79] article no nco mm er cia l u se on ly was also living with recurrent disease said she refrained from talking about her experience publicly the more the cancer recurred: “the more the cancer comes back, the more i become a little inward because there is a feeling that ‘it has got me; it is going to take my life eventually.’” further, ta by participants was impacted when family members avoided communicating about issues pertaining to participants’ cancer experiences because of their own uncertainties about the disease. for example, one participant mentioned how uncertainty about outcome of treatments made her mother unwilling to communicate. her mother later opened up when she felt positive about treatments: she at first put like a wall up; she wouldn’t come to the hospital when i had my surgeries because she didn’t want to deal with it. but about a year later, you kind of saw this wall come down to where she would ask if she could go to my doctor’s appointments with me. this participant explained that her mother’s unwillingness to discuss her cancer experience caused her [participant] to also not broach the topic. she explained how she used her experience to encourage co-workers, friends, and family members to pay attention to their bodies and report any changes to their physicians, but did not have that conversation with her mother because “it was kind of making her [mother] mad.” similarly, as stated earlier, the participant with terminal disease communicated openly to most people about her impending death, but not with her father who had difficulties talking about the topic: because i’m the only child and we’ve been very, very close, he has a very hard time dealing with my situation. so it’s easier for him to get up and go to the other room or go outside and do something than to sit down and talk to me because he can’t deal with my death, which makes sense. my mom is a little bit better, but she is on anti-depressants. but at least we can talk about it. this participant mentioned that when she was initially diagnosed, “i was pretty optimistic that they [doctors] could get it and i would be better again” and that even though her family was “devastated and scared” by the diagnosis, they “were pretty optimistic too.” however, they lost hope “after the first chemotherapy failed and the cancer started to grow again within 30 days after i stopped treatment” and subsequent treatments were also not effective. thus, the changing trajectory of this woman’s illness impacted her pattern of communication about her experience with her family—from being hopeful about treatments to accepting that treatments were not working and then talking about her impending death. these examples suggest that participants’ enactments of openness and ta about their experiences changed relative to the changing illness trajectory: while some of them would not discuss death openly as the disease progressed and others were avoidant when initially diagnosed but began to open up once treatments were over, the participant with terminal disease talked openly about death when she knew her cancer was terminal and treatments were no longer effective. discussion and implications the present study examined openness and ta in interpersonal communication about ovarian cancer in an attempt to address a gap in research on the topic. the findings shed light on how ovarian cancer patients/survivors enacted openness and ta about their experiences and how ta helped them manage uncertainty about the disease. uncertainty about disease prognosis and effectiveness of treatments prompted ovarian cancer patients/survivors to avoid discussing certain topics. consistent with uncertainty management theory, uncertainty appraised as a threat/danger is managed by information avoidance — including avoiding specific topics, situations, or selectively attending to information11 — findings from this study showed that patients/survivors appraised uncertainties surrounding ovarian cancer diagnosis and treatments as threats and consequently managed these by avoiding topics that promoted these uncertainties. participants mainly avoided disclosing details about how they felt during treatments and their fears about recurrence and death to children and elderly parents — individuals with whom they had protective relationships. this finding shows influences of the mothering role on communication about ovarian cancer. many participants desired to openly communicate their feelings; however, they also wanted to protect loved ones similar to the sense of responsibility mothers feel toward their children, and when these goals conflicted, they chose to protect their loved ones by disclosing just enough, but not everything. this is consistent with past research suggesting that negotiating roles as mothers and cancer survivors/patients can be challenging for some women43 and that some cancer patients do not disclose their diagnosis to young children and elderly parents in an effort to protect them.44,45 further, the findings suggest that communication about ovarian cancer is layered with degrees of openness and avoidance. it was not an either-or situation, where women were either open or avoidant when communicating about their cancer experiences. rather, with the same topic, they could be open and avoidant at the same time, depending on the audience, or they could be open at one time and avoidant later and vice versa. for example, whereas women were honest about their feelings (e.g., fear of death or recurrence) with their spouses, they refrained from sharing these feelings with their children. also, some women avoided certain topics, including prognosis and the possibility of death, during early stages of [page 80] [qualitative research in medicine & healthcare 2021; 5:9376] article no nco mm er cia l u se on ly the cancer experience, but became more open about such topics later on as treatments progressed successfully. on the other hand, those who were very open at diagnosis tended to avoid such topics the more the disease recurred. these findings show openness in ovarian cancer communication as a process that may begin with ta and ta as sometimes being influenced by uncertainty about disease progression. openness is also determined by a combination of factors, including audience and family communication patterns. consistent with past research,34,46 participants considered not only their own emotions, but also how loved ones would react when deciding how much to disclose about their cancer experiences. these findings are also similar to previous research suggesting that open communication in the cancer context varies by topic, by individual, and over time29 and that openness is best conceptualized in terms of variability instead of whether or not cancer patients or relational others are open.28 the present study extends past studies by adding the perspectives of ovarian cancer patients/survivors and how uncertainty about the disease impacts enactments of openness and ta. however, contrary to past research suggesting that ta about death increases as prognosis worsens,25,34 findings from this study demonstrate that that is not always the case. whereas some participants avoided openly talking about death as the disease progressed, the participant with terminal disease communicated openly about her death with her family. the findings provide support for umt19 by suggesting that as the illness trajectory and levels of uncertainty changed, disclosure patterns also changed. ovarian cancer is shrouded in uncertainty, and uncertainty management is integral to the illness experience. how women respond to continually changing physical, social, and financial realities of the disease manifests in how they communicate about the disease, including what information — and how much information — is disclosed. this indicates that communication about the disease and uncertainty management strategies are interconnected. this fluidity of communication about ovarian cancer relative to changing illness trajectory supports past research results which showed that as uncertainties and fears change along the cancer trajectory, ensuing levels of communication also change.29 the finding about communication challenges between the participant with terminal cancer and her father reflects past studies that relational others are sometimes uncomfortable listening to patients’ open communication about cancer-related topics such as death.28 venetis et al.27 observed that greater patient openness could lead to greater partner burden (i.e., negative feelings and guilt). given that death is the most difficult topic to discuss in the cancer context,29 intervention efforts should focus on helping cancer patients/survivors and relational others practice sensitivity when discussing death and dying. these findings have important theoretical and practical implications. goldsmith and colleagues26 explain openness and avoidance as facilitating fundamental communication processes such as privacy regulation, uncertainty management, and information seeking and provision; building on that theoretical position, the present study analyzed how openness and ta informed uncertainty management strategies for ovarian cancer patients/survivors. also, by examining how openness and ta served uncertainty management purposes for ovarian cancer patients/survivors, this study provides support for a tenet of the umt that information/communication avoidance is a strategy for managing uncertainty.11 findings from this study point to complexity of interpersonal communication about the uncertain progression of ovarian cancer. thus, more research on the nature of interpersonal communication about the disease can help generate theory-driven resources to educate affected individuals and families on ways to effectively communicate at different stages of the illness. similarly, practitioners should incorporate discussions about the interpersonal aspect of the disease, including nuances of openness and ta and how these constructs are related to uncertainty management during counseling sessions and at follow-up visits. this will encourage ovarian cancer patients/survivors and relational others to recognize the importance of these issues to the experience of the disease. limitations a limitation of this study is the absence of perspectives of relational others. future studies could include the views of spouses, parents, children, and co-workers to help better understand how openness and ta are interpreted, negotiated as well confronted and controlled in communication relationships with different audiences. another limitation is that openness and ta were not the primary focus of the interviews; thus, specific details about the topic may have been missed. additionally, the study population comprised mainly of married, caucasian, christian, and heterosexual women. this is a limitation because these social identities placed participants in a privileged position, which was reflected in how they made sense of and communicated about their experiences; therefore, the stories presented in this study may not accurately represent the experiences of ovarian cancer patients/survivors from marginalized backgrounds, including racial, sexual, and religious minorities. other limitations include a relatively small study population, self-reported and cross-sectional (not longitudinal) data, and interview transcripts not validated by the second author. these limitations notwithstanding, this study provides significant insights into uncertainty management and interpersonal communication about ovarian cancer. 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[qualitative research in medicine & healthcare 2021; 5:9376] [page 83] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2019; 3:7826] [page 47] introduction the norwegian welfare state is based on the principle of universalism, which implies that all health and welfare services should be provided equitably to all citizens, regardless of age, gender, ethnicity, financial status, social status, and place of residency.1 statutory services, such as home-based care and long-term care, are regulated through national juridical acts and public block-grant funding; however, a high degree of local autonomy exists with regard to the accommodation of services to local conditions,2 a principle termed local universalism or decentralized universalism.3,4 norwegian governmental health care policy documents conceptualize predictability, familiarity, and continuity as key aspects of high-quality health care services.5 norway is a country with a relatively small population of 5.2 million,6 of which approximately 20% resides in rural areas.7 there is a clear tendency of people moving from rural to more urban areas, particularly among younger people.8 consequently, the average age of the population in rural areas is relatively high. moreover, the overall norwegian population is aging, with one in nine norwegians currently aged 70 years or over, and this percentage is set to increase.6 the number of people with dementia in norway has been estimated at 77,000, a percentage of the population fairly similar to the eu average of 1.55%.9 similar to other comparable countries, norwegian health care authorities have conceptualized aging in place as an attainable and required goal for older adults and individuals with dementia.10,11 simultaneously, the number of assisted living facilities (alfs) in norwegian municipalities has increased.12 in this article, we explore the experiences and practices of care in the landscape of assisted living facilities for older people and people with dementia in rural areas from the perspectives of family members, health care professionals, and representatives of senior citizen interest groups. specifically, we focus on the potential of alfs in assisted living in rural areas: aging in blurred landscapes bodil h. blix, torunn hamran centre for care research north, department of health and care sciences, faculty of health sciences, uit the arctic university of norway, tromsø, norway abstract here, we explore the experiences and practices of care in the context of assisted living facilities (alfs) in rural areas from the perspectives of family members, health care professionals, and senior citizen interest group representatives. specifically, we focus on the potential for alfs to safeguard and unify the health care policy ambitions of equity, quality, and aging in place. focus group interviews with health care professionals and interest group representatives and individual interviews with family members were conducted in largely rural norwegian municipalities. providing high-quality health care services in people’s homes remains challenging, particularly in rural areas. alfs have been introduced as a compromise, a home away from home. in rural areas, alfs are typically localized in community centers. alfs are neither homes nor nursing homes, and residents possess varying and changing care needs. several parties experience challenges with respect to safety, evolving care needs, and responsibilities. moreover, the service allocation and user payment systems may undermine equity. this study indicates that health care authorities should evaluate whether prioritizing assisted living is still suitable for the aging population in rural areas and beyond. correspondence: bodil h. blix, centre for care research north, department of health and care sciences, faculty of health sciences, uit the arctic university of norway, tromsø, n9037 norway. tel.: +47.77660682. e-mail: bodil.hansen.blix@uit.no acknowledgements: the authors are grateful for the editor’s and the anonymous reviewers’ constructive and clarifying comments on an earlier draft of this manuscript. key words: assisted living; rural health care services; aging in place; older adults; dementia. contributions: the authors contributed equally. conflict of interest: the authors declare no potential conflict of interest. funding: this work was supported by the research council of norway, grant number 238146. received for publication: 13 september 2018. revision received: 23 march 2019. accepted for publication: 2 april 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:47-57 doi:10.4081/qrmh.2019.7826 qualitative research in medicine & healthcare 2019; volume 3:47-57 no nco mm er cia l u se on ly safeguarding and unifying the three health care policy ambitions of equity, quality, and aging in place. landscapes of care, aging in place and assisted living health geographers have introduced the concept landscapes of careas a framework for unpacking the complex relationships between people, places and care.13 milligan and wiles have suggested that experiences and practices of care are shaped by the interplay among socioeconomic, structural, and temporal processes. moreover, they have noted the necessity of understanding the macrolevel governance and social arrangements, policies and place characteristics that operate at both national (and international) as well as interpersonal levels.13 this study demonstrates how experiences and practices of care in rural assisted living facilities are shaped, challenged, and negotiated within the frames of policies, ideals, geography, physical structures, and interpersonal relations. already in 1994, the health and social policy ministers of the organisation for economic co-operation and development (oecd) started to promote the concept of aging in place.14 some definitions of aging in place stress the ability to live in one’s own home,15 whereas other definitions emphasize the possibility of continuing to live in one’s community.16 in norwegian health care policy documents, aging in place is explicitly associated with a person’s home: it is a goal to provide everybody the opportunity to live at home for as long as possible and to receive individually tailored services in their own homes [authors’ translation].11 the ideal of aging in place presupposes access to appropriate informal care and high-quality home-based health care services in people’s homes.17 however, large geographical distances and insufficient staff competence pose challenges to the provision of sufficient high-quality home-based health care services, particularly in rural areas.18,19 moreover, sociodemographic changes and mobility have reduced the possibility of informal care from family caregivers in people’s homes.17,20 there is a growing awareness that an increasing number of older adults, including some with dementia, have extensive and complex needs that are incompatible with continuing to live in their own homes.21 when those in need of care can no longer manage at home or when sufficient health care services can no longer be provided at home, people must move. thus, aging in place has been reinterpreted,22 and assisted living has been promoted as a home away from home,21 a middle ground between homes and nursing homes,23 and a homelike environment that fosters respect for an individual’s sense of autonomy, privacy, and freedom of choice.24 just as the ideal of aging in place has gained ground in norwegian health care policies, the number of people receiving health care services in their homes and in shortterm institutions increased between 2009 and 2015, whereas the number of people in long-term care institutions decreased.25 simultaneously, the number of alfs in norwegian municipalities has increased, and the number of local nursing homes in remote communities has decreased.12 in norway, 11% of individuals over 80 years old reside in alfs.26 public statistics consider alf residents to be registered as home dwelling.27 although assisted living is growing rapidly, it lacks a common definition; therefore, differences with regard to ownership, auspices, size, and philosophy have been documented.28 norwegian health care authorities have acknowledged the lack of a common legal definition of alfs, stating that [m]unicipalities are not obligated to offer assisted living facilities to persons in need of health and care services, and no legal definition of assisted living facilities exist [authors’ translation].29 in other policy documents the line between alfs and nursing homes is described as blurred: on the one hand, nursing homes are starting to resemble housing, while, on the other hand, current assisted living facilities are built in connection [to each other] and used as a supplement and an alternative to nursing homes [p. 42; authors’ translation].10 in fact, in norway, the most distinctive difference between nursing homes and alfs lies in the legal regulation of alfs as independent housing.26,29 the majority of alfs are served by home care services,27 specified in contracts and paid for by the residents in the same manner as for ordinary home care services.29a more limited number of alfs are staffed on a 24-hour basis.29,30 purpose and research questions in this article, we explore the experiences and practices of care in the landscape of assisted living facilities for older people and people with dementia in rural areas from the perspectives of family members, health care professionals, and representatives of senior citizen interest groups. the following research questions guided the analysis: from the perspective of older adults, family members and health care professionals, are alfs adequate means for achieving the health care ambition of aging in place for people in rural areas? more specifically, are alfs considered as people’s homes? are alfs in rural areas consistent with the ideal of equity? are alfs in rural areas in line with the ideal of quality conceptualized as predictability, familiarity, and continuity? materials and methods study design to explore the expectations and experiences of health care professionals, family members and senior citizens, a qualitative research design combining focus group interviews and individual interviews was chosen.31 focus group interviews were conducted with health care professionals and representatives of senior citizen interest groups (henceforth, senior representatives), and individual [page 48] [qualitative research in medicine & healthcare 2019; 3:7826] article no nco mm er cia l u se on ly interviews were conducted with family members of individuals with dementia not living in nursing homes in northern norway. our understanding of a focus group interview is consistent with barbour, who noted that any group discussion may be called a focus group as long as the researcher is actively encouraging of, and attentive to, the group interaction […] ensuring that participants talk amongst themselves rather than interacting only with the researcher (p. 2).32 our purpose was to elicit a multiplicity of views and experiences; hence, focus group interviews represent a particularly suitable research approach. considering the personal and potentially emotional nature of topics related to being a family member of a person with dementia and to safeguard the anonymity of people with dementia, we chose to conduct individual interviews with family members rather than focus group interviews. ethics this study was approved by the norwegian center for research data. all participants provided informed consent to participate. the participants were informed of their right to withdraw from the study without stating a reason, and they were assured that confidentiality would be maintained. at the beginning of the interviews, the interviewer described the purpose of the interview and assured the participants of their anonymity. participants and recruitment the study was conducted in areas with largely rural populations, i.e., municipalities with populations ranging from 900 to 3000 residing in municipality centers and several surrounding remote communities. five focus group interviews were conducted with health care professionals (n=23) in five municipalities. the single inclusion criterion for the focus group interviews was that the participants were involved in providing everyday care for users of local health care services, including the provision of care for residents in alfs, which means that the participants were either registered nurses or licensed practical nurses. their work experience ranged from seven to forty years in the public health care service sector, and all participants were women. the managers of local care services distributed informational material and consent forms to potential participants. signed consent forms were returned directly to us in prepaid envelopes. consequently, local managers had no information regarding who chose to participate in the study. after receiving letters of consent, we scheduled focus group interviews in the respective communities. the focus groups varied in size and composition, with the smallest group consisting of only two participants and the largest group comprising eight participants. one focus group interview was conducted with senior representatives from one municipality (n=5). to recruit participants, we contacted an individual known to possess extensive knowledge of local interest groups.33 this person was asked to distribute informational material and consent forms to seniors involved in the most significant senior citizen interest groups in the community from different geographical areas in the municipality using a purposeful sampling strategy. senior citizen interest group representatives who consented to participate in the study returned signed consent forms directly to us in prepaid envelopes. after receiving signed letters of consent, we scheduled the focus group interview. the focus group for the senior citizen interest group representatives consisted of individuals involved in the local dementia association (n=2), the senior association (n=2), or independently (n=1). individual interviews were conducted with family members (n=11) of persons with dementia not living in nursing homes in five municipalities. the participants were recruited from those who participated in a survey study of family caregivers for people with dementia.34 in the survey, the participants indicated whether they were willing to participate in a qualitative interview. written informational material and consent forms were sent to people in five municipalities. when signed consent forms were returned to us, we contacted the participants to schedule interviews. the family members included spouses (n=4), sons (n=2), daughters (n=4), and grandchildren (n=1). focus group interviews the focus group interviews with health care professionals were conducted in meeting rooms at local nursing homes or health care centers while the focus group interviews with senior representatives was conducted at a local hotel. a broad topic guide was used in the focus group interviews. the topic guide for health care professionals included the following topics: district descriptions, service user descriptions (e.g., geographic distribution, age span, and networks), the establishment of contact between service users and health care services, experiences of offered services being rejected, experiences of requested services being unavailable, collaboration with families and other informal caregivers, and the distribution of responsibilities between informal caregivers and health care services. the topic guide for the senior citizen interest group representatives included the following topics: descriptions of the senior associations and their members, the representation from different geographical areas and social groups in the municipality, their collaboration with the municipality administration and public health care services, and their involvement in the decision making, planning, and design of health care services. all focus group interviews were digitally recorded, and both authors were present; one was responsible for asking questions and initiating group discussions while the other focused on observing and taking notes regarding [qualitative research in medicine & healthcare 2019; 3:7826] [page 49] article no nco mm er cia l u se on ly group interactions and identifying new leads as they appeared in conversations. immediately after each focus group interview, we discussed the interviews and wrote field notes; then, the interviews were transcribed. individual interviews based on a broad topic guide, the participants were invited to speak freely about the person with dementia, their own situations as family members, their involvement in care provision, their contact and collaboration with public health care services, and their thoughts on the future. the interviews were conducted in the participants’ homes or workplaces. all interviews were digitally recorded and transcribed, and the first author (bhb) conducted all individual interviews. thematic analysis this study was part of a research project investigating the use and nonuse of community health care services among home-dwelling older adults and family caregivers. hence, a wide range of issues were covered in the topic guides for the focus group interviews and individual interviews, and a variety of health care services and living arrangements in addition to assisted living facilities were addressed in the total data corpus. the data set for this study was identified by our particular interest in alfs, and it comprised the instances in the corpus where issues related to alfs were discussed.35alfs were discussed in all focus group interviews and in five of the individual interviews (the family members of the six remaining interviewees lived in their own homes). hence, the data set was extracted from six focus group interviews (one with senior representatives and five with health care professionals) and five individual interviews. a thematic analysis, described by braun and clarke as driven by the researcher’s theoretical or analytic interest in the area, represented a suitable approach because it tends to provide a detailed analysis of some aspect of the data (p. 84).35 the audio recordings were replayed, and the transcribed texts were reread several times. we examined each interview individually using a process that involved a purposeful search for and coding of segments related to alfs. the search for patterns and contradictions in the data set was a recursive back-and-forth movement between the data set and the coded segments. in the next phase, the codes were collated into potential themes and subthemes. then, the themes were revised and named. this process resulted in the following main themes: capacity and geography; blurred landscapes; and local and everyday adjustments. the main theme blurred landscapes included the sub themes home-like but not home; blurred lines between alfs and nursing homes; the complex nature of responsibilities in alf landscapes; and uncertainties concerning evolving care needs in alf landscapes. results capacity and geography the health care professionals and senior representatives presented alfs as a pragmatic solution to the mismatch between people’s care needs and the extent of services that is possible to provide in people’s homes. this mismatch was partially presented as a result of the increasing need for care of people with dementia, as stated by one senior representative: the home care services have become more developed. and most people wish to stay in their own homes for as long as possible. but with regard to people with dementia, it is necessary. eventually. they can’t stay at home. they don’t manage. however, this mismatch was more often presented as a result of large geographical distances and the capacity issues in home care services, as outlined in the following statement from a health care professional: if people live in [name of local community] and need much help…50 or 60 kilometers away… we have to say that we cannot manage. the capacity is too low. then, we have to find other solutions. so, those who live far away get an apartment here in the [municipality] center. an assisted living facility. in other words, the primary driver for moving to alfs was not necessarily the service users’ comprehensive care needs. rather, large geographical distances and economic curtailments were presented as the driving forces. hence, people in the remote areas of municipalities were particularly affected, as demonstrated in the following description from one of the focus group interviews with health care professionals: about ten years ago, it was decided that services in the evenings and at night should only be provided in the area around [the municipality center]. still, the economy allowed us to provide some services in remote areas. but not anymore. […] we’ll have to encourage people to apply for assisted living facilities in this area. […] the assisted living facilities around here… there are perhaps 40 people living there. most of them are from rural areas. […] they could have stayed at home if we could drive there. the final statement indicates that aging in place is particularly challenging in remote areas, leaving service users with extensive care needs in such areas no other choice but to move into alfs in the municipality center. this point was also suggested by the senior representatives: there has been a tendency that at least those who don’t live close to the [municipality] center are strongly encouraged to move into a living facility here. because the nurses have other things to do besides driving around the municipality. that’s my impression. if you live quite close and are not in need of much care, then… but if you are in need of care, the tolerance for letting you live at home is low. [page 50] [qualitative research in medicine & healthcare 2019; 3:7826] article no nco mm er cia l u se on ly the service users’ needs for care and capacity/geographical issues were not ascribed an equal value as reasons for moving into an alf. as a pragmatic solution to the imbalance between the services needed and the services capable of being provided, alfs were presented as more legitimate when the mismatch could be ascribed to the service users’ needs rather than aspects of the health care services or the geographical context. this point was demonstrated in the following statement from one of the focus group interviews with health care professionals: it’s sad when you have to move to the [municipality] center because your home is too far away. [… ] it’s completely different if you have to move because you need more help. but if the only reason is… if you could have continued to stay at home if you lived closer to the center… if you have to move because of that… notably, neither geographical distances nor capacity issues were discussed by any of the family members interviewed in this study. blurred landscapes home-like but not home in norwegian health care policies, alfs are defined as people’s homes. nonetheless, the family members expressed unease with defining an alf as a home: even though the assisted living facilities are defined as a home… it’s not what i think of as a home. that’s the place where you lived and grew up. home… for my father, home is the house he built… our home. that. but, of course, this is… this is his home now. […] but that’s home. but… well… i have thought… but, of course, this is his home. this daughter demonstrates that home is a word that carries several connotations. the home is simultaneously a physical structure (a house), a personal idea, and a place of one’s affection.22 for her, the alf does not convey all three meanings of the word home. a home is closely associated with a local community (the place where you lived and grew up). for people in remote areas of the municipalities, moving into an alf in the municipality center involves moving away from their local communities. efforts are made to make alfs home-like and to appear as homes rather than as institutions. typically, alf buildings are smaller, with private rooms or apartments and common spaces for residents. nonetheless, alfs did not necessarily appear as homes to some residents. one family member noted the following: the rooms are nice. they have a small kitchen. the intention was that they should cook for themselves. coffee and stuff like that. but it didn’t happen. ‘cause she didn’t… well, she soon became very… probably, she felt that she should be served when she is in an institution. you can’t do things yourself there because it’s not yours. this daughter associated her mother’s passivity with a lack of feeling ownership of her apartment (it’s not hers) and the feeling of living in an institution. additional examples of family members experiencing that the alf environment restricted their leeway were observed, as expressed by one spouse: i’ve been there a few times, playing my accordion. and it has been… well, it was a success. but… i’m also… on the other hand, i’m afraid to… force myself on… i’m a little careful about that. […] i’m a little careful about walking in on the arenas of others. […] well… there is a common space… that’s not mine. there are several… several… in that common space. and… i don’t know… i don’t want to seem like i’m dominating in any way. this husband was acutely aware that the alf was his wife’s home. nonetheless, he felt that the alf was somebody else’s arena, and hence, not a place where he could entertain his wife with his accordion. blurred lines between assisted living facilities and nursing homes the family members, health care professionals, and senior representatives all mentioned the mismatch between the intentions and the realities of alfs. alfs appeared to be designed for a group of residents different from those who currently lived there. they were intended for healthy people, but the residents had comprehensive needs for care. to meet residents’ extensive care needs, alfs have ended up resembling nursing homes. the status of alfs then became more of a matter of definition (on paper), as stated by one granddaughter: it’s an assisted living facility. to live there, you should be quite self-reliant. but it’s more like a nursing home, even if it’s not on paper. the gradual evolution from alfs to nursing homes as a consequence of the residents’ comprehensive care needs and the lack of other alternatives was also articulated by the health care professionals: [alfs] were never intended for people in need of care. […when the alf] opened in [the 1990s], the residents were quite healthy and managed to cook for themselves and so on. take a shower. but gradually they needed more care. some of them were sent to [the nursing home], but it doesn’t work like that because [the nursing home is full]. so, the alf is more like a nursing home now. but the building is not designed for that. both the health care professionals and senior representatives suggested that alfs are inappropriate for people with dementia. the senior representatives were particularly concerned regarding the safety of residents with dementia: people have disappeared from the alf and almost frozen to death in winter. in the neighboring municipality, people have gone outside and frozen to death at least twice. [qualitative research in medicine & healthcare 2019; 3:7826] [page 51] article no nco mm er cia l u se on ly similar concerns were also raised by the health care professionals. one senior representative also questioned the competence of alf staff with regard to people with dementia: there should be health care professionals for the people with dementia. fine, they come there as residents. they need food and care. but they also need health care professionals who know how to handle people with severe dementia. it’s something more than forgetting which day it is or the names of visitors. having health care professionals who know how to make life easier for people with dementia, not only how to provide daily care, is a matter of quality of life. the health care professionals acknowledged that alfs were not optimal for people with dementia but, rather, were used as a consequence of a lack of alternatives: it’s obvious. there are too few placements for people with dementia compared to the need. it’s a dementia unit here. it’s full. and those who cannot stay there or at the nursing home come here, to the assisted living facilities. it’s an open environment where lots of people come and go. and the people with dementia sit there, perhaps pulling down their pants or urinating in a corner. it’s terrible for the person with dementia. but also for the others sitting around watching. the complex nature of responsibilities in assisted living facilities landscapes the ambiguous position of alfs in the continuum between homes and nursing homes may affect family members’ and health care professionals’ perceptions of responsibility, as demonstrated in the following description from a focus group interview with health care professionals: i’ve heard several times from relatives that… for example, a daughter who says that we in the home care services are responsible for the person. that’s troubling. […] particularly in alfs. it’s their homes. in this context, the health care professionals could experience situations in which the residents’ families ascribed responsibilities to them reaching far beyond their formal duties: some relatives expect us to take responsibility for far more than we are supposed to. for example, if the person is going to the hospital. arranging the travel and being an escort. many [relatives] believe that we fix it. and we used to do that, previously. but we have been told that it’s not our responsibility. we are not supposed to do it. but we still do it, for some [residents], because they have no resources and no relatives. however, the health care professionals’ responsibilities could also be self-ascribed: yes, it is our [responsibility] because they are incapable of taking care of themselves. that’s it. they are completely in need of care. they need help from us for care, or they can perhaps help with some guidance. but they are incapable of living on their own, which was the intention for such apartments in the first place. this health care professional was acutely aware that the status of alfs as homes had implications for the autonomy of residents and, consequently, the responsibilities of health care professionals. nonetheless, this awareness was overruled by the fact that the residents were completely in need of care and incapable of living on their own. for the family members, responsibilities could appear complex and confusing, as expressed by one daughter: i simply don’t know who her contact person is. i know nothing about that. […] i don’t know who to consult. there are lots of nurses. i don’t know who is who. who works in home care services and who [works at the nursing home]. my mother belongs to the home care services. so, i confuse them with those working at… i tend to believe that everybody in that office works there. but, obviously, they don’t. when i give messages, i’m not sure if they get them. i have asked several times about her medication. i realize that the licensed practical nurses who work there do not know. in this municipality, the alfs and the nursing home were localized in the same building but were served with separate staff. the alfs were served by home care services, whereas the nursing home had separate staff. for this daughter, the complex and confusing organization and division of responsibilities (i don’t know who is who) compromised her opportunities for involvement in decisions regarding her mother (i don’t know who to consult). concerns regarding the staffing of alfs were also raised by the senior representatives. however, rather than ambiguous responsibilities, their concerns regarded the potential negative impacts of a changing and mobile staff for people with dementia: the staff rotates continuously. we tried to tell [the managers] that if you read about people with dementia, you learn that what they need is stability – the same people to relate to. but the leaders believed that their staff needed to rotate in order to be familiar with [all the different units in the care services]. those who work in the alf belong to the home care services, so they can’t only be in the alf. uncertainties concerning evolving care needs in assisted living facilities landscapes for some family members, the transitions between levels of care appeared to be predictable and logical, as demonstrated in this son’s response to the interviewer’s queries regarding his father’s opportunities for continued residency in the alf in the face of increased care needs: [page 52] [qualitative research in medicine & healthcare 2019; 3:7826] article no nco mm er cia l u se on ly i guess so. but i believe they perceive the nursing home as an alternative if the person is… reaching a certain need for care. that’s next door. so, they can simply put him on a stretcher and roll him along the asphalt, and then, he is in another place. that’s my impression – without taking it for granted. my impression is that’s how things work. eventually, they end up in the nursing home if they need a certain amount of care. however, several family members expressed uncertainty with respect to the futures of individual residents, as demonstrated in the following statement from a daughter: well, we hope that he can stay here. that they don’t move him to… down to the sick ward. because here he… he knows those who work here. we have talked about it… he is allowed to stay here if he gets ill… sick… he is allowed to stay. because the last week my mother was alive, she was moved down there… to the sick ward. and that was… they couldn’t do anything other than give her palliative medication. she could have had that here. she could have stayed in her own room and… spent the last days… not in a cold… impersonal room down there. […] so, we hope that … he can stay here. this is his room, and it has been his room for the last few years… so he can stay here. similar concerns were also expressed by the senior representatives. one of them, whose late spouse had to move into an alf when the local nursing home was closed down, stated the following: they told me that he would receive the same services in the alf as he did in the nursing home. and that he could stay there for the rest of his life. of course, within reason with regard to other illnesses. but, eventually, they told us that he couldn’t [stay there] because he couldn’t stand on his own legs. i felt it was paradoxical and sad. […] i understand, of course, it was challenging. but i told them that they had promised that he could stay there. they told me that they were not sufficiently staffed. but, okay, since i nagged, they allowed him to stay. these statements demonstrate dilemmas and uncertainties resulting from the discrepancy between the intentions and staffing of alfs, on the one hand, and the residents’ changing and evolving care needs, on the other hand. local and everyday adjustments at the community level, the mismatch between the needs of the population and the intentions and staffing of alfs could eventually result in the shutdown of alfs, as demonstrated in the following example narrated by a health care professional: earlier, the municipality also had a care center in [remote area] with seven apartments intended for the elderly. eventually, it was empty because no services were provided there, at least in the beginning. they didn’t receive any help in the evenings or on weekends. people said that there was no point moving to the apartments. they would rather stay at home or move to an institution. then, we had staff there for a period, and they received help in the evenings and on weekends. but it stopped. too expensive for the municipality, i guess. and the result was that the care center was sold. apparently, this particular alf filled a nonexistent need. the potential residents, who were healthy enough to live in the alf, preferred to stay in their own homes. meanwhile, those who needed more comprehensive services (including evenings and weekends) would rather live in a nursing home. in other municipalities, local adjustments were made to meet the health care service needs of the population. for example, in one municipality, alfs were simply used for more urgent purposes, as described by one health care professional: for periods, the alfs were empty. the apartments were empty. we used them for short-term nursing home placements. although alfs are formally defined as residents’ homes, the interviewed health care professionals provided examples of local ad hoc adjustments compromising residents’ control and involvement in decision-making. for example, in one municipality, apartments rented by one person could be used as double rooms when there were rooming shortages: the apartments have one room and a living room with kitchen. but they have taken… one person lives in the bedroom and another in the living room and kitchen. there are two people in each apartment! in some municipalities, the alfs and nursing homes were located close to each other or even in the same building. all care and other expenses were included for the nursing home residents, whereas allocated care services were specified in contracts for the residents in the alf. one health care professional describes adjustments made to reduce any potential inequities resulting from the different systems for service user payments and the service allocation for the nursing home and alf residents: let me give you a classic example. today, the weather was beautiful. and i figured i would make waffles and bring all the residents outside. and for the ones on short-term care, it’s all inclusive. but for the residents in the assisted living facilities, it’s not. because they have [a certain amount of] allocated services and hours. but we don’t think like that. no! we spend hours with them. and they can have dinner, if they wish to. the senior representatives also expressed concerns regarding the potential for inequities inherent in the two different systems for user payment and service allocation. they were particularly concerned about the establishment of alfs at the expense of local nursing homes and that [qualitative research in medicine & healthcare 2019; 3:7826] [page 53] article no nco mm er cia l u se on ly the subsequently increased costs for individual residents would become a barrier to help-seeking: in the new assisted living facility, there was a new model for payment. you pay according to the size of your room and the common spaces. you pay per square meter. and you pay for food, you pay for domestic help, you pay for laundry. you have to pay for everything. and when everything was added up… the politicians who had decided did not know how much it was. it was more than the minimum pension. [interviewer: do you think that this made people stay in their own homes longer?] absolutely! even with compensation from the municipality’s so-called relief fund, it’s wrong. it’s wrong that you end up on poor relief in old age. that you don’t have enough money to pay for yourself, so the municipality has to pay for you. it is wrong. people should not be made [economically] dependent. in this particular municipality, local adjustments in the form of the establishment of a relief fund were necessary to prevent any potential inequities resulting from the establishment of alfs in the municipality center and the corresponding shutdown of local nursing homes in the surrounding remote areas. discussion the results from this study indicate that assisted living in rural areas challenges the norwegian health care policy ambitions of equity, quality, and aging in place. some of these challenges are closely associated with the rural context, whereas others may be relevant beyond this context. aging in place aging in place is an ambiguous concept.16,36 the concept may refer to aging in one’s own home.15 the ideal of aging in place conceptualized as aging in one’s own home faces challenges resulting from a mismatch between the care needs of home-dwelling people and the extent of home-based services that is possible to provide in people’s homes. this mismatch may be particularly evident in rural areas characterized by large geographical distances between municipality centers, where health care services are typically located, and remote communities.37,38 the health care professionals and senior representatives interviewed in this study acknowledged this mismatch and confirmed that it was a driver for moving older people with comprehensive care needs into alfs. the results from this study indicate that alfs are not considered as homes by the residents, health care professionals or family members. in previous research, aspects such as autonomy, self-identity, close social relationships, mutual respect, comfort, involvement, and security have been identified as crucial for experiences of homeness in alfs.23 our data included examples illustrating challenges particularly with respect to autonomy and involvement (e.g., the use of residents’ apartments as double rooms when there were rooming shortages) as well as security (e.g., examples of people disappearing from alfs during winter). moreover, there were examples illustrating challenges with respect to maintaining close social relationships (e.g., the husband hesitating to play his accordion for his wife because he considered the alf as someone else’s arena). a second meaning of the concept of aging in place is aging in one’s community.16 previous research has demonstrated that the move to alfs in a community where one has important place attachments assists with the transition and process of becoming at home.23 in rural areas, the localization of alfs in municipality centers challenges the ideal of aging in place, conceptualized as aging in one’s community. when alfs are located in municipality centers, moving from one’s own home to an alf may imply moving away from one’s local community. wiles et al. have demonstrated that older adults emphasize aspects such as a sense of attachment or connection, including aspects such as attachment to place, when given the opportunity to consider what makes a living environment acceptable,16 and seniors in rural communities have reported concerns related to stress and mental strain related to being moved from their communities to receive care.37 a third meaning of the concept of aging in place has been suggested, that is, the ability to remain in the same living facility, whether it is one’s own home or an alf, until one dies.39,40 the results from our study indicate that assisted living also challenges the ideal of aging in place, conceptualized as aging in oneplace. the family members and senior representatives expressed concerns regarding residents’ future prospects with respect to continuing to live in an alf in the face of increased care needs. previous studies have demonstrated that residents are often unable to reside in alfs until they die.39-41 quality norwegian alfs vary greatly with regard to how they are staffed; some provide 24-hour staff, while in others, care is provided by home care service personnel. for the municipalities included in this study, the alfs were served by home care services. the results from this study indicate that alfs may challenge the ideal of quality care, conceptualized by norwegian health care authorities as being characterized by predictability, familiarity, and continuity.5 the issue of continuity was raised by the senior representatives, who expressed concerns regarding the possible negative impacts of shifting and rotating staff on residents with dementia. they also questioned whether home care service staff possessed the necessary competence to provide care for people with dementia. moreover, issues regarding safety, particularly for alf residents with dementia, were discussed by both the health care professionals and senior representatives. safety and staff [page 54] [qualitative research in medicine & healthcare 2019; 3:7826] article no nco mm er cia l u se on ly competence were not questioned by the family members. however, it was apparent that the staffing of alfs (who is who) was enigmatic and, hence, neither predictable nor familiar for some family members. scholars have noted that assisted living is no longer the place it was designed to be. [a]ssisted living has become the new nursing home (p. 216)24 and a discrete node that services residents similar to those in [nursing homes] and in a similar fashion (p. 108).42 in the present study, the health care professionals, senior representatives, and family members all noted that the alfs were largely designed for a group of residents different from those who are currently inhabiting them. moreover, the differences between alfs and nursing homes were minimal with respect to the care needs of residents and the level of care provided. the blurred line between alfs and nursing homes may pose a challenge to the principle of familiarity. the family members’ accounts indicated that the alf environments, resembling more traditional institutions, restricted the leeway of both residents and family members. moreover, the ambiguous status of alfs as neither homes nor nursing homes challenges the principle of predictability. both the health care professionals and family members reported confusion and disagreements regarding responsibilities. the health care professionals experienced situations in which family members expected them to take on responsibilities that, formally, were not theirs, whereas the family caregivers expressed uncertainty regarding what they could expect from health care services. health geographers have pointed to the increased blurring of boundaries between institutional and non-institutional settings and the redistribution of responsibility for care between statutory, voluntary and private bodies, friends and families (p. 745).13 the uncertainties regarding future care needs and the ability to continue residing in alfs in the face of increased care needs expressed by both the family members and senior representatives are also at odds with the principles of predictability and continuity. the use of alfs as short-term nursing home placements and the use of alf apartments as double rooms to compensate for rooming shortages reported by the health care professionals in this study could be framed as accommodations of nationally regulated services to local conditions.3,4 nonetheless, such adjustments challenge the principle of predictability. moreover, the necessity of permitting such accommodations constitutes a reason for reflecting on whether the national policies prioritizing the establishment of alfs over nursing homes are in line with the population’s service needs.26 equity assisted living may pose a challenge to the norwegian health policy aim of providing equitable health care services to all citizens regardless of age, gender, ethnicity, financial status, social status, and place of residency. notably, the systems for funding and service user payment are different for people living in alfs and those living in nursing homes. according to norwegian legislation, municipalities can demand up to 75% of the monthly income from people living in nursing homes, and all care and other expenses (with the exception of clothes and personal items) are included. people living in alfs typically pay rent and other expenses, and the care services provided are specified in contracts based on assessments of individual needs.26 norwegian health care authorities have acknowledged that such financial and structural variations may result in inequities: different sets of rules may result in different expenses for the same services, depending on whether the municipalities offer placement in institutions or the services are provided in owned or rented housing [p. 51, authors’ translation].10 despite the ad hoc adjustments by health care professionals in their everyday practices and the establishment of systems for economic support reported in this study, the different systems for funding and service user payment challenge the principle of equity. moreover, the results from this study indicate that older adults’ possibilities to age in place are affected by the place of residency as a result of large geographical distances and the localization of health care services, including home care services and alfs, in municipality centers. conclusions the existing ideal of aging in place faces challenges resulting from the characteristics of both health care service users and health care services as well as challenges arising from geographical contexts. in rural areas associated with large geographical distances from municipal centers, such as the communities included in this study, the provision of high-quality health care services in people’s homes remains particularly challenging. consequently, alfs have been introduced as a compromise: a home away from home. in rural areas, where alfs are typically located in community centers, this homemay be particularly far from home. however, alfs are neither homes nor nursing homes, and this middle ground between homes and nursing homes faces challenges related to safety, evolving care needs, and responsibilities which are being experienced by several parties. these challenges are at odds with health care policies stating that predictability, familiarity, and continuity are among the most significant aspects of high-quality services. the national policies stimulating the establishment of alfs may also be at odds with the ideal of equity since different systems for service allocation and user payment are operated in alfs and nursing homes. as a measure to safeguard the necessary competence of community health care services, the norwegian government has encouraged intermunicipal collaborations. moreover, a process of fusing smaller municipalities into larger units, the so-called local government reform, has been initiated.43 in the years to come, it will be necessary [qualitative research in medicine & healthcare 2019; 3:7826] [page 55] article no nco mm er cia l u se on ly to monitor whether such initiatives promote or counteract the ideals of aging in place, equity, and quality health care for older adults in rural areas. furthermore, health care authorities should evaluate whether the continued prioritization of assisted living is suitable for managing the challenges arising from an aging population in rural areas and beyond. future studies should assess to what extent alfs are actually cost-effective, meet the needs of residents and family members, and are places health care professionals can provide high quality care. moreover, the involvement of residents, family members and health care professionals in the decision making, planning and design of future community-based care will contribute to the establishment of care and living arrangements that are in line with the needs of the population served. this study involved relatively few participants and was conducted in a specific geographical context. moreover, assisted living facility residents were not included in the study. the results must be read and applied considering these limitations. two researchers with different clinical, theoretical and methodological expertise were involved in the research process and thereby provided rich opportunities for investigator triangulation in order to reduce the risk of biased decisions and interpretations.44 we have attempted to make the study interpretively rigorous by providing the readers with sufficient information regarding the context for our research and through the extensive use of quotations from the interviews. however, more research involving larger samples in other geographical contexts is necessary to extend our knowledge of assisted living. importantly, future research should include assisted living facility residents. references 1. anttonen a, sipilä j. universalism in the british and scandinavian social policy debates. in: anttonen a, häikiö l, stefánsson k, eds. welfare state, universalism and diversity. cheltenham: edward elgar; 2012. pp 16-42. 2. vabø m. norwegian home care in transition heading for accountability, off-loading responsibilities. health soc care 2012;20:283-91. 3. vabo si, burau 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[qualitative research in medicine & healthcare 2019; 3:7826] [page 57] article no nco mm er cia l u se on ly layout 1 introduction in many parts of the world, it is common for pregnant women to refer to lay knowledge (i.e., a set of meanings and explanations of a disease, rooted in cultural beliefs and customs) in preventing complications related to health during childbirth.1-3 lay knowledge is typically acquired from family, friends, and the local community, as demonstrated among pregnant women in multiple african societies.2-4 lay knowledge about pregnancy, although considered as non-scientific, is reassuring to many pregnant women.5 thus, women may turn to their mothers, sisters, mothersin-law, or others close to them with questions about pregnancy and childbirth, whether it is caring for the mother and child or learning about traditional practices and specific postnatal rites varying from tribe to tribe. lay knowledge has a profound influence among women and families whose communities emphasize connections to cultural traditions, particularly as they pertain to maternal health.6-10 in this context, “culture” refers to the local contexts and the dynamic web of meanings through which individuals, families, and communities interact.11 as such, culture is an lay knowledge regarding the prevention of complications related to childbirth: perceptions of congolese pregnant women claudine tshiama,1 gédéon bongo,2 oscar nsutier,1 mukandu basua babintu1 1teaching and administration nursing care, nursing sciences, higher institute of medical techniques, kinshasa; 2department of biology, faculty of sciences, university of kinshasa, kinshasa, democratic republic of the congo abstract during pregnancy, women sometimes choose certain practices based upon the experience of their family and/or their vicinity to anticipate complications that may occur during childbirth. the main objective of this study is to understand the motivations and perceptions of pregnant women on lay knowledge in the prevention of complications related to childbirth among a sample of congolese women. we conducted this study at n’djili referral hospital in kinshasa, democratic republic of congo, using a qualitative phenomenological survey and indepth face-to-face interviews. we interviewed seven women on the phenomenon of lay knowledge practice in the prevention of maternal difficulties and analyzed the data using thematic coding. we provided a consent form to the participants and were careful not to include identifying information. three main themes emerged: i) discussion of complications related to pregnancy and delivery, ii) perceptions about lay knowledge in preventing complications related to childbirth, and iii) suggestions from participants about using lay knowledge in healthcare settings. based upon data collected, we argue that lay knowledge about pregnancy can be integrated into formal antenatal training when appropriate and, in doing so, we can build trust among pregnant women toward professional medical instruction. correspondence: claudine tshiama, teaching and administration nursing care, nursing sciences, higher institute of medical techniques, kinshasa, democratic republic of the congo. tel.: +243 854409147 e-mail: claudinetshiam@gmail.com key words: perception; pregnancy; lay knowledge; prevention; complication; childbirth. contribution: this work was carried out in collaboration among all authors. ct and mbb designed the study, and wrote the protocol, ct and on carried out the fieldwork. ct interpreted the results of the interview, ct and gb wrote the first draft of the manuscript and managed the literature search. all authors read and approved the final manuscript. conflict of interest: the authors declare no conflict of interest. availability of data and materials: all data generated or analyzed during this study are included in this published article. ethics approval and consent to participate: the ethics committee of public health school of kinshasa, faculty of medicine, university of kinshasa approved this study (esp/ce/038/2015). the study conforms with the helsinki declaration of 1964, as revised in 2013, concerning human and animal rights. all patients participating in this study signed a written informed consent form for participating in this study. informed consent: written informed consent was obtained from a legally authorized representative(s) for anonymized patient information to be published in this article. received for publication: 7 december 2019. revision received: 11 may 2022. accepted for publication: 11 may 2022. publisher’s note: all claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher. ©copyright: the author(s), 2022 licensee pagepress, italy qualitative research in medicine & healthcare 2022; 6:8740 doi:10.4081/qrmh.2022.8740 this article is distributed under the terms of the creative commons attribution-noncommercial international license (cc by-nc 4.0) which permits any noncommercial use, distribution, and reproduction in any medium, provided the original author(s) and source are credited. [page 12] [qualitative research in medicine & healthcare 2022; 6:8740] qualitative research in medicine & healthcare 2022; volume 6:8740 no nco mm er cia l u se on ly ever-changing, continuous, and emergent set of shared ideas, meanings, and values acquired by individuals as members of a society.12 culture thus provides a context in which people come to understand their health status and to comprehend options for diagnoses and treatments.1 according to desgagné,7 pregnant women and their communities in sub-saharan africa often believe that the practice of lay knowledge during pregnancy is the most favorable way to protect, help, and even feed future mothers. most lay knowledge revolves around three axes: diet in relation to pregnancy, religious beliefs, and domestic work. lay knowledge is commonly practiced outside of the health system (i.e., outside of the health education received during antenatal consultations and often without the knowledge of medical staff).13-16 studies suggest that the main motivation for women’s use of lay knowledge is that, despite all the activities organized by antenatal services, antenatal classes seem to be of little help to future parents.17-18 in the democratic republic of the congo, lay knowledge about pregnancy and childbirth is poorly documented with little knowledge among nursing staff. this study was inspired by observations made regarding pregnant women in kinshasa who continue to trust and rely on lay knowledge from friends and family as sources of information concerning their gestational state and its consequences. in kinshasa’s maternity hospitals, pregnant women attend health education classes daily during their pregnancy; however, formal antenatal instruction is often different from, or even contradictory to, lay knowledge, skills, and practices. this research is intended to contribute to the production of new knowledge about relationships among pregnant women, their community (sources of lay knowledge), and formal, antenatal instruction by nursing staff (sources of medical knowledge). specific objectives are: i) to identify lay knowledge used by congolese pregnant women in preventing complications related to childbirth; ii) to disclose their perceptions about lay knowledge; iii) to understand their motivations for using this lay knowledge, and iv) to inquire whether pregnant women advise the use of lay knowledge during formal antenatal classes supporting pregnant women in the acquisition and maintenance of healthy lifestyle habits. materials study area data collection was conducted at the n’djili referral hospital, a health structure representative of the n’djili health area in the n’djili health zone. it is located in the municipality of n’djili, on the eastern outskirts of kinshasa. its creation dates back to 1952, the year in which a dispensary belonging directly to the general hospital was built in the current center of this municipality where only external primary health care had been provided. although it was under the control of the general hospital, the dispensary was placed under the direct supervision of the center of kasangulu until 1960. in view of the increase in population and health needs, the authorities at that time decided to build a dispensary and a maternity hospital in 1958, thanks to the cooperation of the congolese government, the world health organization (who), the united states agency for international development (usaid), and other international organizations that had provided funding for the construction of the buildings that house the current hospital in n’djili municipality. the n’djili referral hospital is a complex institution with several services, including surgery, pediatrics, internal medicine, nutrition and dietetics, gynecology, and nursing. this research was conducted in the gynecology service. study design as an exploratory, qualitative research design intended to better understand congolese pregnant women’s perceptions of lay knowledge in the prevention of maternal complications, we chose phenomenology as the approach because of phenomenology’s emphasis on systematic description of what people perceive in their day-to-day experiences.19 in phenomenology, the main objective is the study of meaning, rather than its explanation of causes.2021 phenomenology explores what is considered to be commonsense knowledge, i.e, knowledge that is already widely present in the community being studied.22 sampling, sample size, and population using a purposive sample,23 this study concerns pregnant women living in kinshasa city and attending the n’djili referral hospital for antenatal consultation. we were particularly interested in pregnant women who use lay knowledge to prevent complications related to childbirth. we recruited participants during the antenatal consultation with the consent of nurses. we initially interviewed 11 women; however, we noticed that there was a redundancy of information, i.e. we reached saturation, so we limited our data to seven interviews that demonstrated the most diversity in responses.24-26 sample selection included four criteria: each participant was i) a married woman, pregnant for the third time or more, ii) had used a practice of lay knowledge to prevent a given maternal complication, iii) was able to express herself in french or lingala, and iv) understood the consent procedure and agreed to participate in the study. to preserve anonymity, respondents are identified as r 1-7 (see table 1). participants’ age ranged from 29 to 40 years. methodology data collection we chose a phenomenological method and conducted in-depth interviews using an audio recorder to collect [qualitative research in medicine & healthcare 2022; 6:8740] [page 13] article no nco mm er cia l u se on ly data. the purpose of in-depth interviews was to gain understanding of what participants think and to learn things that cannot be observed directly, such as feelings, ideas, intentions, etc.27-30 among the specific topics that we asked about were how pregnant women feel in general about pregnancy and potential complications, what traditional practices were used to prevent complications in pregnancy, and how pregnant women rate traditional practices in relation to advice received from healthcare providers during antenatal classes. in order to verify the quality of the instrument, a preliminary interview was conducted with two pregnant women at the mikonga area in the n’sele health zone. this pretest interview became a guide,31 helping us adjust various questions for clarity, specificity, and so forth. at the beginning of each interview, an introduction of the interviewer was performed to the interviewee by providing his full identity and describing the purpose of the study. contact with respondents took place after their antenatal consultation. interviews took place in a quiet room not far from the antenatal room. one member of the research team conducted the interview, while the other recorded the interview using a smartphone. the team was able to converse with the participant in both commonly spoken languages (french and lingala). each interview lasted for approximately 30 minutes. ethical considerations after the purpose of the study was clearly explained to the participants, and a consent form was provided for each person. interviewees were told that they didn’t have to answer questions and that they could end the interview at any time. they were also informed about the confidentiality of their responses. interviews were conducted in a secluded setting for reasons of confidentiality. the ethics committee of public health school of kinshasa, faculty of medicine, university of kinshasa approved this study. interviews took place between december 23rd, 2015, and january 2nd, 2016, depending on the availability of respondents. to minimize data transcription bias, we listened to interviews three or four times to ensure that transcriptions were as accurate as possible.32-34 transcripts were coded into themes using syntactic analysis, according to a three-column data matrix: sub-theme, categories and verbatim (see appendix 1, 2 and 3).35,36 results perceptions regarding pregnancy complications being pregnant has several meanings for a woman as well as for her community. respondents generally regarded pregnancy to be a happy phenomenon, with some describing it as a divine blessing: it is not a suffering. pregnancy is a blessing. you will see it as suffering unless you have picked it up, that is, you did not expect to have that pregnancy or to give birth. (r5) for me, pregnancy is a happy event for the woman. it is a great joy in the family. (r4) for me, pregnancy is a blessing from god, although sometimes it comes with a few [concerns] not to eat this or that. (r1) for me, pregnancy is a blessing. (r6) though the pregnancy is seen in positive ways, participants also reported that it has several complications, which the future mother must endure, and that brings fear for some women. worrisome complications include heavy weight of the child, the child possibly presenting a macrocephaly, or having labor dystocia or an otherwise severely painful childbirth: for me, one of the difficulties or complications during childbirth is that the child is big and the delivery is painful. (r1) on my part, i have not yet experienced a complication during all my deliveries, but what i fear is the birth of a child with a big head and not breathing normally. (r2) in my opinion, the complication that can occur during childbirth is a caesarean section. but as far as i’m concerned, i have never undergone any caesarean section during all my deliveries. (r4) well, the difficulties... except only the intense pains that i feel in that specific time during the delivery. those pains are unbearable. (r6) well, for me maybe as you did your pregnancy, if you didn’t eat enough, and maybe you suffered from time to time, you will see that on the day of [page 14] [qualitative research in medicine & healthcare 2022; 6:8740] article table 1. research respondents. age marital number (years) status of children r1 40 married 8 r2 35 married 5 r3 38 married 3 r4 38 married 5 r5 37 married 3 r6 30 married 4 r7 29 married 3 no nco mm er cia l u se on ly childbirth it will be a little complicated; there will not be enough breath to push during the childbirth. that’s how i see it. (r3) most respondents associated pregnancy and childbirth with suffering; however, some considered these symptoms to be the normal functioning of the body. for some, non-compliance with food bans can constitute the cause of such complications, whereas other respondents reported that suffering occurring during childbirth is the will of god or a normal circumstance in the life of a woman: for me, these difficulties represent the suffering that can be caused by the problems that people can have in the community [society]. (r1) this complication or difficulty for me just represents a certain functioning of the human organism depending on each individual. (r5) for me, this complication represents the non-respect of the food bans of lay knowledge or it is linked to fetishes. (r2) despite potential suffering, participants were prepared to face these challenges, believing that it is a phenomenon that has to happen in their lifetime: for me, this complication is normal because it is what is promised in the bible— that the woman will give birth in pain. we do deliver in pain and difficulties, so no ease! (r3) for me, this difficulty is only a situation that happens. (r7) although participants associated pregnancy with hardship, they also thought that complications could be prevented to some degree by respecting food bans and adopting a diet that would ease childbirth, moderating sexual intercourse, and continuing to remain active, albeit in moderation: i don’t eat foods that contain too many vitamins such as beans, so that the child doesn’t increase more weight and therefore goes out easily during childbirth. (r1) i do not eat the fish called “congo ya sika” to [prevent having] a macrocephalic child and even less who is not breathing well. (r2) as to me, when i’m fat from the advice we receive from the antenatal class, i eat twice as much as what i’ve always eaten usually in the non-pregnant state. i eat too much iron for the anemia not to happen. (r2) in terms of sexual life, i often look at the evolution, especially at the beginning of pregnancy. if i experience discomfort, i abstain from intercourse. also, i cannot allow having a position which will be discomfortable to me. (r7) i work, walk, and do not remain still until the day of childbirth [so that] the child is born without delay. (r1) for me, i don’t do the heavy work to prevent or protect myself against abortion. (r6) perceptions of lay knowledge in preventing complications related to childbirth preventive measures taken to reduce pregnancy complications typically include following religious and cultural traditions, often in conjunction with communal support: in my way of thinking, i find that these practices are simply a help. (r2) this way of preventing [protecting] oneself is a religious and cultural value for me. (r4) all these practices for me are just prevention... protection. (r7) some respondents expressed their beliefs as a result of direct experience (“it’s a personal experience.” [r3]), whereas others learned by observing women around them: i got this from my mother and older sisters. (r6) these practices of lay knowledge, i learned it from my mother and some friends. (r4). acquisition of lay knowledge through observation, in the minds of participants, thus gives pregnant women the opportunity to potentially avoid practices that could put their lives and the lives of their children at risk. furthermore, most respondents consider the lay knowledge to be more useful than scientific knowledge (“[i]t is the lay knowledge i use that is more helpful.” [r1]), although some think that both lay knowledge and scientific knowledge pursue the same goals: as for me, i find antenatal classes more theoretical, in the sense that those who sometimes give them have not even experienced this yet; and lay knowledge is more profound because it is a lived experience. (r4) [qualitative research in medicine & healthcare 2022; 6:8740] [page 15] article no nco mm er cia l u se on ly in my opinion, lay knowledge (prayer) and prenatal classes (medical knowledge) are equally important because if i confide only in prayer, the child may find himself in a bad position. it is the prenatal consultation that will let me know, and i will pray to god who will help me so that the child changes position so that i can deliver normally. (r5) as far as i am concerned, these practices compared to prenatal classes are also good, because they also help to bring the pregnancy simply to term and give birth normally. (r7) both practices (lay knowledge) and antenatal classes (medical knowledge) help. (r1) the lay knowledge is good, and is equal to the antenatal class. (r6) in addition, what drives pregnant women to resort to these practices of lay knowledge reflects some degree of doubt and fear about the future pregnancy. when asked if they shared their fears with nursing staff, participants sometimes demonstrated a lack of trust in antenatal staff. some felt that their own lay knowledge was sufficient, drawing a firm line between professional skills, on one hand, and lay knowledge accompanied by faith in god, on the other: antenatal classes are not an insurance. they are only a formality... but one thing is certain: we can indeed follow this as it should be, but in the end, nothing works, and there is only god and god alone who can help. he is the one who helps. (r5) what drives me to utilize lay knowledge despite the fact that i attend antenatal sessions is fear, the risk of having a macrocephalic baby and who would not breathe normally. (r2) well, what drives me to do these practices [apply lay knowledge] is the desire to prevent and protect myself from harm during childbirth, given what has already happened to me in life. (r7) i don’t share this with the antenatal officers because of their attitude to scold so often when we talk to them about this kind of thing. and also, they often follow what is written and don’t take into account what we bring them. that is why i avoid it. (r2) no, because i already know that what i use protects me, and i don’t think it’s important to share it with them. (r6) no, i don’t share this with the nursing staff, because it only involves me. (r7) one participant stated that although she didn’t talk about lay knowledge with professional healthcare staff, she would be interested in doing so: no, i don’t share these experiences with nursing staff, because i’ve never found an opportunity. and if i ever find one, i will. (r4) this statement suggests a willingness to open up about lay knowledge and customs, balanced by a hesitancy to do so, perhaps due to feelings that lay skills would not be accepted by professional staff. note the emphasis on “sharing,” suggesting that communication about pregnancy could be reciprocal, rather than unidirectional. proposals from participants using lay knowledge to the nursing staff asked for their advice about using lay knowledge in professional healthcare settings, respondents suggested that nursing staff working in prenatal consultation service integrate lay knowledge classes into antenatal health education. according to participants, these lay knowledge lessons could have a positive impact during pregnancy right up to delivery: let nurses working at antenatal also consider popular knowledge in prenatal classes so that the latter are a combination of medical knowledge and popular knowledge because it helps. (r1) some participants suggested that healthcare workers should be more attentive to patients’ understanding of pregnancy in order to facilitate exchange between lay and scientific knowledge and to help address the challenges arising from complications during childbirth: [s]ome pregnant women have more experiences than the nursing staff, and these experienced women may share their experiences too. (r3) [w]e propose that during education sessions or prenatal classes, opportunities be provided where women can ask questions or suggest their experiences of lay knowledge in order to share them and many other things. (r4) [a]nd, in turn, the nursing staff has to listen to us and not only speak. so, we listen to each other, because their teachings are not always the absolute truth (r3) moreover, some participants suggested the combination of scientific and lay knowledge to ensure their wellbeing and that of their children: for pregnant women, let them continue to come to [page 16] [qualitative research in medicine & healthcare 2022; 6:8740] article no nco mm er cia l u se on ly prenatal classes and do everything they know well to give them a safe childbirth. (r7) ... that they continue to use their non-medical practices and also go to antenatal classes to ensure their well-being and that of the unborn children. (r3) discussion use of lay knowledge to prevent complications related to childbirth findings in this study about faith in lay knowledge are consistent with research by huizink et al.,2 schneider,3 and winson4 reporting that in african communities, the gestational period is a time when nearly 100% of pregnant women make adjustments based on lay knowledge when adapting to the physical and emotional changes associated with pregnancy and the consequences they will face. according to desgagné,7 in sub-saharan africa, the context of motherhood is highly culturalized, so the experience of motherhood is inseparable from the family and community experience. the presence and support of family members as sources of lay knowledge is therefore essential for the culturally situated proper conduct of pregnancy and childbirth as well as the transmission from mother to child of a sense of belonging to the extended family and clan. the findings of this exploratory study suggest that congolese pregnant women tend to rely upon lay knowledge to explain, predict, and in some cases, endure the challenges of pregnancy. this is in contrast to findings reported by barry,15 who found that pregnant women in the guinean region perceive pregnancy as a rite of passage, confirming women’s marital status, rather than a challenge. complications during pregnancy and delivery are most often considered to be natural occurrences or the will of god affecting women in general among participants in this study. this seems different from findings reported by francois,36 who found that difficulties or complications during pregnancy more often are thought to be results of disobedience or transgression of prescriptions and prohibition during the gestation period, although women in this study did mention the importance of traditional food bans. with regard to prevention of childbirth-related difficulties, respondents of this study listed practices such as maintenance of food bans, prayer, walking, and working. this is consistent with the three axes—diet, religious practices and domestic work—described by barry.15 potential for using lay knowledge in professional healthcare settings suggestions collected during the interviews with participants in this study express the desire to share lay knowledge with professional healthcare providers and especially the desire to integrate the lay knowledge into antenatal classes. these suggestions are consistent with amuli and ngoma’s37 recommendation that a person in need of care should seek a good health professional who is sensitive to one’s cultural and spiritual beliefs and who will treat her with dignity and respect, regardless of the nature of the condition. carver et al.38 pointed out that the provision of antenatal services must be more responsive to the needs of future parents, including their beliefs and culture, rather than relying solely on the beliefs of health professionals about the care deemed appropriate during this period. as suggested by participants in this study, lay knowledge could be built into antenatal education so that nursing staff demonstrate awareness of and sensitivity toward patients’ beliefs, but also so that patients might be more trusting and accepting of professional medical expertise. conclusions this research focused on studying pregnant women’s perceptions of lay knowledge in the prevention of complications related to childbirth. the majority of our respondents consider lay knowledge and medical or scientific knowledge to be equally important, while some will also suggested that the former exceeds the latter. given their preference for lay knowledge, it is not surprising that most of our respondents expressed a desire for sharing and integration of lay knowledge in antenatal classes. although our sample was small, the consistency among our participants suggests that such integration— when efficacious, of course—would be widely appreciated among congolese women specifically, and african women more generally, thereby facilitating increased trust and acceptance of professional medical advice. as a limitation, the sample size was small, and our narrow focus of data collection did not allow us to consider other aspects of pregnancy such as stress, fear, and complex social dynamics within families and other social groups. references 1. nielsen-bohlman l, panzer am, kindig da. health literacy: a prescription to end confusion. institute of medicine (us) committee on health literacy, washington (dc), national academies press (us); 2004. 2. huizink ac, de medina pg, mulder ej, et al. coping in normal pregnancy. ann behavioral med 2002;24:132-40. 3. schneider z. an australian study of women experiences of their first pregnancy. midwifery 2002;18:238-49. 4. winson n. transition to motherhood. in squire c. (ed), the social context of birth. london: radcliffe publishing; 2009: pp.145. 5. fortin s. trajectoires migratoires et espaces de sociabilité: stratégies de migrants de france à montreal. phd thesis in anthropology, university of montréal; 2002: pp.335. 6. singh g, shariff a. determinants of maternal health care utilisation in india: evidence from a recent household survey. working paper series 2002;85:1-41. [qualitative research in medicine & healthcare 2022; 6:8740] [page 17] article no nco mm er cia l u se on ly 7. desgagné m. femmes autochtones et maternité. le médecin du quebec 2006;41:101-3. 8. fortin s, le gall j. neonatalité et constitution des savoirs en contexte migratoire: familles et services de santé. enfances, familles, générations 2007;6:16-37. 9. khanlou n, haque n, skinner a, et al. scoping review on maternal health among immigrant and refugee women in canada: prenatal, intrapartum, and postnatal care. j pregnancy 2017;2017:8783294. 10. rosliza am, muhamad hj. knowledge, attitude and practice on antenatal care among orang asli women in jempol, negeri sembilan. malaysian j public health med 2011;11:13-21. 11. dutta mj. culture-centered approaches. in thompson tl, (ed.), encyclopedia of health communication; 3:285-290. thousand oaks, ca: sage publications ltd: 2014. 12. dutta mj. communicating about culture and health: theorizing culture-centered and cultural sensitivity approaches. communication theory 2007;17:304-28. 13. tillard b. regard anthropologique sur l’éducation pour la santé. rev rech education 2000;25:153-64. 14. maria de fatima vm, remoaldo pca. mythes et croyances pendant la grossesse dans la région nord-ouest du portugal et ses implications dans la sante des femmes. rech soins infirm 2007;3:75-85. 15. barry mc. perceptions médicales et populaires dans la prévention des difficultés maternelles en milieu rural peul guinéen. afri studies rev 2000;43:1-18. 16. legault a. processus décisionnel de la femme enceinte immigrante: etude exploratoire chez des primigestes et secondigestes. thesis. university of montréal; 2014. 17. deave t, johnson d. the transition to parenthood: what does it mean for fathers? 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int j qual meth 2012;11:446-60. 32. stuckey hl. the first step in data analysis: transcribing and managing qualitative research data. methodolog issues social health diab res 2016;77:161-73. 33. halcomb ej, davidson pm. is verbatim transcription of interview data always necessary? applied nurs res 2006;19:38-42. 34. decarlo m. analyzing qualitative data in: scientific inquiry in social work. open social work education; 2018. accessed: july 1st, 2020. available from: https://scientificinquiryinsocialwork.pressbooks.com/chapter/13-5-analy zing-qualitative-data/ 35. loubere n. questioning transcription: the case for the systematic and reflexive interviewing and reporting (srir) method. forum qual social res 2017;18:15. 36. francois p. interprétations populaires des maux de la grossesse et remèdes traditionnels utilisés par les femmes enceintes en afrique: illustration par une enquête dans des villages sérères, sénégal. travail de fin d’étude en vue de l’obtention du diplôme de sage-femme bachelier, haute ecole provinciale mons-borinage-centre, institut provincial d’enseignement supérieur de nursing, 2009, 58pp. 37. amuli j, ngoma o. sociologie appliquée aux soins infirmiers. notes de cours deuxieme licence en easi, istm/kinshasa, 2015. 38. carver na, ward bm, tailbot la. using bradshaw’s taxonomy of needs: listening to women in planning pregnancy care. contem nurse 2008;30:76-82. [page 18] [qualitative research in medicine & healthcare 2022; 6:8740] article no nco mm er cia l u se on ly layout 1 introduction communication skills as metadiscursive artifact communication is said to be one of the most influential means of how physicians demonstrate professional competency. a physician with communication skills ensures their patients will better adhere to treatment recommendations, manage their own heath, and report greater satisfaction with their practitioners; in turn physicians will receive a lower incidence of medical malpractice suits, avoid burnout, and increase empathy for their patients.1-3 institutions like the national institutes of health and the association of american medical colleges, support and ensure the development of communication skills through governmental programs, curriculum requirements, and licensing practices.4,5 undergirding the value of communication skills in medicine is the assumption that communication is a skill that can be taught and learned. one of the most widely accepted methods for training medical students (mss) in communication is the use of a standardized or simulated patient (sp).6 in use since the 1960s,7 sps are employed and trained by medical schools to portray patients in simulated interactions with mss and evaluate mss on those simulated interactions. although other methods of simulation are used in medical education, including role-play among mss and technical simulations with mannequins, sps allow medical educators to create life-like cases with a variety of patient personae and pertinent diagnoses for students to repeatedly practice communication skills and receive feedback from sps. such experiential learning is said to actively simulate clinical practices and is the best practice for enhancing student learning of communication skills.8 even mss claim to prefer this method of communication skills training over other forms of simulation, listening to lectures, meeting with actual patients, or watching video-taped interviews.9 while the importance of developing physician communication skills is evidenced by its institutional validation the role of standardized patient assessment forms in medical communication skills education grace peters department of communication, university of south florida, tampa, fl, usa abstract communication skills training is a routine practice in medical education designed to instruct and evaluate future physicians in matters of patient-provider interaction. based on the united states medical licensing examination step 2 clinical skills (cs), medical schools across the united states hire and train standardized patients (sps) to act as patients in and evaluators of simulated interactions with medical students (mss). using discourse analysis, i examine how a computerized assessment form creates a particularized version of communication skills with implications for future practice. the 39-item checklist is completed by sps following a simulated interaction designed to prepare third-year mss for the step 2 cs. specifically, i analyze how the form is structured to make recognizable specific communication skills tasks, who should complete said tasks, and what varying degrees of communication skills competency are within the realm of task completion. by analyzing the form, i consider the agency of texts in medical education, the implications of technologizing communication as an institutional skill, and the limitations of enlisting sps to evaluate communication skills competency under the guise of a patient perspective. correspondence: grace peters, department of communication, university of south florida, 4202 e. fowler avenue, cis 1040 tampa, fl 33620, usa. e-mail: gem@mail.usf.edu acknowledgments: the author would like to thank dr. mariaelena bartesaghi for her continued guidance and support of this work. key words: medical education; standardized patients; discourse analysis; metadiscourse. conflict of interest: the author declares no potential conflict of interest. funding: none. conference presentation: earlier versions of portions of this paper will be presented at the 105th annual national communication association convention in baltimore, md in november 2019. received for publication: 8 april 2019. revision received: 25 july 2019. accepted for publication: 29 july 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:76-86 doi:10.4081/qrmh.2019.8213 [page 76] [qualitative research in medicine & healthcare 2019; 3:8213] qualitative research in medicine & healthcare 2019; volume 3:76-86 no nco mm er cia l u se on ly and extensive practice, the specifics of its metadiscourse are often overlooked. metadiscourse or talk about talk reflexively comments on communication, explicating norms of practice, and indexing the importance of communication broadly and in medical education specifically.10 taking a metadiscursive stance acknowledges communication in use as highly contextual and regulatory, meaning it implicitly and explicitly makes suggestions for what constitutes good or bad communication in a given situation. this approach stands in contrast to how communication is typically studied in medical education, as an ex post facto construct that can be measured, assessed, and known. instead, i employ discourse analysis to examine the metadiscourse of communication skills training with sps. metadiscourse is observable in conversations, narratives, classroom instruction, how-to guides, textbooks, and educational assessments.11-14 i attend to the construction of communication as it occurs in a computerized assessment form completed by sps after a simulated interaction with third-year mss, which is designed to prepare them for the step 2 cs licensing exam. the form is designed by a team of faculty and staff that coordinate a large medical school’s standardized patient program, the communication skills learning center (cscl). although the form used at cscl is specific to its location, it intertextually brings about the metadiscourse of communication skills, meaning the language of the form resonates with the genre of communication skills discourse visible in medical education and health communication research. the intertextual resonance of the form in turn validates its local use, which makes this analysis relevant to other sites of communication skills training in medical education. i argue the form designates, authorizes, and regulates ms and sp actions by making recognizable specific communication tasks, who should complete said tasks, and what varying degrees of skilled communication are. in practice, the assessment form decontextualizes communication from everyday practice and technologizes it as an institutional practice, which can be measured, assessed, taught, and learned. based on the results of my analysis, i make practical suggestions to improve sp-based communication skills training, which i argue has impacts for sps, mss, and future patients. i ask the following: how does cscl construct communication skills in a computerized assessment form? what are those communication skills? who are communication skills relevant for? and what are the implications for current and future medical practice? standardized patients in communication skills training the ability to evaluate ms’s communication skills through role play interactions with sps hinges on devices that assess student competency. there are dozens of models that aim to describe and measure the best practices of communication, including the kalamazoo consensus statement,15 the rochester communication rating scale,16 and the patient-perception of patient centeredness.17 such models are widely used tools, regarded as valid and reliable means for establishing a general sense of effective patient-provider communication, and considered accurate and effective analyses when completed by sps.18 in a narrative review of communication skills models, king and hoppe19 identify six features of physician communication skills present in nearly every tool: i) foster a relationship with the patient; ii) gather information; iii) provide information; iv) make decisions with a patient; v) appropriately respond to emotions; and vi) enable diseaseand treatmentrelated behavior. medical schools are not required to adopt one particular model but instead independently determine what skills should be learned and how to measure competency, often through adopting one particular model, creating an amalgamation of models, or developing their own model, any of which frequently stands in as the communication curriculum.20 however, taking a metadiscursive stance on communication skills competency shifts the focus from the validity, reliability, and generalizability of communication skills models to what actually occurs in interaction, which constitutes those skills. to analyze sp practices from a metadiscursive stance, one must take the approach that what agents do in interaction is consequential to local simulated activities, including assessment form completion. furthermore, taking a metadiscursive stance towards computerized assessment forms offers insight into the professional knowledge of communication skills (p. 192).21 in their study of communication skills training with sps, atkins et al.22 theorize simulation through goffman's frame analysis, to argue talk is always performance in context, especially in professional...and institutional ones (p. 1). essentially, in simulated contexts, there are multiple interpretive schema or frames available to sps – performing scripted patients, reflecting the scripted patient’s potential emotions, enacting those emotions, and evaluating the ms’s communication skills. similarly, mss most often recognize the context of simulated interactions as artificial, and orient to performing a good doctor, one who must balance being competent in medical diagnosis and communication skills, all while portraying a sense of authentic self.23 the team goes on to note, candidates who can handle the social and linguistic complexity of this somewhat artificial, standardized situation score highly – yet what is being assessed is not real communication but the ability to voice a credible appearance of such communication (p. 7). in essence, doing well in a simulated interaction is not ipso facto skilled communication with actual patients. similarly, in investigating how successful communication occurs in simulated medical interactions, roberts and sarangi24 note students achieving high scores are in [qualitative research in medicine & healthcare 2019; 3:8213] [page 77] article no nco mm er cia l u se on ly tune with sps speaking styles and integrate authority with solidarity. in contrast, unsuccessful students are stylistically dissonant, use canned statements that create a sense of trained empathy, and do not take the patient with them. (p. 113). with the goal of communicating their results to medical educators, the discourse analysts challenge psychological notions like empathy or rapport, which are not interactionally visible and instead adopt gumperz’s25 view of styles to suggest tools for self-analysis in real patienthealth care professional communication (p. 114). in a follow-up study, roberts et al. offer a taxonomy of communicative style to accommodate the interactional findings of what makes for good and poor communication in simulated interactions (p. 200).26 by creating interactional maps that easily compare communicative styles the team evidences what works and what does not. however, mss who are regarded as skilled communicators demonstrate the particular features of communication distinct from actual medical interactions. for instance, atkins27 uses corpus linguistics and conversation analysis to compare simulated and actual general practice consultations, noting that successful mss use the phrase tell me more about... more often that practicing physicians. similarly, in a comparative study of simulated and actual patient-provider interactions, de la croix and skeleton28 note the simulated interactions contain more sp interruptions (vs doctor interruptions in actual consultations), sp topic selection utterances (vs physician topic selection utterances in actual consultations), and sps initiating closing sequences (vs physicians ending the interaction in actual consultations). in this, they note how both sps and mss orient to assessment forms in the simulated interactions as a means for how to go on. seale et al.29 also explain the hybrid nature of simulated interactions, which includes the management of skills-based discourses visible in assessment forms and interpersonal discourses. while simulated interactions do vary from data on patientprovider interactions, they continue to serve as institutional resources.30 in sum, skilled communication in the context of simulation is not only different from actual consultations but is often oriented to notions found in institutional documents, like computerized assessment forms. the broad institutionalization of communication skills models means that medical schools continue to prefer traditional social scientific models that assess ex post facto constructs like empathy rather than develop robust interaction-based tools that allow students to reflexively engage their own performances in both simulated and actual interactions. by taking metadiscursive stance on the study of communication skills, i attend to what actually occurs in sp practices, namely the interactional accomplishment of completing a computerized assessment form. a great deal of attention has been paid to the nature of simulated interactions, but little research attends to how institutional documents, assessment forms in particular, afford and constrain notions of communication skills. i suggest such forms structure and enact agency in forging standards of communication skills competency for simulated interactions. in turn, what makes for a skilled communicator in the context of medical education is an orientation to the standards of evaluation created, regulated, and maintained by institutions of medical education. so, what are those standards? what strategies are used to maintain said standards? and how can one know? discourse analysis discourse analysis describes both a metatheoretical orientation towards doing research and a methodological toolkit, which affords a metadiscursive analysis of communication skills.31 metatheoretically, discourse analysts reject hidden or cognitivist explanations in favor of questioning how actors in the visible minutia of everyday life forge reality.32 as a discourse analyst, i expand the notion of actors to include nonhuman and human agents. this relational perspective takes a practical turn towards investigating how visible interactions real-ize, or make real the world we live and act in tracy and mirivel (p. 154).33-35 anything is data for the discourse analyst: texts, video recordings of face to face interactions, material objects, websites, organizations, etc. in interpreting and analyzing data from the metatheoretical positions described above, i take a synthetic approach to doing discourse analysis meaning i draw on a wide range of empirical methods including conversation analysis, membership category analysis, politeness theory, discursive psychology, interactional sociolinguistics, action-implicative discourse analysis, and critical discourse analysis.36,37 the goal in doing discourse analytic work is not to simply describe, summarize, or point out interesting features of interaction, but to do analysis.38 moreover, i adopt a practical stance towards doing discourse analysis, which means i aim to use analytical insights to develop more productive practices, which for communication skills training in medical education means developing educational practices that advance patient-provider communication with impacts for health outcomes and quality of life.2,39 texts as agents fundamentally, texts like the computerized assessment form i analyze are agents. texts do things, both on their own and with people. cooren40 describes the hybrid nature of textual agency by discussing how a manager and a post-it exchange properties. the manager not only writes a reminder on the post-it, but the post-it reminds the manager what needs to be done. texts perform multiple actions: asserting, committing, directing, declaring, and expressing.40 it is by analyzing the interactional resources visible in texts that one can more robustly analyze the role of nonhuman agency, and for this project practices that explicate communication skills. [page 78] [qualitative research in medicine & healthcare 2019; 3:8213] article no nco mm er cia l u se on ly texts are strategically written and deployed. often outliving their original authors texts take on a uniquely independent form.41 however, the utterances of authors are a dynamic interplay of voices and values. intertextuality refers to how texts are embedded with the traces of other texts.42 when texts are infused with authoritative discourses, like those of science, psychology, or medicine, they in turn authorize the text and actions it accomplishes. analyzing how texts intertextually draw on an authoritative discourse, as well as the pronominal, structural, and punctuational details illustrates how they perform in institutional practice. forbes43 notes how an adhd screening device is strategically void of first-person pronouns (e.g., a prisoner of the moment), which affords the reader a broad interpretive range (do i say i’m a prisoner of the moment? do others say i’m a prisoner of the moment? am i a prisoner of this moment?, etc.) and leads to a more likely diagnosis of a learning disability. galasiński’s44 examination of the beck depression inventory highlights how texts require readers to find themselves within the text (p. 516). when readers are required to answer assessment items, they are restricted to what has been asked and interactively put on the discourse (re)presented (p. 506).45 however, texts are not unquestionably adopted. the major findings of the galasińki’s aforementioned study is that participants often reformulate, recontextualize, and challenge assessment items. similarly, in investigating how quality of life is discussed in psychological interviews, antaki and rapley46 explain how an interviewer using an institutional interview protocol jointly manages an interaction with a client about their subjective feelings. even in mainstream communication skills research, there is a recognition that assessment forms may not capture all of a sp’s concerns.47 the role of texts in sp practices is not to be ignored. while sps and mss orient to assessment forms in simulated interactions, what those forms suggest and what actions they perform is not entirely known. therefore, i begin with explicating and analyzing the particular features of the assessment form. in sum, by using discourse analysis to the study communication skills training in medical education, i highlight the impacts of human and nonhuman agents, the metadiscursive values of communication skills assessment forms, and the strategies forms use to ensure institutional protocol. i do not answer the question of whether the assessment form accurately represents what communication is, nor do i suggest the assessment form is a lone agent in the construction of communication. my analysis of the form itself is consequential, and through it i aim to contribute to the discourse of communication skills and impact the institution(s) i work with. the communication skills learning center the cslc is an associate program developed and used for simulated and experiential learning at a large medical school in the southeastern u.s. cslc employs a half-adozen staff members and over one-hundred sps. staff members schedule and coordinate simulated interactions on behalf of teaching physicians to bring together undergraduate mss (in their first through fourth year of medical school) and sps for communication and diagnostic skills trainings. i have spent the last four years conducting fieldwork at the cslc as well as working as a sp, specifically one trained to complete the form i analyze. the computerized assessment form i analyze is used to prepare third-year mss for the usmle step 2 cs. sps are required to attend six-hours of training – three in patient portrayal and three in assessment form completion. prior to the simulated interactions, sps receive scripts to memorize, which are designated by a patient name, a sort of textual history taking, and a differential diagnosis. once sps arrive on-site, they are assigned clinical examination rooms. over the course of the day, each sp will see twelve students for no more than fifteen-minutes each and have ten-minutes to complete the computerized assessment form after each simulated interaction. the assessment form contains 37 multiple-choice items and 2 open-ended short answers, for a total of 39-items (appendix figure 1). through my analysis, i point to how the form authorizes persons to accomplish designated actions and regulates degrees of communication skills competency. analyzing the communication skills learning center step 2 cs practice exam assessment form designating tasks the sp post-encounter assessment is split into seven sections: building the doctor/patient relationship, reflective listening, connecting with the patient, communications reflection, history, physical, closure and conclusion to encounter, follow up and wrap up. the categories are organized in a chronological fashion, by what the ms should do from the beginning to end in the simulated interaction, which is similar to many popular communication skills models listed above. the categories themselves suggest distinct, unique, and separate phenomenon, which are distinguished in the tasks identified. first, who should accomplish the tasks? approximately 92% (36 of 39) of items follow a similar grammatical structure: beginning with the subject, the student and fitted with a verb or series of verbs (i.e., the student introduced...the student discussed...the student asked...). the only exceptions are item 32, which is formulated as, did the student...and the two open-ended items. that most items begin with the student implies a context where success is built on student action. notably, a student is not a practitioner, not a physician, not even a future physician, but one who is learning and has the capacity to improve based on the parameters issued in the text. the structure of each item suggests the capacity for successful commu [qualitative research in medicine & healthcare 2019; 3:8213] [page 79] article no nco mm er cia l u se on ly nication originates from the student because they are accountable for action. furthermore, even the two openended items explain open-ended items focus on the student: elaborate your reflections on the student and state and additional concerns you would like to share with the student. skilled communication is therefore a student-centered accomplishment. communication skills task types while the tasks identified in the form appear to be student-centered accomplishments, a closer analysis suggests otherwise. in creating a taxonomy of task types, i noted how each item requires the ms to act in a particular capacity. however, many items also suggest action on the part of the sp. therefore, i present the following task types (appendix table 1): (1) medical student objectbased tasks, (2) medical student assertion-based tasks, (3) medical student question-based tasks, (4) medical student and standardized patient body-based tasks, (5) medical student and standardized patient assertionbased tasks, (6) medical student and standardized patient question-based tasks, and (7) standardized patient-based tasks. medical student object-based tasks the first type of task involves the ms and objects: knocking on doors, sanitizing hands, and using a drape. although the ms does not need the sp to accomplish these tasks, their presence is what makes the task significant. for instance, knocking on a door is given meaning through the context of an exam room and further significance through a patient inside, one who perhaps responds to the knock. medical student assertion-based tasks secondly, mss should initiate utterances that: introduce themselves by name, identify their role, and inquire or explain the purpose of the visit. according to the form, it is the responsibility of the ms to accomplish these actions, they should not require a sp to prompt the statements. medical student question-based tasks third, mss should systematically ask questions about: a chief complaint, a history of smoking, a history of drinking, a history of drugs, what medications the patient takes, if the patient has any allergies, permission to start the physical exam, and if the patient has additional questions or concerns. again, per the form, these matters should be initiated by the medical student. medical student and standardized patient body-based tasks while 15 of the tasks should be initiated by the mss without prompting from a sp, 56% (22 of 39) tasks significantly rely on sp cooperation. for instance, the fourth type of activity identifies the sps body as a resource for task completion: maintaining good eye contact and body language, refraining from repeating painful maneuvers, listening to the heart, listening to the lungs, examining the abdomen, and examining extremities and performing reflexes. medical student and standardized patient assertion-based tasks the fifth and most common type of activity requires mss to make an utterance that implicates a sp’s response: correctly using the patient’s name, summarizing concerns, working with the patient to identify main concerns, acknowledging and demonstrating an understanding of feelings, taking personal responsibility where appropriate, valuing choices, behaviors, and decisions, validating and showing understanding for feelings and choices, offering support, requesting additional exams, discussing diagnostic options, providing a differential diagnosis, discussing their initial management plans, mentioning specific tests they’d like to do, and answering final questions or concerns. medical student and standardized patient question-based tasks in discerning between assertions and questions for activities that suggest only ms involvement, i notice two question-based tasks that explicitly involve both ms and sp: asking open ended questions and actively listening to responses, asking patients to list their concerns and listening to their concerns without interrupting them. standardized patient based-tasks the final type of activity the form designates occurs post factum. the form requests that sps elaborate on reflections of the student (from a patient’s perspective) and state any additional comments about the encounter. while these are the only two items that explicitly request the sps perspective, the variation between these two items highlights the complexity of the sp role: one who embodies the imagined patient, offers commentary on the simulated interaction, and accounts for how the assessment form is completed. based on the taxonomy of task types, the form explicitly directs sp action in approximately half (56%) of the designated tasks, either through referencing bodies, assertions they should make, or questions they should respond to. but arguably, sps are implicated in every one of the items. even medical student and object-based tasks, like the student knocked on the door before entering, are significant through the potential presence of a sp on the other side since just knocking on a door is an otherwise meaningless action. for medical student assertion-based tasks, a sp should be there to receive an introduction or to offer a chief complaint; and for medical student question-based tasks sps are required to account for whether the question was asked and are indirectly told to answer it. therefore, while the assessment form appears to direct [page 80] [qualitative research in medicine & healthcare 2019; 3:8213] article no nco mm er cia l u se on ly and regulate ms actions in simulated interactions, it also directs sps to act as particularly skilled patients and as institutional accountants who create a record of ms action. the role(s) of the standardized patient through completing the form, sps create a record of actions taken and assess medical students on a number of points. however, the form is imbued with instructive assumptions of best communication practices for which sp cooperation in both simulated interaction and assessment is taken for granted. the cscl assessment form regulates communication skills competency through five strategies (appendix table 2): (1) extended questions forms, (2) parenthetical sample statements, (3) qualified answers, (4) unqualified items, and (5) open-ended items. extended questions the first strategy for regulating communication skills competency is through extended questions, or sentences that qualify a communication skills task through further description, either in the sentence or parenthetically. for example, item 27 uses the extended question strategy to direct and regulate the role of the sp in the simulated interaction, which provides implications for ms and their future patients. the item, the student did not repeat painful maneuvers on you when you said it was painful?, suggests sps are responsible for making pain obvious to the ms during the physical exam and therefore, trains mss to anticipate particular performances of pain. item 9, the student summarized my concerns, often using my own words, qualifies how a summary should occur by often using my [the sp’s] own words. this item also directs sps to express concerns (and by proxy assumes future patients will express concerns in a summarizable fashion). notably, the qualifier in my own words suggests skilled students join in or align speech styles with the patient. as a conversation analyst, stivers48 explains how repeating another speaker’s utterances in the same or slightly different terms is a modified repeat, which in effect undermines the first speaker’s ownership of the claim and asserts the repeater’s rights to the claim. the form trains future physicians to use a reclaiming of speech, which strategically makes concerns a matter of medical practice. while several extended question forms use compound sentences to further qualify communicative actions, others use parenthetical statements. item 2 requires a ms to introduce themselves by their first and last name, not simply by their first name or by the role they are playing in the simulated interaction (i.e., i’m a member or the team or hi my name is grace). the most common extended question form that incorporates a parenthetical qualifier occurs for items in the physical exam section of the assessment form through the statement, (if applicable), which places analytic responsibility on the sp in determining whether a task is applicable to the case they are portraying. however, what constitutes applicable is not obvious in the assessment form and requiring the sp to draw on the script or other knowledge, which may or may not be institutionally based. in sum, extended provides sps guidelines for their actions and qualifications for completing the computerized assessment form. parenthetical sample statements rather than provide the sp information on the conditions of a task or how to complete the assessment form, parenthetical sample statements offer examples of ms talk that demonstrates task completion. for instance, item 7, the student asked an open-ended question and actively listened to the response without interrupting me, parenthetically provides sample statements as a resource for the sp’s assessment: (i.e., can you tell me about… i understand that you are saying… or what happens when…i see, so in other words). this detail focuses sp attention towards canned statements, which is a common feature of communication skills models, literature, and exam requirements. the use of parenthetical sample statements to explain communication skills tasks are used for abstract concepts like active listening, partnership, empathy, apologizing, and legitimization. the answer structure of such items occludes sp interpretation, assuming the sample statement automatically works and requiring the sp to simply report on whether it occurred. however, sps and future patients can and often do interpret such statements as insincere or uncaring.23,24,27 while the form portrays sample statements as coins mss can deposit into the conversational black box to achieve particular outcomes, creating an unquestioned if this then that communication equation, it ignores the interactional nature of medical consultations. furthermore, the parenthetical sample statements in item 7 are not attached to either open-ended asking or actively listening, which suggests the sp can accept the statements accomplish both tasks, regardless of whether they experienced feeling actively listened to. this acceptance is bound by the not done/done answer structure, which constitutes open-ended asking and active listening as joint-actions – two parts of the same action. the further irony of this item is that the medical student must talk for the sp to assess listening, leading to the functioning transaction: if students ask like this, patients will answer, active listening will occur, and in the end medical students will be skilled communicators. per the form, if the student uttered a statement like the ones listed, the sp can mark, done. however, if the utterance does not mirror the sample statements offered or if the actions are not done together, the only other option is not done. this item further relies on a black box assumption and overshadows interactional factors of talk. for instance, when patients provide extended accounts of their illnesses or experiences, physicians often perform continuers, which are verbalized tokens of acknowledgment like mhm, yeah, and right.49 such continuers could easily be [qualitative research in medicine & healthcare 2019; 3:8213] [page 81] article no nco mm er cia l u se on ly interpreted as interruptions, however such notions of communication are not embedded in the metadiscourse of the assessment form. qualified answer forms the final strategy for regulating communication skills competency through the assessment form is a qualified answer form. nearly 70% of all items (27 of 37) (appendix table 3) have two possible answers: not done or done. placing done as the second option insists the importance of student action, taking sp cooperation for granted in both (inter)actions and answers. the other 10 items similarly gloss sp cooperation, but further implicate sps by requiring them to judge medical student performances based on the qualifications described in answer options. these items have three or four options grounded in expectation – with not done (or not applicable to the case), below expectations, meets expectations, and above expectations as answer options. but whose expectations does the form account for? the patient portrayed, whose expectations may be written into the script and imagined by the sp? the sp’s, whose expectations are based on their training and experience? or the student’s expectations, based on what they’re taught? attending to the pronouns used in the form offer a path for discerning whose expectation the form refers to. the pronouns me, you, and our, as well as the noun patient are used throughout the document offering contradictory navigational turn-points for form completion. item 8, the student asked me to list my concerns and listened to the response without interrupting me, is the first item requiring sps to elaborate on degrees of communication competency through qualified answers. notably, it contains four, the most possible, degrees of accomplishment: (1) not done; (2) below expectations: infrequently: the student kept interrupting me while i was trying to answer and/or the student kept asking me questions without waiting for a response; (3) meets expectations: mostly: in general, the student asked me my concerns and listened to my response without interruptions; (4) above expectations: consistently: the student always asked me to respond do a prompt and waited for my response before moving on. in this answer, the student and me are the two agents described. the student asks for a list of concerns and does not interrupt the sp as they offer a response. but what if an actual patient has no concerns? a single concern? this item indicates a preference for the sp to offer a list of concerns and assumes future patients will do the same. this ambiguity highlights a key concern for the use of sps in medical education: standardization does not account for the skills actual patients may have in communicating with physicians. the possibility of a patient not having a concern, misunderstanding a physician’s question for concerns, or even offering tokens of acknowledgment in an extended account are ignored potential practices. in other words, students are trained by proficient patients and matters of expectation are not based on the patient’s expectation but are dependent on the sp’s ability to fulfil their institutional role. this becomes exceedingly concerning for items that measure psychological constructs. for example, item 11 states: empathy: the student acknowledged and demonstrated understanding of your feelings (i.e.: that sounds hard,...or, you look upset...) with the answer options: (1) not done; (2) below expectations: the student did not acknowledge my feelings very often infrequently, less than two times; (3) meets expectations: the student consistently acknowledged my feelings and verbalized this in empathy statements. the pronouns your and my are used interchangeably. to acknowledge your feelings suggests the medical student acknowledges the feelings of the portrayed patient. however, the answer items use the pronoun my when referring to feelings, suggesting the sp should use their own feelings to assess student communication competence. however, this pronominal switch does not distinguish the sps feelings from those of the portrayed patient. additionally, the parenthetical statements described (that sounds hard…or, you look upset) suggest the utterances will appeal to both parties. this ambiguity ignores the possibility that persons may experience empathy differently and that statements of empathy can be qualitatively different (although the answer types distinguish whether someone meets expectations based on the frequency of offering such statements (i.e., less than two times and consistently)). this item not only ignores the unique experiences of sps and future patients, but also the actual experience of mss, who in the context of a simulated interaction are not likely to empathetically engage with who they know is a fake patient, requiring more interactional work to inoculate them against sounding formulaic or insincere (pp. 26-27).23 this item demonstrates the dilemma of empathy in communication skills training, which decontextualizes emotions and empathy from the everyday experience of sps and mss and creates seemingly observable standards (canned sample statements) that do not work in actual medical practice for the sake of standardized assessable phenomenon. unqualified items while the strategies of extended questions, parenthetical sample statements, and qualified answers directs both ms and sp actions in simulated interactions as well as metadiscursively regulates communication skills competency, 14 out of 39 questions (36%) do so without providing additional descriptions. nonetheless, many of the [page 82] [qualitative research in medicine & healthcare 2019; 3:8213] article no nco mm er cia l u se on ly items are based in professional knowledge using terms like chief complaint, history, diagnostic impressions, and management plans in the question stems. such terms only begin to illustrate how professional knowledge is embedded in the communication skills discourse. open-ended items finally, the assessment form has two open-ended questions whose responses certainly merit their own study, but here i emphasize how the questions are structured. item 17 states, communications reflection: please elaborate your reflections on the student here, discuss what you would have preferred from the patient’s point of view. the use of you is once again notable, as it is used in contrast to two other agents: the student and the patient. this suggests that sps fulfill their institutional role by taking on the imaged perspective of the patient they are portraying. however, the perspective of a patient is just that, a perspective. within the context of multiple-choice, objective-based questions, such considerations might be seen as secondary. the item also requires the sp to take a critical and potentially negative stance towards a mss actions. taking a critical stance is challenging work. even in face-to-face interactions, criticism is considered a dispreferred response and is often hedged by claims like i think or i feel, which carry less epistemic weight.50 since sps complete a computerized assessment form, the use of the same interactional resources could further delegitimize their perspective in contrast to the professional knowledge laden, objective-structured questions that make up 95% of the form. item 39, the last item of the form states: general comments: please state any additional comments you would like to share with the student regarding their encounter with you. once again, the pronoun you is used, but here with only in context with the student. this suggests the student is the only recipient of the comments as well as provides sps a large degree of interpretive freedom: they can offer comments as a sp fulfilling their designated role, a sp’s non-institutional perspective, the imagined patient’s perspective, or even an amalgamation of the three. that the question is last emphasizes the preference for the previous and first listed closed-ended questions and suggests the previously mentioned items should be taken into consideration along with the short-answer response. in comparing the open-ended items to the other 37 items of the computerized assessment form, the contrast between professional knowledge and the perspectives of sps and imagined patients is stark. one is ordered, uniform, terminology-based, and through being multiplechoice suggests a sense of right or wrong. the other is a perspective – just a thought or observation. the semantic weight of the multiple-choice items reinforces the institutionalized version of communication skills over the version of competency described by sps or the imagined patients they portray. discussion the implications of assessment forms for communicative practice metadiscursively, the cscl assessment form emphasizes professional knowledge in sp practices.21 a shining example is item 10 asks sps to assess whether the student asked me questions in a systematic and efficient method, asking questions that were logical to follow. the item suggests ideal student questioning is systematic, efficient, and logical to follow, and infers an evaluator’s understanding of what is unsystematic, inefficient, and illogical. thus, a response to this item appears to be based in sp’s professional knowledge of history-taking. the candidate assessments create a three-point differentiation based on expectations: i) scattered and organized (and perhaps ‘smooth flow’); ii) inefficient, fairly efficient, or efficient; and iii) inaccurate, mostly accurate, or consistently accurate. the differentiation of the answers suggests should master the order, efficiency, and logic of questions together, requiring the sp to be an effective institutional accountant, able to distinguish degrees of ability, based on available resources. it is key to note that professional knowledge is in many ways antithetical to patient knowledge of medical interactions. this observation is true throughout the form as patient perspectives are often embedded in terms of professional knowledge. therefore, while sps are said to offer patient perspectives on a (simulated) medical interaction, they are in fact institutional puppets who by completing the form ventriloquize notions of authoritative communication skills discourse, even in open-ended questions.51 thus, by completing the form, sps i) create a record of designated student actions performed, which authorizes those actions as facets of communication skills; ii) assess along the continuum of communication skills offered in the form; and iii) proclaim the professional knowledge of communication skills under the guise of a patient perspective. in this, the assessment form not only regulates what the skilled ms should do but imposes institutional expectations of sps, mss, and by association patient skills and perspectives. in the following, i consider how the values of communication skills that are visible in the assessment form implicate sps, mss, and future patients. implications for standardized patients assessment forms strategically direct those who complete them, especially those required to as part of their job. the form suggests sps are co-operative performers and trained accountants. the form uses multiple strategies to ensure sps perform and assess an institutionalized version of communication, including extended questions, parenthetical sample statements, [qualitative research in medicine & healthcare 2019; 3:8213] [page 83] article no nco mm er cia l u se on ly qualified answers, and shifting pronouns. convoluted items that assess multiple communication tasks (i.e., open-asking and reflective listening) provide for greater inaccuracies of the tasks measured. additionally, many items refer to highly abstract concepts, like whether one feels heard or respected. the question and answer structure delegitimizes sp perspectives in open-ended items, whether comments are offered through their own experiences or imagined on behalf of a portrayed patient. moreover, the institutionalized version of emotional preferences (i.e., empathy and listening) and canned utterances (i.e., in parenthetical sample statements) prevails through the structure of the assessment. by extension, sps are limited in their unique portrayal of patients and assessment of students from a noninstitutional perspective. furthermore, that the form is completed by sps after the interaction and mss don’t view them until long after the encounter indicates the form reminds sps what to do and how, not only mss. again, 56% of items rely on an sp to be present, speak, or act. acting outside of the parameters is consequential – leading to the possibilities of cscl intervention or even sp termination. in this, the form regulates action and consistently reminds sps what needs to happen and who needs to do it. implications for medical students for mss, the assessment form serves as a structure of practice. each item emphasizes ms action (the student [verb]) in a particular order (moving from the opening to closing of a medical consultation). however, the student-centered structure of the form conceals how sps are proficient in the professional knowledge of communication skills in medical education and ignores the role that patients actually play in medical interactions.52 first, medical students are trained to be competent communicators by interacting with institutionally-trained sps who have specific knowledge of the assessment form and the professional knowledge it contains (i.e., whether one’s history is organized). furthermore, sps are limited in their portrayal by the scripts they are issued and the forms they must complete, overshadowing the particularities of patient experience and ability for an institutionalized account of patienthood. finally, the assessment form instructs medical students to engage in strategies that enact professional authority in an interaction.53 asking questions in an organized and systematic manner moves the encounter forward according to the provider’s expectations.52 modified repeats strategically recontextualize a patient's words under the puview of medical treatment. the irony in teaching these strategies through sp assessment forms is that they suggest these are patient preferences, or a form of patient-centered communication. conclusions in sum, the assessment form is designed to evaluate student’s communication competency, but communication competency cannot exist outside of cscl’s logic of practice. the form designates the tasks that mss and sps should accomplish. in designating actions, the form authorizes particular activities, while deauthorizing those not specified. the form regulates a closed-system, which does not account for sp’s noninstitutional perspectives, the nuances of ms styles, or the uniqueness of patient experience, in effect decontextualizing communication from an everyday, culturally imbued activity. instead, communication becomes a professional technology – a tool to accomplish a goal and a method for assessing competence. what is ultimately at risk in this practice is the humanity of sps, mss, and especially their patients. while future studies should attend to the broader experience of standardized patient practice – including how sp cases are written to capture unique patient features, assessment forms are taken up in simulated interactions, as well as how the criteria laid out in them are negotiated by sps – the findings of this analysis suggest a need to develop more practical tools for training medical students in communication. furthermore, the rate of physician burn-out and even ms suicide are on the rise, which opens the potential for invoking communication as the universal activity for not only interacting with patients, but with colleagues, and in medical students sensemaking activities as part of professional practice.54 i echo the suggestions of interactional scholars, that more efforts should be spent developing a robust vocabulary for students to move forward through personal reflexivity rather than traditional communication skills models which emphasize a student-centered checklist of action. current paradigms of patient-centered communication skills in sp practices are limited by notions of individual action, abstract emotions, and taken-for-granted notions of patient skills and experiences. even the more recent shift towards relationship-centered communication skills55 that suggest the importance of empathy and affect in patient-provider interaction struggle to offer concrete tools for ms and physicians to reflexively consider their own role in healthcare interactions. assessment forms are a key site for designating, authorizing, and regulating professional knowledge and offer key sites for developing protocols that allow ms to advance their reflexive capacities. discourse analysts, in particular, can offer robust metatheoretical approaches to developing sp practices, cases, and forms that allow for noninstitutional perspectives and capture particularity. furthermore, discourse analysts can play a key role in developing curricula that are not flat descriptions and tools removed from interactional practices. in each of these opportunities, i echo that the ways we talk about talk is 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25. gumperz j. discourse strategies. cambridge: cambridge university press; 1982. 26. roberts c, wass v, jones r, et al. a discourse analysis of ‘good’ and ‘poor’ communication in an osce: a proposed new framework for teaching students. med educ 2003;37:192-202. 27. atkins s. assessing health professionals’ communication through role-play: an interactional analysis of simulated versus actual general practice consultations. discourse stud 2019;21:109-34. 28. de la croix a, skelton j. the reality of role-play: interruptions and amount of talk in simulated consultations. med educ 2009;43:695-703. 29. seale c, butler cc, hutchby i, et al. negotiating frame ambiguity: a study of simulated encounters in medical education. commun med 2007;4:177-87. 30. de la croix a, skelton j. the simulation game: an analysis of interactions between students and simulated patients. med educ 2013;47:49-58. 31. tracy k. discourse analysis in communication. in: scriffin d, tannen d, hamilton he, eds. the handbook of discourse analysis. 2nd ed. malden, ma, usa: blackwell publishers; 2015. pp 725-749. 32. bartesaghi m, castor t. tracing our steps through communication social construction: six propositions for how to go on. in: galanes g, leeds-hurwitz w, eds. socially constructing communication. mahwah, nj: hampton press; 2009. pp 225-243. 33. barad k. posthumanist performativity: toward an understanding of how matter comes to matter. signs: j women culture society 2003;28:801-31. 34. iedema r. discourse studies in the 21st century: a response to mats alvesson and dan kärreman’s “decolonializing discourse.” hum relat 2011;64:1163-76. 35. tracy k, mirivel jc. discourse analysis: the practice and practical value of taping, transcribing, and analyzing. in: frey l, cissna k, eds. handbook of applied communication. mahwah, nj: lawrence erlbaum associates; 2009. pp 153-178. 36. jones rh. spoken discourse. london: bloomsbury academic; 2016. 37. kuhn t, ashcraft kl, cooren f. the work of 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[page 86] [qualitative research in medicine & healthcare 2019; 3:8213] article no nco mm er cia l u se on ly layout 1 introduction in 2017, the department of health and human services (dhhs)1 declared the opioid epidemic a public health emergency. between 1999 and 2010, the trend of opioid overdoes death rates increased in line with opioid sales.2 furthermore, the percent change in distribution rose as high as 500% for hydrocodone, 1300% for methadone, and 1000% for oxycodone in some states.2 in the same period, the age-adjusted mortality rate for opioid-related overdoses nearly quadrupled.3 the current epidemic is not the first-time health professionals have searched for ways to combat opioid use disorder. in the mid-to-late nineteenth century, opioid addiction soared as distribution of opium and morphine increased.4 the contributing factors of the epidemic were multifaceted: the introduction of the hypodermic needle, poor understanding of pain and its etiology, and loose regulations on the sale of morphine. similarly, the approach to address the epidemic was multifaceted: development of alternative pain medication, stricter prescription laws, and prescriber education.4 fast forward to the current opioid epidemic and the discussion looks fairly similar. contributing factors to the opioid epidemic are multifaceted. king and colleagues5 identified key determinants at three levels: prescriber behavior, user behavior and characteristics, and environmental and systemic determinants. among prescriber behavior, increases in opioid prescriptions, dosages, and prescriptions for methadone and oxycodone were identified as key contributing factors. among user behavior and characteristics, sociodemographic characteristics and polydrug toxicity were identified as key contributing factors. there has also been discussion around the role of the fifth vital sign in the current epidemic. in the 1990s, the american pain society launched its campaign pain, the fifth vital sign to increase physician attention to assessment and management of chronic pain in patients which was often overlooked.6 the campaign was later adopted by the joint commission on the accreditation of healthcare organizations (jcaho) who mandated pain assessment and treatment in accredited health care facilities. while the intent of the campaign was not to increase the use of opioids to address pain, campbell7 noted that the emphasis on objective pain ratings may have led to an overemphasis on lowering pain ratings with opioids. in 2017, dhhs launched its 5-point strategy to combat the opioid crisis. the strategic framework focuses on improving addiction prevention, treatment, and recovery services; data reporting and collection; pain management care and practice; availability and distribution of overaddressing the opioid epidemic: recommended solutions from physicians jessica cataldo,1 sandra collins,1 richard mckinnies,2 jane nichols,3 thomas shaw1 1health care management program, school of health sciences; 2radiological sciences program, school of health sciences; 3rehabilitation counseling and administration program, rehabilitation institute, southern illinois university, carbondale, il, usa abstract the purpose of this study was to assess physicians’ accounts related to the current opioid epidemic and to identify solutions that they feel would be most successful in addressing opioid misuse and overuse. a survey was administered a group of physicians obtained from a nationwide database. nearly all physicians surveyed believed there was a current opioid crisis in the united states and that physicians should take an active role in addressing opioid use in patients. four key themes emerged regarding solutions to the opioid crisis: i) policy change, ii) improve treatment, iii) education, and iv) alternative treatment. the diversity of responses highlighted the need for a multifaceted approach to address opioid misuse and abuse. correspondence: jessica cataldo, 1health care management program, school of health sciences, carbondale, mailcode 6615, il 62901, usa tel.: 618-453-4803. fax: 618-453-7020. e-mail: jessica.cataldo@siu.edu key words: opioids; opioid misuse; physician perspective. conflict of interest: the authors declare no potential conflicts of interests. received for publication: 11 october 2019. accepted for publication: 17 april 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:22-30 doi:10.4081/qrmh.2020.8619 [page 22] [qualitative research in medicine & healthcare 2020; 4:8619] qualitative research in medicine & healthcare 2020; volume 4:22-30 no nco mm er cia l u se on ly dose-reversing drugs; and research. the framework builds upon previous initiatives and adds new initiatives focused on prevention and treatment. prescription monitoring programs (pmps) are one example of a previous initiative incorporated into the dhhs’ plan. the first pmp dates back to 1918, when new york state required the use of official prescription forms for heroin, cocaine, morphine, opium, and codeine, which were then sent to the health department by the pharmacy.8 today, all 50 states and the district of columbia have an operational pmp within their borders; however, missouri does not have a statewide system and 21 states do not have mandatory enrollment for prescribers or pharmacists.9 in the present study, we are most interested in the accounts of physicians of the current opioid epidemic and the solutions that they felt would be most successful in addressing the epidemic. physicians play a key role in addressing the opioid epidemic as key prescribers of opioids. dunn and colleagues10 identified a potential role for physicians in addressing opioid misuse through careful monitoring and oversight of patients when opioids are prescribed. furthermore, schnell and currie11 found physicians who completed their initial training at top medical schools prescribed significantly fewer opioids than physicians who completed their training at lower-ranked medical schools. the authors concluded that physician education may be a critical component in addressing the opioid epidemic. additionally, physicians’ attitudes and beliefs toward pain management and opioid use ultimately influence how they practice medicine.12 thus, we found it important to understand the views of physicians in developing a successful plan to address opioids because without their support, efforts are likely fall short. furthermore, physicians’ perspectives provide a complimentary view of addressing the opioid epidemic to the public health approach outlined by dhss, as medicine tends to be more individualized in its focus. this study allows for comparison in dhss’ strategy to physicians’ solutions regarding the opioid epidemic. a handful of studies have examined physician perspectives around opioid use and misuse, however, these studies tend to focus on either one specialty area or one state. for example, kennedy-hendricks and colleagues13 found that high-volume opioid prescribers were less likely to support policies aimed to reduce prescription opioid use; however, the study was limited to primary care physicians. wolfert and colleauges14 found that physicians were more likely to view opioids as an acceptable medical practice for chronic cancer pain but less so for pain not related to cancer; however, the study was limited to physicians in wisconsin. we aim to assess physicians’ accounts related to the current opioid epidemic across states and specialty areas to capture multiple perspectives across disciplines or geographic regions and to identify differences that emerge. additionally, most studies were purely quantitative in focus, limiting responses to predetermined options. we use a mixed method approach to our survey design to elicit more descriptive data from physicians, particularly around potential solutions to the opioid crisis. materials and methods survey design we collected empirical data related to additional solutions physicians felt would be successful in addressing the opioid epidemic via an email survey of physicians across the united states. this data was part of a larger study on accounts of medical marijuana as a replacement for opioids. the total survey instrument included 4 questions related to the current opioid epidemic, 10 questions related to medical marijuana as a replacement for opioids, and 12 demographic questions. the questions related to the current opioid epidemic asked respondents to indicate on a 3-point scale (yes, undecided, no) whether they believed there was a current opioid crisis in the united states and if they believed that physicians should take an active role in addressing opioid usage. respondents were also asked to indicate their level of agreement on a 5-point likert scale with four opioid solutions frequently cited in the literature: i) opioid prescribing practices, ii) expanded use and distribution of naloxone, iii) expanded medication-assisted treatment (mat), and iv) creation of a national prescription database. lastly, respondents were asked to identify additional solutions they felt would be successful in addressing the opioid epidemic in an openended format. demographic questions asked respondents to indicate the state they primary practiced in, years they have practiced medicine, whether they were board certified, areas of board certification, size of community, size of practice, professional memberships, hours of direct patient care during a typical week, age, gender, race, and ethnicity. we developed the survey instrument following a thorough literature review and weekly meetings. prior to its administration, we tested the survey instrument for clarity, readability, and face validity with a panel of physicians not included in the sampling frame. the survey protocol was approved by the human subjects committee at southern illinois university. participants and procedures the sampling frame was obtained from a nationwide database company and included a total of 11,939 physicians. we included physicians in family practice, general practice, medical oncology, psychiatry, radiation oncology, pain management, and pain medicine across the united states with all states represented. the survey was sent to physicians via email and was completed using survey monkey. the survey was fielded for two weeks. after two weeks, a second survey request was emailed to nonrespondents. [qualitative research in medicine & healthcare 2020; 4:8619] [page 23] article no nco mm er cia l u se on ly data analysis solutions to the opioid crisis were analyzed using inductive thematic analysis utilizing a realist ontology.15 we aimed to report the accounts and reality of respondents rather than interpret the meaning of responses. two researchers categorized responses into initial codes independently. codes were developed based on semantic coding and aimed to summarize the meaning or content of responses. the two coding lists were then compared and utilized to condense codes into key themes through a process of abstraction and clarification. fifteen initial themes were identified. through discussions, these fifteen themes were condensed down to four themes plus an other category for responses that did not fit well into the identified themes. the remaining researchers validated the identified themes. closed-ended survey data were analyzed using spss (version 25, spss inc., usa). frequency counts and descriptive statistics were calculated for all quantitative survey questions. we included some basic quantitative data for context, however, the focus of the data analysis in this study is on the qualitative data surrounding solutions to the opioid crisis. results after accounting for undeliverable instruments, a total of 11,483 surveys were delivered successful. the survey yielded 164 total responses for a response rate of approximately 1.4%. as respondents did not always answer every question on the survey, the total participant number (n) varied slightly question to question. fifty-five percent of respondents (n= 152) were male, with an average age of 57.3 years (n= 141; s= 10.9). most respondents were white (83%; n=148) and non-hispanic (93.7%; n= 142). the four regions of the united states were represented fairly equally in the study. of the 145 physicians who responded on their location, 46 (32%) were from the western region, 44 (30%) were from the midwest region, 26 (18%) were from the southern region, and 26 (18%) were from the northeast region. eightynine percent of respondents (n= 148) were board certified, with roughly half of those board certified in family medicine (n= 91). respondents (n= 137) practiced medicine for an average of 26.1 years (s = 10.8) and provided an average of 25.7 hours of direct patient care each week (n= 161; s= 17.8). over half of respondents (n= 145) worked in practices with 5 or fewer physicians. table 1 provides an overview of respondent characteristics. eighty-eight percent of respondents (n= 162) stated that they felt there was an opioid crisis in the united states, and nearly 99% (n=161) believed that physicians should take an active role in addressing opioid use in patients. respondents indicated high agreement for all four solutions, with nearly 87% indicating agreement with opioid prescribing practices, 75% for naloxone, 88% for expanded mat, and 81% for a national prescription database. figure 1 shows the breakdown of responses for each solution. eighty-nine total open-ended responses were received regarding additional solutions that respondents felt would be successful in addressing the opioid epidemic. we identified four key themes from these responses: i) policy changes, ii) improve treatment for opioid misuse, iii) education, and iv) alternative treatments for pain. within each of these key themes, we identified several subthemes. [page 24] [qualitative research in medicine & healthcare 2020; 4:8619] article table 1. respondent characteristics. sex, n (%) question response rate (n) male, 90 (55.2) female, 52 (31.9) 93% (152)* age range, years, n (%) 30-39, 8, (5.7) 40-49, 26 (18.6) 50-59, 45 (32.1) 87% (141)* 60-69, 47 (33.6) ≥70, 14 (10) race, n (%) white, 123 (83.1) black, 3 (2) asian, 12 (8.1) 91% (148)* american indian/alaskan native, 2 (1.4) other, 8 (5.4) ethnicity, n (%) hispanic, latino, or spanish origin, 9 (6.3) not hispanic, latino, or spanish origin, 133 (93.7) 87% (142) board certified, n (%) yes, 131 (89.1) no, 16 (10.9) 91% (148) area of board certification, n (%) family medicine, 91 (54.5) general practice, 2 (1.2) internal medicine, 5 (3.0) medical oncology, 5 (3.0) 90% (147) psychiatry, 20 (12.0) radiation oncology, 1 (0.6) pain medicine, 7 (4.2) other, 36 (21.6) years of practice, n (%) 0-9, 9 (6.3) 10-19, 34 (23.9) 20-29, 46 (32.4) 87% (142) 30-39, 40 (28.2) ≥40, 13 (9.2) size of practice, n (%) solo, 41 (28.5) 2-5 physicians, 44 (30.6) 6-10 physicians, 15 (10.4) 11-30 physicians, 22 (15.3) 89% (145) 31-100 physicians, 10 (6.9) more than 100 physicians, 12 (8.3) percentages may not add to 100 due to rounding; *one or more na response. no nco mm er cia l u se on ly theme 1 policy changes policy changes were the most frequently cited solutions for the opioid crisis, accounting for 22 total responses. however, the types of policy changes recommended spanned four key areas: third-party payers, prescribing limits, criminalization, and prescription monitoring databases. third-party payers nine respondents recommended policy changes surrounding third-party payers. three respondents noted changes in reimbursement toward a value-based model would provide the time necessary to adequately treat pain and addiction issues. one respondent commented: most important: pay pcps [primary care physicians] for valuebased care, not time. we can’t solve this problem in a 15minute visit. another respondent suggested significantly reducing reimbursement to pill mills. four respondents stated increased reimbursement for alternative pain therapies and mental health services for opioid addiction as a key policy change. one respondent recommended mandating third-party payers to cover tamper resistant formulations of opioids, which are designed to make drugs harder to crush, snort, or inject. prescribing limits respondents were split on the usefulness of prescribing limits in addressing the opioid epidemic. four respondents pointed to prescribing limits as a positive solution. one respondent noted: actually, limiting the ability of physicians to prescribe would greatly help. or having more specific guidelines on how many to prescribe given the situation, similar to duration of abx [antibiotics] for a given infection. another respondent stated: stop prescribing opioidsthey have no place in pain management for greater than 1 week. two respondents felt that prescribing limits would unnecessarily punish responsible patients and providers, and may negatively affect special populations such as those with cancer pain or sickle cell disease. finally, one respondent did not point to prescribing limits rather to the way in which prescriptions are completed, suggesting, electronic prescribing of controlled substances with a requirement that each provider have the ability to self-audit prescribing patterns. criminalization five respondents believed increased criminalization for drug dealers would help address the opioid epidemic. one respondent suggested a focus on illegal importation, stating: eliminate and publicize the illegal importation and smuggling of opioids, especially fentanyl from china. another respondent felt pharmaceutical companies should be held accountable for creating the current crisis and continuing to profit from it. similarly, one respondent believed the drug enforcement agency (dea) should be allowed to investigate drug distribution companies, stating …much of the ‘leaking out’ of prescription opiates is from this system gone awry. there are way too many prescription drugs sitting in warehouses …that is strongly correlated to this problem. a fourth respondent believed those addicted to opioids should be arrested and allowed to dry. however, one respondent felt that the current opioid epi [qualitative research in medicine & healthcare 2020; 4:8619] [page 25] article figure 1. level of agreement with four opioid epidemic solutions. percentages may not add to 100 due to rounding. no nco mm er cia l u se on ly demic is partly due to over-criminalization, stating: we need to decriminalize opioid and marijuana use, make these drugs prescription and not scheduled, provide appropriate treatment for patients with abuse disorders and education physicians regarding proper use, just as for any prescription medication. prescription monitoring database two respondents recommended mandatory participation in prescription monitoring programs among prescribers. one respondent pointed to the need for a national program, stating: address the synthetic opiates that are coming across the border. they are too smart for a wall. the other respondent highlighted the need to expand the use of prescription monitoring: require the va and methadone programs to contribute to rx [prescription] monitoring programs. have an indication in rx monitoring programs of ed visits for opioid od [overdose]/abuse. while not a solution, a third respondent noted a unique challenge associated with prescription monitoring databases, stating: i work in pediatrics and know the parents are “using” but do not have access to their physician drug monitoring program as they are not my patientidentifying a solution here would be helpful. theme 2 education the second most common response related to education for physicians and patients, accounting for 18 total responses. responses were broken into two categories: physician education and patient education. physician education eleven respondents recommended increased education for opioid prescribers. recommended length ranged from a minimum of a 3-hour continuing medical education (cme) course to a minimum of an 8-hour cme course. one respondent suggested: physician education to discourage high-volume open-ended prescribing. sponsorship of such cme courses was also addressed, noting that pharmaceutical companies should not be allowed to provide cme courses related to opioid prescribing. medical board intervention for overprescribing providers was also suggested. two respondents also highlighted a need for physician education on alternative treatments for pain management and dependence disorders. patient education seven respondents noted patient education as a potential solution to the opioid epidemic. three respondents specifically noted that patients need to be educated that pain cannot be completely eliminated and that some pain should be tolerable. one respondent noted: health system not focusing on patient satisfaction because they are not satisfied if their pain is not gone; patient education that we cannot eliminate pain completely. two respondents recommended a national campaign on the dangers of overusing opioids and obtaining opioids on the streets. one respondent recommended early discussions around opioids by introducing education in schools. theme 3 improve treatment for opioid misuse the need for improved treatment to address opioid misuse and abuse was the third most cited solution for the opioid epidemic, accounting for 13 total responses. respondents addressed three areas for improved treatment: medication assisted treatment (mat) and other treatment programs, mental health, and screening. medication assisted treatment and other treatment programs three respondents specifically identified increased access to mat as a recommended solution, while five respondents referred generally to treatment programs. one respondent stated: make mat as easy as opioids to prescribe. however, another respondent cautioned, mat with buprenorphine needs to be in monitored format. we don’t need suboxone prescribing which can be quite lucrative to some physicians [and] become the next pill mills. one respondent noted barriers to mat need to be removed, such as preauthorization requirements or the need for specialty pharmacies. another respondent highlighted mat with medications other than buprenorphine, such as vivitrol and suboxone, to improve patient functionality and long-term success. two respondents specifically noted non-mat treatment as key focuses, including intensive outpatient programs and 12 step programs. one respondent recommended more funding for opioid addiction treatment programs. mental health four respondents noted the importance of mental health care in addressing the opioid epidemic, including counseling and other mental health interventions for those experiencing opioid addiction. the recommended solutions around mental health were generally broad, with two respondents simply stating, treat mental illness. a third respondent recommended increased reimbursement for wrap-around programs that include mental health treatment and life skills training, while a fourth respondent suggested: improve access to and affordability of dual diagnosis treatment including group homes. screening three respondents highlighted the need for improved screening to determine patients at high risk for opioid addiction. one respondent specifically identified screening, brief intervention, and referral to treatment (sbirt) to identify patients with opioid addiction, while another re[page 26] [qualitative research in medicine & healthcare 2020; 4:8619] article no nco mm er cia l u se on ly spondent noted the need for a standard screening questionnaire and informed consent regarding the risks and disadvantages of opioid use. theme 4 alternative treatment the fourth most common response related to alternative treatments to address pain, accounting for 12 total responses. respondents noted three types of alternative treatments for pain: alternative medications to opioids, non-pharmaceutical options, and medical marijuana. alternative medications five respondents felt that alternatives to opioids should be focused on to address pain. one respondent felt other options were available from pharmaceutical companies, stating: find different drugs by pharmaceutical company [that are] not addicting; i am sure pharmaceutical companies [are] hiding solutions. another respondent noted that buprenorphine was a safer alternative with less risk of dependency and overdose than other opioids. funding was also highlighted, where one respondent noted: seriously fund and investigate other modalities for treating chronic pain such as a safer, cox-2 drug and deep penetrating laser. non-pharmaceutical options four respondents highlighted non-pharmaceutical pain treatments as potential solutions to the opioid epidemic, including acupuncture and hypnosis. one respondent noted the need to address all patients holistically in pain management. medical marijuana three respondents identified medical marijuana as a potential treatment option in pain management. one respondent suggested: medical marijuana as [an] adjunctive therapy. another respondent identified cannabidiol as an alternative treatment option. other responses seven responses did not fit well into the four themes identified. two respondents did not feel as though any significant measures should be taken to address the opioid epidemic, with one respondent noting: i think public health money should be applied to reduce other preventable causes of deathsuicide, guns, and motor vehicles. the “opioid crisis” strikes me as a politcomedia construct; and the other respondent stating: survival of the fittest; let recreational drug users destroy themselves. no restrictions on terminal patients. two respondents felt that physicians need autonomy to treat patients and that government efforts to address the issue are largely ineffective. one respondent noted: get the government out of medicine. the “pain” fifth vital sign, joint commission, state and federal governments have largely created the current issue… let physicians treat patients as appropriate. punish the few who violate the law and do not continually control people, physicians [or] patients. another respondent stated, opioid abuse is a psychosocial issue. the solutions introduced by federal and state governments are only short-term solutions to this problem. the government has decreased prescriptions of opioids and deaths from heroin, [but] fentanyl er have increased. this is a medical problem, not an issue that lawyers will be able to solve. we need a completely different approach. one respondent simply noted that there are no easy solutions to the opioid crisis, while another respondent felt the burden should shift from primary care to pain and mental health specialists. a third respondent noted, monitor pain management physicians more closely. discussion while most physicians felt there was an opioid crisis in the united states and that physicians should play an active role in addressing the opioid use, no clear consensus emerged on specific solutions to the opioid epidemic. this may reflect physicians’ understanding that the opioid epidemic is multifaceted with several contributing factors and no single solution is likely to be successful alone. it may also reflect physicians’ personal experiences treating patients with pain and opioid addiction. in this discussion, we highlight the similarities and dissimilarities between physicians’ responses and the dhss’ 5-point strategy to combat opioid abuse, misuse, and overdose. policy changes were most cited with several recommendations made to change reimbursement strategies, including a shift to value-based payment models and increased reimbursement for alternative therapies for pain. while value-based payment models are not explicitly addressed in dhss’ 5-point strategy, reimbursement is addressed through the testing of new payment models that incentivize care coordination as well as a waiver demonstration program that allows for medicaid reimbursement for inpatient and residential addiction treatment. additionally, payment policies and incentives around the appropriate use of opioids and non-opioid pain treatments are also outlined by dhss. shifts to value-based reimbursement, as noted by physicians, aligns with changes occurring throughout the healthcare system. value-based purchasing may provide a better environment for addressing pain than the traditional fee-for-service model and address concerns raised in the survey regarding inadequate time to treat patient’s pain. this will also require physicians to examine their quality metrics around pain and/or opioid use. for performance year 2018, there are nine quality measures related to pain and three quality measures related to opioid use.16 [qualitative research in medicine & healthcare 2020; 4:8619] [page 27] article no nco mm er cia l u se on ly there has been some movement toward increased access to alternative therapies for pain. the u.s. pain federation17 noted that several states have passed or introduced legislation to increase assess to alternative or complementary treatment options for patients with chronic pain under state medicaid programs. within dhss’ 5-point strategy, the veteran pain management research collaborative is supporting greater research related to alternative treatments for pain management, including yoga, massage, and cognitive behavioral therapy. roughly 87% of respondents felt that opioid prescribing practices would reduce opioid use disorders and overdose. in open-ended responses, a few physicians voiced concerns that overly restrictive regulations would negatively affect patients who benefit from the safe use of opioids. dhss’ 5-point strategy emphasizes the use of evidence-based guidelines for both opioid and non-opioid treatments, a focus consistent with evidence-based medicine broadly. several opioid prescribing and treatment guidelines currently exist.18-20 furthermore, bohnert, guy, and losby21 found that opioid prescriptions decreased after the release of the cdc’s 2016 guideline for prescribing opioids for chronic pain. from an applied perspective, healthcare organizations also adopt their own policies regarding opioid prescription practices. physicians who felt overly restricted may be working in organizations that have adopted stricter policies. criminalization is not addressed in dhss’ 5-point strategy, however, efforts to collaborate with law enforcement, jails, and other community settings are addressed. for example, under the comprehensive addiction and recovery act, grants were provided to local communities to provide training, medication, and treatment referrals for emergency treatment of opioid overdose. dhss’ strategy focuses more on law enforcement as an intervention point, while responses received around criminalization generally pointed to harsher punishments for opioid abuse. it is important to note that only a handful of respondents felt that criminalization was a potential solution, which may reflect personal beliefs and experiences. physician and patient education is included in dhss’ 5-point strategy, particularly patient education. this theme appears to be in the greatest alignment between physicians’ responses and the 5-point strategy. dhss’ plan for patients include science-based public education campaigns around substance use disorders and associated stigma, the use of social and digital media to disperse education, increased schooland community-based prevention programs to prevent opioid misuse, and engagement of faith-based organizations in education efforts. physician training and education efforts include the development and implementation of a training program in collaboration with professional organizations and education on drug-drug interactions between opioids and other medications. from an applied perspective, ensuring that education efforts are effectively disseminated is particularly important. efforts in developing training programs with professional organizations must be effectively shared with physicians in those professional organizations in a format that is widely adopted and utilized. responses received from physicians regarding mat also aligned closely with efforts outlined in dhss’ 5point strategy. mat is widely discussed in the dhss’ plan, including the creation and dissemination of best practices related to mat and companion psychosocial treatments. this focus would be beneficial as some physicians voiced concerns around the variability in mat and the potential for mat to become problematic itself. training on evidence-based practices for mat is also addressed in dhss’ plan to ensure appropriate adoption and implementation of mat services. additionally, dhss’ 5point strategy addresses barriers to mat, such innovative services delivery models and working with payers to reduce coverage limitations, a concern specifically noted by one respondent. physicians’ responses recognized the need for mental health treatment but were not specific in what types of mental health strategies would be most beneficial to address opioid use and misuse. it may be possible that physicians are unsure of mental health strategies that would be most beneficial, which would point to an additional training need for physicians. dhss’ 5-point strategy does recognize the need for mental and behavioral health treatment to address the issue, including training for behavioral health providers on substance use disorders and the use of multidisciplinary team models for pain management. providing physicians with practical approaches to implementing multidisciplinary team models that include mental or behavioral health may be beneficial, particularly for physicians who do not have mental health providers working directly in their practices. innovative payment models, like those that incentivize care coordination among these teams, would likely increase the adoption of such models. while only mentioned twice, screening tools to assess potential for risk of opioid dependence may provide physicians with an additional tool in determining the best possible treatment plan for patients with pain issues. previous research indicates that screening for previous or current illicit drug and alcohol misuse may provide the best indicators.22-24 dhss’ 5-point strategy includes the development of guidelines for screening on co-occurring mental health and substance use disorders as well as unresolved trauma in people living with chronic pain. such guidelines would again require effective training and dissemination for widespread adoption. additionally, physicians, particularly primary care physicians, need to have adequate resources to refer patients who are identified through such screenings. for communities that lack adequate providers and resources for those with substance use disorders, screening efforts will likely feel inadequate, which may be why it was not mentioned frequently by physicians. [page 28] [qualitative research in medicine & healthcare 2020; 4:8619] article no nco mm er cia l u se on ly finally, alternative treatments are addressed in dhss’ plan, however, are somewhat vague in the specific strategies outlined. for example, non-opioid approaches are mentioned several times, which could mean alternative medications to opioids as well as non-pharmaceutical approaches. based on physician responses, both would be beneficial to better address pain issues among patients. dhss has invested in the development of non-pharmacologic, non-opioid and/or non-addictive pain therapeutics, as well as novel opioid antagonists to combat synthetic opioids. such research efforts align with physicians’ call for new approaches to pain management. medical marijuana is not addressed in dhss’ 5-point strategy due to its classification as a schedule i drug under federal law. however, many states have moved forward with allowing the use of medical marijuana for chronic pain patients. the inability to include medical marijuana in data tracking and research efforts in dhss’ plan is a significant gap with efforts being employed at the local level. conclusions this study provides a snapshot of physician views on the opioid epidemic and its potential solutions. while no clear consensus emerged among physicians on solutions to the current opioid crisis, there were many areas that aligned with the dhss’ 5-point strategy to opioid use, misuse, and abuse. this is promising given the coordinated efforts and significant investment that occurs with the implementation of the dhss plan. training and dissemination efforts from dhss down to local physicians will be key in addressing the concerns noted by physicians on the survey. while many of the solutions noted by physicians are currently included in the dhss’ 5-point strategy, it is possible that local physicians are not yet noticing changes of these efforts. the study involved a relatively small sample size with a low response rate to the overall survey. additionally, respondents who participated may be those who felt strongly about the opioid epidemic and the use of medical marijuana responded but those with more neutral responses decided not to respond. although the survey was anonymous, social desirability bias may have led some respondents to answer in a way they perceived to be more socially acceptable. additionally, respondents did not always answer every question, which increases the issue of item nonresponse in the findings. lastly, the classification of open-ended responses into key themes was limited to the researchers’ understanding of respondents’ answers. using interviews or focus groups to gain better understanding of these responses would strengthen the findings. future research may benefit from expanding the survey to a larger group of prescribers, such as nonphysician practitioners and dentists, may provide better insights into potential solutions and their buy-in from the medical community. very few specialists responded to the initial survey, thus expanding the survey to specific specialists who frequently serve patients with pain may also provide better insights. both of these steps would allow for a comparison in specific subgroups to identify any potential conflicts or differences. it would also be beneficial to closely examine the implementation of these strategies at an organizational and state level to identify the successful strategies as well as physician pushback. for example, state or organizational policies may dictate specific cme requirements or prescribing limits. examining the effectiveness of such approaches as well as provider buy-in may provide beneficial insights to curb the opioid trends. the opioid epidemic is both a public health issue and a medical issue. as such, examining the intersection of the public health response and medical response is necessary to implement a successful, comprehensive response strategy. our findings show several overlaps between dhss’ 5-point strategy and physicians’ accounts, which is a positive sign for efforts in curbing the opioid epidemic. there were, however, areas identified by physicians that are not clearly outlined in the 5-point strategy, and vice versa, that may point to areas where further alignment and collaboration may benefit the response. furthermore, understanding physicians’ accounts provides insights into the challenges that they face on the front lines of the response and how public health can better support individualized patient care. references 1. u.s. department of health and human services. strategy to combat opioid abuse, misuse, and overdose: a framework based on the five point strategy. available from: https://www.hhs.gov/opioids/sites/default/files/2018-09/opioid-fivepoint-strategy-20180917-508compliant.pdf. accessed: october 23, 2018. 2. jones, cm. trends in the distribution of selected opioids by state, us, 1999-2011. presented at the national meeting of safe states alliance; june 5-7, 2013; baltimore, md. available from: https://c.ymcdn.com/sites/safestates.site-ym.com/ resource/resmgr/imported/jones.pdf. accessed: october 26, 2018. 3. chen lh, hedegaard h, warner m. drug-poisoning deaths involving opioid analgesics: united states, 1999-2011. nchs data brief, 2014, no. 166. available from: https://www.cdc.gov/nchs/data/databriefs/db166.pdf. september 2014. accessed: october 26, 2018. 4. kolodny a, courtwright dt, hwang cs, kreiner p, eadie jl, clark tw, alexander gc. the prescription opioid and heroin crisis: a public health approach to an epidemic of addiction. annu rev public health 2015;36:559-74. 5. king nb, fraser v, boikos c, richardson r, harper s. determinants of increased opioid-related mortality in the united states and canada, 1990-2013: a systematic review. am j public health 2014;104(8):e32-42. 6. tompkins da, hobelmann jg, compton p. providing [qualitative research in medicine & healthcare 2020; 4:8619] [page 29] article no nco mm er cia l u se on ly chronic pain management in the “fifth vital sign” era: historical and treatment perspectives on a modern-day medical dilemma. drug alcohol depend 2017;173:s11-21. 7. campbell jn. the fifth vital sign revisited. pain 2016;157:3-4. 8. prescription drug monitoring program training and technical assistance center. technical assistance guide: history of prescription drug monitoring programs. available from: http://www.pdmpassist.org/pdf/pdmp_admin/tag_history_pdmps_final_20180314.pdf. published: march 14, 2018. accessed: october 27, 2018. 9. weiner j, bao y, meisel z. prescription drug monitoring programs: evolution and evidence. penn ldi and cherish 2017. available from: http://www.cherishresearch.org/wpcontent/uploads/2017/06/ldi-cherish-brief_prescriptiondrug-monitoring-programs.pdf. accessed: october 25, 2018. 10. dunn km, saunders kw, rutler cm, et al. opioid prescriptions for chronic pain and overdose: a cohort study. ann intern med 2010;152:85-92. 11. schnell m, currie j. addressing the opioid epidemic: is there a role for physician education? am j health econ 2018;4:383-410. 12. nwokeji ed, rascati kl, brown cm, eisenberg a. influences of attitudes on family physicians’ willingness to prescribe long-acting opioid analgesics for patients with chronic nonmalignant pain. clin ther 2007;29:2589-602. 13. kennedy-hendricks a, busch sh, mcginty ee, et al. primary care physicians’ perspectives on the prescription opioid epidemic. drug alcohol depen 2016;165:61-70. 14. wolfert mz, gilson am, dahl jl, cleary jf. opioid analgesics for pain control: wisconsin physicians’ knowledge, beliefs, attitudes, and prescribing practices. pain med 2010;11:425-34. 15. terry g, hayfield n, clarke v, braun v. thematic analysis. in: willig c, rogers ws, eds. the sage handbook of qualitative research in psychology. 2nd ed. thousand oaks: sage; 2017. p. 17-37. 16. centers for medicaid and medicare services. quality payment program: explore measures. available from: https://qpp.cms.gov/mips/explore-measures/quality-measures. accessed: november 3, 2018. 17. u.s. pain foundation. states beginning to support reimbursement for alternative care. available from: https://uspainfoundation.org/news/states-beginning-to-support-reimb ursement-for-alternative-care/. published: august 1, 2018. accessed: march 2, 2020. 18. centers for disease control and prevention, national center for injury, prevention and control. cdc guideline for prescribing opioids for chronic pain. available from: https://www.cdc.gov/drugoverdose/prescribing/guideline.ht ml. revised: august 29, 2017. accessed: november 5, 2017. 19. illinois health and hospital association. opioid prescribing guidelines for patients in the emergency department and immediate care centers. available from: https://www.teamiha.org/files/non-gated/quality/opioid-guidelines-longversion.aspx. published: april 2018. 20. overton hn, hanna mn, bruhn we, et al., opioid after surgery workgroup. opioid-prescribing 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[page 30] [qualitative research in medicine & healthcare 2020; 4:8619] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2019; 3:8200] [page 87] introduction over recent years in the uk, there has been a marked increase in the reporting and diagnosis of mental health problems in young people, along with an increased awareness of these issues amongst the public, health and social work practitioners, and policy makers. in surveys, more young people report experiencing difficulties related to their mental health today than 30 years ago including, particularly, reports of deliberate self-harm.1,2 according to earle,3 the number of young people attending emergency departments due to psychiatric and related conditions has more than doubled between 2010 and 2015 (p. 1), as has the number of referrals made to child and adolescent mental health services (camhs). demand for specialist services is growing and, as of 2016, child and adolescent services were, on average, turning away nearly a quarter of children referred to them for treatment.4,5 most recent figures relating to the mental health of children and young people in england in 2017 indicate that one in eight 5-19 year olds had a mental disorder.6 these data identify emotional disorders as the most common mental health issue for 11-16 year olds. concurrently, there has been a swell in mainstream media commentary on the rise of mental health related problems amongst young people (including depression, anxiety and deliberate self-harm) with speculation about why this is happening.7-17 cumulatively, these observations, variously couched in the rhetoric of epidemic and crisis, suggest that something very disturbing is happening with blame attributed to a range of variables.10 however, evidence to support the reasons for such a dramatic increase is lacking and mental health is usually discussed as if it was based on uncontested objective diagnoses of there’s just huge anxiety: ontological security, moral panic, and the decline in young people’s mental health and well-being in the uk jo bell, marie reid, judith dyson, annette schlosser, tim alexander faculty of health sciences, university of hull, hull, uk abstract this study aims to critically discuss factors associated with a recent dramatic rise in recorded mental health issues amongst uk youth. it draws from interviews and focus groups undertaken with young people, parents and professionals. we offer valuable new insights into significant issues affecting young people’s mental health and well-being that are grounded in their lived experiences and in those who care for and work with them. by means of a thematic analysis of the data, we identified an increase in anxiety related to: future orientation, social media use, education, austerity, and normalization of mental distress and self-harm. we apply the notion of ontological security in our interpretation of how socio-cultural and political changes have increased anxiety amongst young people and consequent uncertainty about the self, the world and the future, leading to mental health problems. there are also problems conceptualizing and managing adolescent mental health, including increased awareness, increased acceptance of these problems, and stigmatisation. we relate this to the tendency for moral panic and widespread dissemination of problems in a risk society. in our conclusion, we highlight implications for future research, policy and practice. correspondence: jo bell, faculty of health sciences, university of hull, cottingham road, hull, hu6 7rx, uk. tel.: +44.0.1482.464687. e-mail: j.bell@hull.ac.uk acknowledgements: the authors would like to express their sincere thanks to all of the young people, parents/carers, professionals, schools and organisations who helped to make this project possible. key words: young people; mental health; well-being; ontological security; moral panic; lived experiences. contributions: jb, study concept and design, data acquisition, data analysis and interpretation, manuscript drafting; mr, study concept and design, data analysis and interpretation, manuscript drafting; jd, study concept, data acquisition, checked interpretations, edited manuscript; as, study concept and design, data acquisition, checked interpretations, edited manuscript; ta, study concept and design, data acquisition, checked interpretations, edited manuscript. conflict of interest and funding: this research project was funded by hull nhs clinical commissioning group, uk. the authors report grants from hull clinical commissioning group during the conduct of the study. the sponsors played no role in the design and conduct of the research project, nor in the preparation, review, or approval of the manuscript received for publication: 3 april 2019. revision received: 20 august 2019. accepted for publication: 20 august 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:87-97 doi:10.4081/qrmh.2019.8200 qualitative research in medicine & healthcare 2019; volume 3:87-97 no nco mm er cia l u se on ly conditions belonging to individual people, rather than distress resulting from interaction with social forces. today’s young people are living in more stressful times.18 it is arguable that by absolute criteria they have materially easier and physically less stressful lives than previous generations, but this does not appear to have reduced their mental stress or the psychological and social consequences of strain outlined above. as material conditions have improved, psychosocial conditions have become more complicated and demanding. the transition from childhood to adulthood has become long, gradual (indeed hence the term young person), complex, and may take as long as 15 years.19 during this liminal period, young people tend to experience ambiguity about what lies ahead including diverse, often longer, educational choices and a lack of certainty about their future employment, home ownership, and the formation of intimate relationships. fifty years ago, a 16-year-old in the uk could leave school, go to work in local industry, get married, obtain independent housing, and raise children by age 25. today, such a life course is relatively unusual and young people are faced with many choices: university? who to have sex with? who to live with and when? where to live? how to earn a living, which rarely involves a durable vocation begun before age 20 and ending on retirement. health promotion and protection is another relatively new way of offering choice rather than simple conformity, as people are offered a myriad of advice about how to manage their lifestyles to optimise well-being and benefit society and the environment. young people perhaps have never had it so good in terms of choice and opportunity. however, the very plethora of choices is stressful because of the need to make those choices and because with choice comes a very wide awareness of the opportunities, resources and personal characteristics of others. more choice means more complexity, confusion, pressure and anxiety. at the same time, one should not uncritically accept these data as evidence of the cause of the increase in mental health problems in the general population. changes in culture and consequent definitions of mental health are confounded, with wider recognition leading to more frequent identification. millard20 documents how self-harm became recognised as a form of behaviour separate from suicide only in the late 1970s, entering the psychiatric curriculum later and the general medical curriculum much later. over the years emergency department staff are likely to have become more adept at recognising self-harming behaviour and patients more willing to admit to self-harm. additionally, concerns about young people’s mental health show some of the signs of a moral panic,21 where complicated social issues are reduced to alarming statistical trends and simplistic causes of those issues are sought. another feature of the moral panic is that the high profile and well-intentioned concern about the problem publicises it, normalises it and unwittingly encourages more people to get involved. currently, social media are being advocated as likely explanations of young people’s poor mental health.22 thus, a number of factors and issues have been suggested to account for this sudden dramatic increase in what are accounted for in terms of mental health problems amongst young people in the uk. however, supporting evidence is lacking, and given the wide range of terminology currently being used interchangeably to describe and document young people’s mental health, research in this area can be complex and challenging. we know of no existing qualitative research that focuses on the lived experiences of young people and those who work with and care for them, in this area. this paper aims to address this. we draw from a study on the mental health and wellbeing of young people in northern england. our research took place in 2016 and employed a mixed methods approach using online surveys and a range of individual interviews and focus groups. here we present and critically discuss insights into the main issues associated with the rise in mental health problems amongst young people in recent years drawn from qualitative data at the interview/focus group stage. we apply the notion of ontological security in our interpretation of how macro level happenings impact wellbeing on micro (individual) levels. ontological security refers to a stable state derived from a sense of continuity in regard to the events in one’s life and individual experiences.23 it involves having a positive view of the self, the world and the future. built on trust, ontological security is considered to be a precursor to generic psychological well-being.24,25 features include constancy, privacy, an autonomous sense of self, a secure base for identity construction, a sense of mastery and control, belonging, connectedness, and certainty about the future. materials and methods setting and background the research took place in a north of england city, with a large rural hinterland. it has a single specialist camhs, plus a wide variety of relevant services sited in various ways across the community. the research originated in local practitioner and policy maker concerns that young people were not getting appropriate and timely access to mental health services. it was designed, planned and conducted with the primarily practical aim of improving access to mental health services for young people. this paper represents one set of themes derived from the qualitative data, mainly in response to questions about why young people’s mental health service needs seemed to have increased. we did not set out to research the effects of the social forces discussed here on young people’s mental health, but those themes were drawn out during the interview process alongside more practical issues such [page 88] [qualitative research in medicine & healthcare 2019; 3:8200] article no nco mm er cia l u se on ly as geographical barriers to access and uncertainty about when a young person’s problems were serious enough to require referral to camhs. recruitment we undertook semi-structured in-depth individual interviews and focus groups with i) young people who had experienced problems with their mental health and who had accessed specialist services for this; ii) parents/carers of young people who had experienced problems with their mental health and who had accessed specialist services for this; iii) professionals and practitioners who work in some capacity with young people who have experienced mental health problems. in the early stages of the project, we established a steering group of young people and consulted with a variety of professionals (e.g. criminal justice system, general medicine, camhs, schools, mental health organisations and charities) who provided us with an extensive list of contacts to invite to our professionals focus groups. we recruited young people who had experience of accessing mental health to the study via a mental health charity and a voice and influence worker who worked with young people in schools. in addition, we recruited via an online survey parents and carers of young people who had experienced mental health problems and who had accessed specialist services. we distributed the survey via schools and other organisations (as in above). as part of the survey, we invited respondents to take part in a face-to-face interview/focus group about their experiences of accessing mental health services for their child. interviews we asked participants a range of open-ended interview questions which were designed to uncover perceived barriers and facilitators to accessing mental health services as well as the participants’ experience and understanding of young people’s mental health, needs of particular groups, and approaches to recognizing and working. examples included: what do you think are the main issues that have contributed to the rise in mental health problems amongst young people in recent years?what do you think facilitates young people seeking help/what helps people access support? what do you think prevents people seeking help? we encouraged them to talk openly and to actively lead the way in discussions, prompting regularly for further explanation and detail when relevant. in this paper we report on results from the first of these example questions, which asked of all groups of participants: what do you think are the main issues that have contributed to the rise in mental health problems amongst young people in recent years? we obtained ethical approval for the study from the faculty of arts and social sciences ethics committee at the university of hull, uk. participants took part on the basis of anonymous, voluntary informed consent. the total number of interviewees is shown in table 1. we undertook a range of in depth individual interviews and focus groups including: three individual interviews (all female) and one focus group (n=5: 1 male, 4 female) with young people (aged between 14–19 years) who had experienced mental health problems and who had accessed mental health services; three individual interviews and one focus group (n=2 female) with parents of young people who had experienced mental health difficulties and who had accessed local mental health services; and three focus groups (n=4; n=4; n=3) with individuals who work with young people in a professional capacity across a variety of settings. these included: 2 youth workers (1 male, 1 female), 2 teachers (female), 4 specialist mental health workers (female), 1 general practitioner (male), 1 social worker (female), and 1 emergency services practitioner (female). on average, interviews and focus groups lasted for 60 minutes but ranged from 30–90 minutes. we did not collect data on extent of mental health difficulties experienced, or age of parents/carers and professionals. parental consent was obtained for one 14-year-old male participant. due to risk of identification, comments from individual participants are not specified in our findings. instead, we attribute comments to specific groups (e.g. fg1, fg2, fg3, fgyp). analysis we audio recorded interviews and focus groups, transcribed them verbatim, then removed all identifying information. we analyzed data using thematic coding and analysis to categorise data into themes relating to the specific research question.26,27 thus, to begin with we selected all data collected in response to the question: what do you think are the main issues that have contributed to the rise in mental health problems amongst young people in recent years? as interviews and focus groups were open-ended and largely participant led, respondents often tended to go off track in conversation and would return to the theme later in the interview. where this happened we also highlighted and extracted these data. as a theoretically flexible approach, thematic analysis provides a way of understanding participant experiences that is consistent with, and relates back to, their lived realities.27,28 thematic analysis does not need the same level of [qualitative research in medicine & healthcare 2019; 3:8200] [page 89] article table 1. total number of interviewees from all three groups. individual interview focus group total young people 3 1 (n=5) 8 parents 3 1 (n=2) 5 professionals 0 3 (n=4; 4; 3) 11 24 no nco mm er cia l u se on ly detail in the transcript as conversation or discourse analysis; there is no one way to conduct thematic analysis, and there is no one set of guidelines to follow. however, there is consensus that thematic analysis requires a rigorous account of all verbal (sometimes nonverbal) responses.27 we used the six stage approach recommended by braun and clarke:27 i) familiarisation of the data (through repeated listening while reading transcripts; we listened for tone to identify any incongruencies in the meaning of words, e.g. as with sarcasm), ii) generation of initial codes (our initial ideas about the data, and what was interesting about them with regard to the research question), iii) searching for themes (consideration of how different codes combined for themes), iv) reviewing themes (by reviewing themes at the level of coded data extracts and within the context of the entire data set), v) defining and naming themes (we aimed to identify the essence of what each theme was about and where possible we used participant words for naming of themes) and vi) producing the report (which we aimed to be concise, logical, and interesting with sufficient data to evidence themes identified). one author (jb) created the initial coding framework and two (mr and as) independently coded transcripts by way of inter-rater reliability. this was an iterative process by which the framework was adjusted and recoding occurred until there was over 90% agreement between coders. results when we asked about the main factors associated with the rise in mental health problems amongst young people in recent years, participants talked most about a perceived increase in anxiety. we identified this as our overarching theme. different issues and explanatory factors (accounting for this perceived increase in anxiety) were identified across the data set, which we coded into sub-themes. these were: future orientation; damaging effects of social media; changing landscape of education; austerity and inequality; normalization of mental distress. we present these in turn below. pressure and uncertainty about the future this theme attributes an increase in anxiety to the complexities of growing up in a modern changing society with competing pressures and uncertainty: young people can’t be young people because there’s too much pressure on them…our society as a whole is just a lifelong pressure and we don’t seem willing to reduce it (fg1). young people don’t have the opportunity and space to work out who they are in the world (fg2). i think there’s even more and more teens getting mental health problems… mostly the kind of depression, self-harm because the pressures in life are getting harder right now… there’s more competition (young person). participants spoke about the negative impact of all this on young people’s aspirations for the future, highlighting perceived tensions between expectation and reality as in this example: this very broad idea that we as a society are bringing young people up with these new expectations that you can achieve anything in life, you can go where you want, do what you want, have what you want but the reality actually is not everyone can have that…. i think that’s the root cause of, not just young people’s mental health issues but mental health as a, as a general rule... (fg1). this young person described her uncertainty about what the future holds: uncertainty about your future because it just… keeps getting worse and all... the political parties getting worse and whatever is happening, it just creates that kind of… anger… what will my future look like, it’s not looking good for young people right now… obviously unemployment and things like that … it contributes majorly to at least the start of a mental illness and obviously once something starts mentally it can quickly get worse… it’s a confusing time in your life and i think having this really uncertain surrounding with wars happening … it’s just that fear… damaging effects of social media participants perceived social media use to be a major contributing factor to anxiety amongst young people. they depicted a hostile online world filled with hate, bullying, and pressure from which there is no escape: the thing that comes mostly to mind is social media and about how that’s used, and what gets seen out there and what gets tweeted and lots about hate and trolling and i think that can’t help anybody’s mental health (fg2). 100% social media… there is so much pressure on young people… online bullying… you don’t have to talk to a person face to face, it’s so easy to just type that thing, it’s sent and everyone sees… a photo’s there and everybody can see it… you literally ruined their life… (young person). we have a huge issue with social media, we have a huge issue with pornography… we have massive problem with sexting, massive, we deal with that weekly (fg3). images that have been sent … the pressure from… there is no escape… because you go home and it’s still there… through facebook … through snapchat… that has a huge part to play in that. going home and shutting the door just doesn’t happen anymore (fg3). participants tended to think that social media practices were damaging to young people’s reputation and position [page 90] [qualitative research in medicine & healthcare 2019; 3:8200] article no nco mm er cia l u se on ly in the peer group, with implications for social development and emotional well-being. none of the participants actively dissented from this type of opinion. the prevalence of, and concerns about these issues, we argue, shifts the social norms regarding them, making the problems potentially worse, a point we return to later. increasing school pressures participants mentioned another significant change contributing to increased anxiety in young people, from their secondary schools, which over recent years have become more pressurised because they are increasingly assessed to national outcomes, such as the proportion of pupils achieving specific grades in national exams. this was perceived as having created multiple pressures and expectations: schools put way too much pressure on the kids… i’ve noticed more students now coming through saying i’m stressed… and crying, and i think that filters down obviously from us putting pressure on to them, they’re getting pulled in so many different directions … (fg1). exam pressure’s huge on them because they’ll feel that not only from their peers but from the teachers, from their parents.… (fg3). these perspectives were also echoed by young people: more competition…out there for everything… obviously that’s an issue for education, that it’s getting so much harder, … gcses… it’s so difficult …. i was very anxious about my education (young person). everywhere now… schools are getting less funding, they’re turning into academies and academies are focused on grades and business, it’s a business rather than a school…. there’s just huge anxiety…. (young person). professionals spoke of schools under increasing pressure to achieve better results, with constant changes and messages from government and media that they are not good enough. increased pressures on teachers in schools can mean teachers do not feel they have time to build relationships with pupils and to understand their difficulties: pressure on schools and young people… to get a decent ofsted report… the pressure that they’re under, potentially can undermine how they then relate to young people and children … i think those sort of societal norms are changing in terms of the pressure on young people (fg1). austerity; reduced resources many of the issues above relate also to economic pressures brought about by the austerity policies of uk governments over the past decade. participants felt that young people’s services, other than schools (themselves subject to budget cuts), had vanished or become unable to function in a timely and effective fashion. professionals spoke at length about the cumulative effects of funding cuts to health and community services for young people as the following quotes illustrate: i think there has always been a tendency for mental health services to be at the bottom of the ladder … when the money’s handed out… they’re being crucified… in terms of the cuts… since austerity (fg3). and there doesn’t seem to be that… long term vision… ….(fg2). … the youth clubs, there is a policy of them all being closed down… the long term impact of that means there’s nobody there for the young people… there’s nowhere for them to go… (fg3). respondents were vocal on the impact of these changes on young people, particularly with regard to reduced access to mental health services: …that whole idea of the waiting times as well… an hour, if you are struggling mentally with mental health… feels like six months, so eighteen weeks… when you are at a really low point is just unachievable in your mind… (fg3). …services are being cut, families are feeling under pressure…. purses are being pinched in all directions… it’s a really confusing place to be... people have got a heck of a lot to be angry about and confused (fg2). normalisation of mental distress and self-harm a final theme derived from our data indicates increased tolerance towards mental health problems. participants felt that young people nowadays tend to feel comfortable talking about mental health and self-harm and they believed that social attitudes have changed: i feel like there’s an increase in numbers because… more people are telling people… being more open about it (fgyp). the role of social media in this attitudinal shift was also recognised: i think it’s spoken about a lot more because… things like… twitter have got bigger, but back then… it was a lot more sort of hush hush… whereas now it’s spoken about, people know it happens (fgyp). some respondents suggested a consequence of increased openness is that more young people are engaging in, or admitting to, self-harming behaviour and identifying as having mental health problems because they regard them as acceptable or interesting: they’re extremely open talking about it…. so they’ve tried it… just sort of like almost following the crowd really...they tell each other about it, and so it dawns on them that it is an option… they feel stressed and they don’t know what to do and they think oh maybe that works…(parent). this professional extended the idea by suggesting selfharm is not only acceptable but appealing for some young people as a way of gaining popularity: it’s almost… for want of a better word… it’s a cool [qualitative research in medicine & healthcare 2019; 3:8200] [page 91] article no nco mm er cia l u se on ly thing to do…, when i first started, we would see girls and some boys, coming in very covered up… very discreetly sneaking in… and feeling quite embarrassed, whereas now we see girls…. scars on show… almost as something that they’re quite proud of in a sense… asking for stitches when it’s just not necessary… really unusual from what it used to be like… i don’t know how else to describe it really but, that it’s… almost like a fashion (fg1). this view was also reflected on by some young people as illustrated in the following extract: … recently there’s been a lot of people… like competing against each other, like saying oh yeah, my anxiety’s worse than yours because i have panic attacks and social anxiety or whatever, and then it’s like… cool to be mentally disturbed if you know what i mean … (fgyp). participants recognised the role of media in raising awareness of young people’s mental health as suggested above. in these extracts, young people attributed social media to both the popularisation and spread of self-harm: with social media… so many people see it online and… might think oh i need to fit in … with everyone seeing it online and it being such a big thing now and a lot more people talk about it in school and it’s just a lot more known about… i see it… every day down my newsfeed… people sharing it ... (fgyp). you'll often find on facebook…… people cutting themselves and saying do you still think i’m beautiful (fgyp). i think a lot of it comes with celebrity influence… a lot more celebrities are sort of coming out and saying look i suffer with this… sort of like trying to aspire, it’s almost like a fashion trend (fgyp). discussion participants said that young people find their lives pressurised and the future uncertain and unpredictable (as suggested by morgan et al.).18 pressures can be amplified by social media and reduced resources for mental health and other services. self-harm and mental health problems are more acceptable, or recognised, ways of coping with pressures than they used to be. participants felt that austerity, hence budget cuts, and increased assessment of schools had made matters worse. our findings chime broadly with existing literature on the massive transformation of contemporary society that castells29 called network society and its impact on individual mental health.24 in this age of rapid social transformations, globalization, and the segmentation of society, we suggest, young people face a landscape of competition, academic stress, bullying, and relational, life course, well-being, and identity worries. moreover, there is evidence of similar patterns and trends in other western developed nations suggesting this is not a phenomenon limited to the uk. for example, increasing rates of mental disorders among young people over time have been highlighted in australia and the us (eckersley),30 the netherlands, norway, and hungary (sweeting et al.)31 and canada (malla et al.).32 eckersley30 discussed the adverse impact of societal changes on young people’s mental health in western developed nations, arguing for a greater understanding of existential and relational factors and a shift in emphasis to cultural explanations. living in a world under pressure: applying the lens of ontological security a recent report by the children’s commissioner for england on public spending on children suggested that spending on youth services and prevention has been cut by 60% over the past decade.33 the impact of this on young people was discussed by cummins,34 who argued that austerity and associated policies have combined to increase the overall burden of mental distress and marginalization. the impact of this has also been felt by schools, who have had to make up for cuts to young people’s health and social care services. and, at the same time, changes in the education system towards reductionist notions of performance and economic rationalism (where funding is contingent on exam success)35 have added to this burden. our analysis highlighted a number of ways in which these related issues have impacted negatively on young people. in particular, our interpretation of the increased academic pressure that our participants spoke of, we argue, is made more poignant by torrance36 who argued that the use of assessment to raise educational standards have been greater in the uk than anywhere else in the world. thus, we suggest, austerity combined with increased academic pressure, rising expectations and competition, both demoralises and provokes anxiety amongst young people, contributing to pressure at an individual level. marsh37 and mills38 discuss how austerity policies create harsh, hostile, and unkind environments. participants felt that in practice this applied especially to young people living with mental health problems. at an individual level, the psychological impact of this is anger, anxiety, despair, powerlessness. the psychological impact of austerity was also discussed by mcgrath et al.39 who argued that austerity policies have psychological costs such as instability, insecurity, and powerlessness, which have been shown to increase mental health problems. austerity makes people sick by psychologically and physically wearing them out (such as in waiting weeks or months for an appointment with a mental health service). it is probable that austerity has resulted in a widening gap between the ideal of young people’s mental health service provision and its reality, which generates further pressure and stress amongst young people who seek help. insecurity and powerless[page 92] [qualitative research in medicine & healthcare 2019; 3:8200] article no nco mm er cia l u se on ly ness are key austerity ailments that have a damaging psychological impact, destabilising ontological security amongst those affected by eroding a sense of predictability and trust. however, the vocabulary that participants used to describe the atmosphere of the changing world for young people, such as confusion, fear, anxiety, pressure, anger, have, for a long time, been associated with development at this stage of life. for example, the seminal work of g. stanley hall in 1904 characterizes adolescence as a time of storm and stress.40 so, are things really much different now? contemporaneously with the increase in public austerity in the uk has come exponential growth in social media use, especially by young people and increasingly on mobile devices so that social media can be accessed anywhere at any time. according to the royal society for public health,22 this clearly has deleterious effects on mental health, which are widely attributed to social media’s purposive design to encourage frequent use, the potential for invidious comparisons of oneself, and the possibility that social and aesthetic blunders, including inept use of social media, can be disseminated widely, rapidly, and permanently.22 these make every day social life more stressful, as suggested by our participants, particularly for people who have weaker self-esteem. however, social media also reflect and perhaps help to exaggerate the nature of contemporary society towards individualism, consumerism, and overemphasis on constructing social networks on the basis of people’s superficial characteristics. walgrave et al.41 discussed the role of social media in the lives of young people, including mental health, and suggested that social networking sites represent a new way for young people to explore their identities. in the last decade, social media have transformed the methods by which we are social, the geographical reach of who we can be social with, and the pressures that come with reliance on the opinions of others. it has extended the range of feedback from close friends, to acquaintances and peers who are acquired as a currency of popularity (i.e. how many friends have you got on facebook or followers on instagram?). these remote friends widen the pool of people to compare oneself to, but with relatively weak social bonds. remote friends may not be sources of support in times of trouble and, unlike close friends, it is not easy to check on their representations of self on social media. goffman,42 in his theory of self-presentation and impression management, noted the great psychological effort required for continuous self-monitoring, as individuals try to manage the impressions that other people form of them by presenting themselves in ways that they perceive will be favourable. this effort can be conscious or subconscious and fuelled by awareness of our place as actors on the stage of life, where our every move is scrutinised and judged by an on-looking audience. perhaps this difficulty is compounded by social networking practices: as the number of people in the social network expands, so does the size (and gaze) of the imaginary audience and the impression management and self-presentation work required to respond to it. moreover, the endemic use of smartphones means that it can be difficult to ever go backstage (as goffman described it) because one’s every word and action can potentially be broadcast by nearby friends or family members. boyd43 argues that imagined audiences and collapsed contexts are par for the course in the social life of networked young people. collapsed contexts occur when people are forced to grapple with otherwise unrelated social contexts that are rooted in different norms and demand different social responses. as in ogburn’s44 cultural lag, where the psychosocial ability of humans to adapt is outpaced by sociocultural change, or, in this instance, socio-technological change, it becomes complicated. young people need to manipulate social media to develop their identities but need experience and skills to navigate what unfolds.43 because of the sheer rapidity of social media and the frequency with which people view them, young people’s social worlds can be chronically collapsed. they can send and receive communications of concern any time, in any social context and whatever their current emotional and physical state. moreover, not responding to social media communications, or not responding in a timely manner, can itself be perceived as a form of, usually negative, communication. a final challenge is that even if one elects to opt out of social media temporarily, they are likely to be surrounded by others who are communicating, possibly about what that person is doing (hence… there is no escape… because you go home and it’s still there… through facebook … through snapchat…). all of this, we suggest, poses problems for the immediate presentation of self, and genuine difficulties regarding the authenticity of self, so it is likely to hinder the development of social and personal identity and damage self-esteem. thus, collapsed contexts can destabilise ontological security and erode one’s sense of reliability and continuity in everyday life.24 a further point here relates to online communication, which is different from offline communication in a number of important ways. the online disinhibition effect refers to the invisibility, anonymity, and fantasy elements of online communication, which frees users to behave in much more disinhibited and shocking ways than would ever occur in a face-to-face encounter, providing an outlet for otherwise hidden dimensions of self.45,46 these transformations, we argue, help to explain the hate and trolling referred to by participants. for example, gossip and rumours have historically spread in the school environment through word of mouth. however, what is new is the way social media alters and amplifies these social situations, creating new social dynamics and the potential for drama with more and more people joining in.43 the online disinhibition effect allows people to say these things precisely [qualitative research in medicine & healthcare 2019; 3:8200] [page 93] article no nco mm er cia l u se on ly because they can get away with it and because it doesn’t feel real. as cassidy et al.47 suggest, there is no capacity for the perpetrator to witness the victim’s response. and yet it feels real to those at the receiving end because of the magnified gaze of the imaginary audience and the fact that one’s esteem and validation of identity is so strongly tied to it. thus, the huge issues to be dealt with on a daily basis (described by our professional respondents), and the perception on the part of those young people who are the subject of the drama that their lives have been ruined. their reputations have been sullied at a time when sense of self is fundamentally linked to the appraisal of others for approval, self-esteem, acceptance, and validation. this argument is consistent with a breadth of research internationally, which has shown adolescents’ intense use of social media to be correlated with low self-esteem;22,4851 decreased subjective well-being;22,52-55 lower body image satisfaction,48 and anxiety and depression.56-58 whatever the explanation, the tricky issue is about how to construct and negotiate identity and a secure sense of self in a networked era. our analysis and interpretation suggests that social media has transformed the social world in which young people are growing up. at a time when identities are fragile, young people are struggling to make sense of who they are in an environment in which contexts are networked and collapsed, audiences are expanded yet invisible, lines between reality and fantasy are blurred, and anything they say or do can be taken out of context, all whilst under constant surveillance (everybody can see it) from which they feel they have no escape and no privacy.43 in an era of social media then, identity work is bound to create anxiety and potentially threaten ontological security. the unique fantasy elements along with the asynchronisation and accessibilityof social media may also, we argue, be responsible for the creation of unrealistic expectations and aspirations referred to by participants through increased exposure and social comparison.59 this, in turn, impacts mental well-being in a number of ways. asynchronisation refers to the editing and conscious consideration of information offered, where, for example, young people can create unrealistically idealistic profiles and images of themselves online. accessibility refers to the opportunity to interact with a vastly increased number of people. taken together, this means that information about the activities and profiled lives of others is amplified and exposure to it largely unconstrained. research by chou and edge60 suggests such practices can encourage negative social comparisons and the misguided perception that others’ lives are happier and better than one’s own. other research has shown that spending intense periods of time ruminating over this can contribute to depressive symptoms amongst young people as well as a developing sense of inadequacy about themselves in the face of desires and aspirations, which are, for the most part, unattainable.56 over time, such reflection and rumination create tensions between expectations and reality referred to previously, and is similar to durkheim’s observations on the disturbance of equilibrium where to pursue a goal which is by definition unattainable is to condemn oneself to a state of perpetual unhappiness (cited in jones, p. 11).61 this explanation also helps to illustrate how a mismatch between increased expectations about the future, and the reality of what can be achieved, particularly in an era of austerity, gives rise to existential anxieties, anger, and discontent. thus, we suggest, increased social comparison via social media can lead to negative implications for identity and the future, or, in terms of ontological insecurity, an anxious relationship to being.62 hence, as one respondent put it: young people don’t have the opportunity and space to work out who they are. finally, social media were also heavily implicated in the normalisation and popularisation of mental health and self-harm by participants in our study. our analysis suggests that viewing self-harm related postings and re-postings on a daily basis on various social networking platforms gradually desensitises young people towards it, transforming it, in some cases, to something ubiquitous and appealing (mental illness is cool), or to something trivial. it would appear, perhaps, that attitudes towards the subject of mental health and self-harm have changed and social media have played a significant role in that. no longer a hidden issue, could an increased prevalence of self-harm be attributable, at least in part, to increased disclosure about such behaviour from young people rather than increased engagement with it? additionally, whilst for some, self-harmmight be an expression of frustration, anger, psychological pain, or a more serious mental health problem, for others it may be a way to gain popularity (almost like a fashion), notoriety, acceptance, or understanding. for some young people, it could be identity-related (as in testing out or experimenting with aspects of the hidden or developing self), a practice made easier by the unique affordances of online social networking as discussed above. with regard to social changes and personal choice referred to earlier, identifiable mental health problems may have become partly a matter of individual choice for some young people. although issues such as low mood, anxiety or stress are not chosen, how and when mood fluctuations become recognised by oneself or others as problematic may be chosen. our analysis suggests that, compared to the past, mental health issues tend to be simultaneously more recognised and more problematised. mental illness and self-harm have always been variously misinterpreted, misunderstood, and trivialised. so is what is being observed a greater acceptance of mental health issues, even serious ones, as being widespread amongst young people, for which there are limited helping resources in the community? does this drive people with acute problems to become cases at a specialist service, which may be stigmatising and can lead to enduring issues? [page 94] [qualitative research in medicine & healthcare 2019; 3:8200] article no nco mm er cia l u se on ly the suggestion is compatible with the notion of risk in modern society. beck’s63 work, for example, describes how modern society has become increasingly pre-occupied with preventing and managing risks (described as the believed expectations of catastrophes) that it has produced itself (manufactured risk). some of these risks, according to wimmer and quandt,64 arise out of the inability of institutions to cope with the pace of scientific progress. they highlight how scientific experts have now become the mouthpiece through which these risks are communicated to the public and how we have come to rely on experts to solve problems. the media play a key role in the construction of risk in this way by legitimizing their reality to the public (as in the rhetoric of epidemic and crisis observed in mainstream media commentary on young people’s mental health).64 together, then, the risk society and the changing relationship between public and scientific expertise creates (and feeds) public anxiety and moral panic around the issue. hence, the self-fulfilling consequences occur when self-harm is constructed as a risky behaviour. the tendency for moral panic and widespread rapid dissemination of problems can, in this way, be seen as a reflection of public anxiety (ontological insecurity) mirrored back onto young people. conclusions our findings and interpretation offer valuable new insights into the observed decline in the mental health and well-being of young people in recent years. they suggest that wider social changes may account for this, including in the uk: austerity, outcome driven education, ontological insecurity, and the rise of network society. these changes, we argue, impact life in general, and mental health and well-being in particular, because they facilitate uncertainty, which is inherently stressful and also leads to worry and rumination. this in turn is fuelled by being always under scrutiny and able to compare oneself to a wide variety of others, including unrealistically positive models and undesirably negative models. all of this, we suggest, leads to uncertainty about the world, the future, and the self. thus, some fundamental features of modern society, including those that have contributed to past progress (such as education and digital technologies), now appear to be working against better (mental) health.30 or perhaps they are transforming mental health. whilst uncertainty, unpredictability, and precariousness may have always been part of life, we suggest they may be qualitatively different in contemporary society. our interpretation supports the view that austerity and current educational systems create harsh and hostile environments and, in an age of social media where tensions between expectations and reality are amplified, young people’s capacity to visualise a place and role for themselves in the world in the future is further compromised. social media represent the most significant and unprecedented change in young people’s lives in recent years, permeating just about every aspect of life. the impact of young people’s use of these emerging technologies suggests a transformative shift in identity work for young people at a time when identities are already fragile and in a state of development. the precise nature of this shift and its consequences warrants further detailed research and investigation. at the same time, our study cautions against uncritically accepting statistics which tell us that poor mental health is on the rise, or that all social media use is damaging. as attitudes towards the subject of mental health and self-harm have changed, we suggest, identified mental health issues have become integrated into more young people’s social identities. it has become less stigmatising and shameful to self-harm, or to admit to low mood. further research is required to understand what this means, but it does not necessarily imply that young people are unhappier and have less well-being than they used to. this is a conservative and nostalgic interpretation that ignores major improvements in young people’s well-being, including more rights for young people in general. many young people now seem less ashamed of unhappiness. the increased openness is positive, but it can clash with health and social care systems that were designed to provide interventions for diagnosable or at least recognisable disorders. new ways of conceptualizing and managing young people’s mental health are required so that having low well-being for understandable reasons does not transform too readily into being diagnosed with a mental health problem. references 1.mental health foundation. mental health statistics: children and young people. available from: https://www.mentalhealth.org.uk/statistics/mentalhealth-statistics-children-and-young-people accessed: august 8, 2018. 2.the children’s society. the good childhood report; 2018. available from: https://www.childrenssociety. org.uk/sites/default/files/good_childhood_summary_20 18.pdf accessed: november 4, 2018. 3.earle j. children and young people’s mental health. london: british medical association; 2016. 4.patalay p, fitzsimons e. mental ill-health among children of the new century: trends across childhood with a focus on age 14. london: centre for longitudinal studies; 2017. 5.frith e. centre forum commission on children and young people’s mental health: state of the nation. london: centre forum; 2016. 6.nhs. mental health of children and young people in england; 2017. available from: https://digital.nhs.uk/ [qualitative research in medicine & healthcare 2019; 3:8200] [page 95] article no nco mm er cia l u se on ly data-and-information/publications/statistical/mentalhealth-of-children-and-young-people-in-england/ 2017/2017#resources accessed: january 29, 2019. 7.bacino l. shock figures show extent of self-harm in english teenagers; 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r, derr, g. can we explain increases in young people’s psychological distress over time? soc sci med 2010;71:1819-30. 32.malla a, shah j, iyet s, et al. youth mental health should be a top priority for health care in canada. can j psychiatry 2018;63:216-22. 33.kelly e, lee t, sibieta l, waters t. public spending on children in england: 2000-2020. london: institute for fiscal studies; 2018. 34.cummins i. the impact of austerity on mental health services provision: a uk perspective. int j environ res public health 2018;15:e1145. 35.kenway j, bullen e. education in the age of uncertainty: an eagle’s eye-view. compare 2000;30:265-73. 36.torrance h. assessment of the national curriculum in england. in: kellaghan t, stufflebeam dl, eds. international handbook of educational evaluation. vol 2. dordrecht: kluwer academic publishers; 2003. pp 905-928. 37.marsh i. suicide: the hidden cost of the financial crisis; 2014. available from: https://www.newstatesman.com/politics/2014/08/suicide-hidden-cost-financi al-crisis accessed: august 5, 2014. 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[qualitative research in medicine & healthcare 2019; 3:8200] [page 97] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2020; 4:9427] [page 95] introduction an estimated four million people worldwide suffer from parkinson’s disease (pd), making it the second most common progressive neurodegenerative disorder after alzheimer’s disease. pd is manifested by motor symptoms such as tremor, involuntary movements (dyskinesia), postural instability, rigidity, freezing episodes or slowness of movement, and nonmotor symptoms like anosmia, dementia, gastrointestinal disturbances, abnormal urinary function, hallucinations, depression, anxiety, decreased libido, apathy, sleep disturbances or difficulties swallowing.1,2 all these symptoms have a large impact on pd patients’ physical and mental health, which can lead to loss of autonomy and self-esteem, altered relationships, and social isolation.3 furthermore, pd does not present a challenge to patients only but also to their family caregivers.4 nowadays, pd can be managed through a variety of oral pharmacological treatments such as levodopa, dopamine agonists, transferase inhibitors or anticholinergic medication.1 device-aided therapies such as deep brain stimulation (dbs) or medicine pumps such as the duodopa or the apomorphine pump can be an option for pd patients who are refractory to oral treatment. unlike oral therapies, infusion medicine therapies are based on constant drug delivery, which can reduce the burden of motor complications associated with pd. currently, different options are available for medicine pumps like the continuous subcutaneous apomorphine infusion, the intrajejunal trigel infusion or the intestinal gel infusion of levodopa/carbidopa, also known as the duodopa pump.5 this paper focuses on the duodopa pump (from now on the pump), which delivers levodopa/carbidopa-gel suspension directly in the duodenum through a plastic cassette linked to a pump that is connected to a tube inserted to the intestine through a small cut in the gut wall.6 this allows more stable plasma concentration of the drug than oral treatments, which improves patients’ quality of life. living with parkinson’s disease and connected to the duodopa pump: a qualitative study yolanda maría chacón gámez, nikola biller andorno institute of medical bioethics and history of medicine, university of zurich, switzerland abstract parkinson’s disease (pd) is a complex and heterogeneous disease that has a major impact on the lives of patients and their family caregivers. the duodopa pump is one of the treatments options for advanced pd. the experience of patients with this treatment is largely unexplored, however. this study is based on the experiences of patients with pd as well as their family caregivers using the pump. we take a multimodal approach that includes narrative semi-structured interviews and drawings. this methodology helps participants, particularly those with difficulty articulating themselves, express their experience with the disease and their perception of the treatment. we believe that the use of drawings complementing semi-structured interviews offers additional insights into the participants’ perception of pd and the pump. in this article we focus on the following topics: the participants’ perception of pd and the pump, the reasons for choosing the pump over alternatives, and the advantages and disadvantages of this treatment for patients and family caregivers. our findings show that the participants consider pd as a complex and unpredictable disease that changed their lives and affect everyone differently, while the pump makes the disease less changeable and more manageable. correspondence: yolanda maría chacón gámez, institute of medical bioethics and history of medicine, university of zurich, wintherthurerstrasse 30, 8006, zurich, switzerland. e-mail: yolanda.chacon@ibme.uzh.ch key words: parkinson’s disease; duodopa pump; patients’ perception; family caregivers’ perception; drawings. acknowledgements: we would like to thank to the spanish foundation “la caixa” for their economic contribution to our study; to prof. dr. stephan bohlhalter, dr. florian brugger, dr. stefan hägele-link, and the self-help groups of the association parkinson schweiz for their cooperation in our study and their help in the selection of participants; and to dr. matthew baker for his assistance and comments that greatly improved this manuscript. contributions: ycg: set-up of the study, data collection and analysis; literature review; manuscript write-up; manuscript editing; nba: research supervision; manuscript write-up; manuscript editing. conflict of interest: the authors declare no conflict of interest. funding: the spanish foundation «la caixa» has funded part of the study from which the data presented in this paper are drawn. received for publication: 30 october 2020. accepted for publication: 7 february 2021. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:95-106 doi:10.4081/qrmh.2020.9427 qualitative research in medicine & healthcare 2020; volume 4:95-106 no nco mm er cia l u se on ly in 2016, a quantitative study about the preferences of pd disease patients for device-aid treatments was conducted with 401 patients in us. its aim was to evaluate patients’ willingness to accept trade-offs among efficacy, tolerability, and convenience of alternative treatments. it showed that treatment delivered via portable infusion pump was preferred over dbs.7 however, there are many aspects of the user experience with medication pumps that we still do not know. to our knowledge, no study has been conducted that addresses patients’ lived experiences with medicine pumps for pd. thus, the personal impact of these treatments on patients’ daily life is completely unexplored. we believe that we need to better understand how patients perceive medicine pumps and how they personally cope with pd symptoms and the treatment with these devices. to do this, it is also relevant to incorporate the perspective of family caregivers as a valuable source of knowledge because they are sometimes more sensitive to changes in the patient than patients themselves.8 for these reasons, we consider it very important from both a clinical and an ethical point of view to conduct more qualitative research to gain a richer understanding of patients’ and caregivers’ experiences, which will facilitate the continuous improvement of patient-centred care for pd patients. our research fills this research gap by analysing the accounts of the experiences of a sample of pd patients treated with the pump and their caregivers. materials and methods the data presented in this study are part of a more extensive qualitative study conducted in switzerland between 2018 and 2020, where we collected and explored a wide range of experiences of 44 patients with pd and aiddevice treatments (dbs or the pump) and their caregivers. we conducted multimodal research including narrative semi-structured interviews and drawings. we identified four groups of experiences reported by patients and their caregivers: i) daily life and perception of pd and aid-device treatments; ii) self-perception; iii) social interaction and partnership/family dynamics; iv) health needs of pd patients and interaction with the healthcare professionals. due to the vast amount of data obtained during this study, in this article we will focus on the first category, which covers the perception of patients and caregivers of pd and the pump, the reasons for choosing the pump over other alternatives, and the advantages and disadvantages of this treatment for patients and caregivers. for better dissemination, our results will be displayed on the website of the swiss database of patient experiences (www.dipex.ch) over the course of 2021. our research group is part of the international database of patients experiences research initiative (dipex international), which comprises fourteen countries. dipex represents a wide spectrum of diverse perspectives about the same topic (including deviant cases) and is addressed to a wide public (patients, caregivers, healthcare professionals and students).8-10 the aim of the dipex website is fourfold: i) empowering patients and family caregivers to talk about their personal health experiences and to give first-hand information that health professionals not always have; ii) offering other patients and family caregiver emotional support and help with decision-making by offering them the possibility of knowing about the experiences of others in the same situation; iii) creating social awareness about how life suffering from a disease is; and iv) serving as training and educational tool for health sciences students and professionals. study population a total of ten participants, including six patients treated (three men and three women) and four spouses (three women and one man) participated in the study section on experiences with pd and the pump. the characteristics of patients and caregivers are described in table 1. two of the patients lived in a nursing home and took part in the study alone. one of the participants was treated simultaneously with the pump and dbs. for the selection of participants, purposeful maximum variation sampling was performed to identify those individuals whose experiences were espe-cially informative and would vary from each other as much as possible. the following inclusion criteria were applied: i) patients diagnosed with pd or caregivers providing care to a pd patient; ii) patients treated with the pump for at least six months or caregivers providing care to pd patients treated with the pump for at least six months. the following exclusion criteria were applied: i) lack of legal competency; ii) people experiencing moderate or severe dementia or substance addiction at the moment of the interview; iii) lack of physical and psychological resilience to participate in an interview or difficulties interacting with an interviewer. the sample was small because only a low number of [page 96] [qualitative research in medicine & healthcare 2020; 4:9427] article table 1. description of patients and caregivers of the interview and details of their interviews. all participants were interviewed in 2019 except for the last participant, who was interviewed in 2020. group number average ageat interview average years with pd average yearswith the pump average interview duration patients 6 73 15.6 4.1 91 caregivers 4 70.7 ——57 no nco mm er cia l u se on ly patients in switzerland are treated with this therapy. despite the small sample, we reached data saturation as we did not observe new themes when analysing the last interviews. we recruited the participants with the help of neurologists, pd nurses, and patient support groups belonging to the swiss association parkinson’s switzerland. we conducted this study in collaboration with the departments of neurology of the cantonal hospitals in st gallen and lucerne. informed consent process the participants were informed in great detail about the study before participating. the day of the interview, they signed the informed consent form that allowed us to proceed with the interview and its subsequent analysis for our research project. as part of the form, study participants were also given the opportunity to express their preference between being videoor audiotaped to participate. after the interview, participants received a second informed consent form, through which they could accept or reject the use of the interview for the dipex website and choose how they wanted the information to be presented on the website (video, audio or test). to this aim, the participants received a copy of the interview transcripts as well for verification. although no personal information (such as personal names or locations) will appear on the website that could lead to the identification of participants, those who have chosen to have their interview used for the website in audio or video format are aware that they may be recognised through their image or voice by people who may be able to identify them. it is therefore important that the participants had the opportunity of verifying the transcripts to decide what they would and would not like to be public information. given that after the transcript review, not all participants may wish that some parts of their interviews would be made public, the final number of participants being included in the dipex platform could be lower than the number of participants in the study. data collection we applied a multimodal approach that includes the conduction of narrative semi-structured interviews and the collection of drawings. this multimodal methodology allows to collect data about the experience with the disease and the treatment incorporating both language-based and nonverbal communication, which helps participants, particularly those with difficulties to articulate themselves, to express their individual experiences and give them meaning.11,12 we collected the data of the presented dataset collecting drawings and conducting ten narrative semistructured interviews in the language the interviewees felt most comfortable with. seven were in german (with some parts in swiss german), two in italian and one in english and the first author conducted all of them. the first author is fluent in the three languages used in the study (german, italian and english) and conducted all the interviews without the language being a barrier between the interviewer and the interviewee. each interviewee was interviewed separately, but some of them were in company of the spouse and others were alone, depending on how they felt most comfortable. the interviews took place either at the participants’ homes or in the nurse homes where they live. to conduct the semi-structured interviews, we employed the dipex methodology, which is an established qualitative methodology developed by the research group of the department of public health of the university of oxford.9 therefore, all interviews started with a general question to give the participants the freedom to put their personal narrative into words. this question is as follows: “could you explain your experience with parkinson’s and the duodopa pump from the beginning? how did everything start?”. once the participants had finished telling their stories, we asked a series of semi-structured questions that we separated into two blocks. the first one included questions about the participants’ experiences with pd and with previous treatments like oral medication, their daily life with pd as patients or caregivers and their perception of pd as disease including questions about their drawing of the disease. the second section included questions about, their daily life with the pump, their perception of the pump including questions about their drawing if the treatment, the advantages and disadvantages of the pup over previous treatments as well as their reasons to choose the pump over other treatments. additional aspects (e.g. self-perception, relationships…) were addressed during the interviews, but as it was mentioned in the introduction, they will not be presented in this paper. to enrich the participants’ oral account, we used drawings in this study as complementary qualitative methodology for several reasons. first, to draw allows the participants to visually show the consequences of chronic health conditions and share the emotions that their condition provoke on them.13-15 second, the drawings offer additional insights to the researcher into the patients’ and caregivers’ experiences with pd and the pump because they provide access to nonverbal meanings and to a qualitatively different aspect of the participants’ experiences.16 third, we believe that a multimodal approach is an effective way to work with vulnerable participants and address sensitive topics.17 at the beginning of each interview, both patients and caregivers were invited to draw how they visually perceived the disease and the pump. although other authors usually ask the participants to draw after the interview,18 we decided to ask our participants to draw before conducting the interview to provide our participants with the opportunity to reflect on their own history and circumstances before recounting it, because we considered that this preliminary reflection would contribute to enriching the results obtained from the study. the participants re[qualitative research in medicine & healthcare 2020; 4:9427] [page 97] article no nco mm er cia l u se on ly ceived a sketching pencil, a set of twelve colour pencils, an eraser and two pieces of paper (one to draw their visual representation of pd and another for the pump). five participants opted not to draw due to physical incapability or the lack of a visual image of the disease or therapy. during the interview, the participants who drew were asked different questions about the drawings they had made. it was not necessary for the participants to know how to draw well. it only mattered that their drawing had a meaning for them that they could later explain during the interview. data analysis we performed our data analysis using a modified approach of grounded theory, which required a continuous back and forth between data collection and analysis.9,19 to proceed with the analysis, the interviews were transcribed verbatim by our team of transcribers. after the participants’ verification, we fed the transcripts and the drawings into the qualitative data analysis software maxqda, which allowed us to perform multimodal analysis. afterwards, we thematically coded data using a coding scheme (coding tree), which we primarily created based on the interview guide and continuously enriched with topics emerging from the transcripts and the drawings (mix coding).20 every time that we created a new category or code, we reviewed all coded segments to ensure homogeneity within the entire data set. this way, the concepts that we used to develop the final coding tree stem from the collected participants’ life experiences through the semistructured interviews and the drawings, which we subsequently systematized, categorized and analysed following the coding tree.9 the final coding tree was checked by other members of our team to ensure trustworthiness. the coding tree was created in english to allow the discussion about it with other members of the team who do not speak german or italian, but all data were coded and analysed in its original language by the first author. the second author supervised the analysis. further analysis will select relevant material for our website www.dipex.ch using the one sheet of paper (osop) method, which involves reading through each section of coded data for each topic and summarize on a single sheet of paper the key points of all interviews in relation to the same topic.9 the resulting text will constitute the summary of the different topics for the website. the website will be organized in the categories derived from the coding tree (e.g. pd symptoms, patients’ or caregivers’ difficulties with pd, work life with pd…), and all texts, video and audio clips on the website will be classified along these categories.9,10 ethical concerns and data management the study participants were not at risk of any physical harm and did not directly benefit from the study. we conducted this study in compliance with the current version of the declaration of helsinki, the ich-gcp and iso en 14155 (as far as applicable) as well as all national legal and regulatory requirements. the study has been reviewed by the ethics review committee of the canton of zurich, which considered that it did not fall under the swiss law on human subjects research and, after consultation with the national working group of swiss ethics review committees, issued a nation-wide waiver. subsequently, our study proposal went through our institute’s internal ethics review process (cebes). we handled all data confidentially and only persons who are directly involved in the data collection, transcription or data analysis had access to them. data are protected by copyright and belong to the institute (the name will be provided when the manuscript is accepted for publication), which can use the collected data for research and teaching purposes including publications or broadcasting. we performed data anonymization and we saved the data of each participant giving them a code (e.g. patient1, caregiver1...) and deleting from the transcripts any information that that could lead to the personal identification of participants. in order to present our results in this paper, we translated the selected quotations of the interviews that were not conducted in english using the deepl pro translator. the translated data were not stored by deepl and all translations were compliant with our data protection regulations. the final translations were verified by a native speaker to ensure accurate translation of the original quotes. results patients’ and caregivers’ perception of pd the reactions of the different participants when receiving the diagnosis were very different from each other. while most participants, both among patients and caregivers, stated that they were not surprised by the diagnosis of pd, one participant stated that she felt devastated when she received the pd diagnosis: “that was a shock to me because i didn’t know how it would play out, how it would progress. the diagnosis blows your mind. it smashes you and you feel disappointed. the truth is difficult to accept. the diagnosis is difficult to accept (…).” (patient 6). “what was the most difficult thing for you to accept?” (author 1) “that it is incurable.” (patient 6). some of the participants even expressed relief at the diagnosis because they were aware that something was wrong and did not know what. others admitted not being aware of what it meant to have pd. one of the patients said the following: [page 98] [qualitative research in medicine & healthcare 2020; 4:9427] article no nco mm er cia l u se on ly “i had no idea that it affected the whole body. i thought i just end up with tremor one day. i had no idea what it meant. and a lot of people don’t know what it means. even medical people (…) i was ignorant. i didn’t know what was ahead of me. so, they probably thought i was just cheerful by nature, but i was ignorant (…).” so, you didn’t feel shocked? (autor 1) no. i just carried on. you know and then slowly or suddenly i couldn’t do things.” (patient 4). this feeling of discovering that living with pd was much harder than they expected at the time of diagnosis was shared by other participants. when explaining their experiences with the disease, different participants expressed things such as: “this is a terrible disease” (caregiver 3);“it’s just a break in life” (caregiver 1) ;“i believe that i have been a victim of this disease for a long time” (patient 1) or “every day i also see that there is a change in the worse possible sense” (patient 5). one of the caregivers explained that his wife went through a very difficult period with the disease two years ago when she considered applying for assisted suicide (which is legally allowed in switzerland). despite the difficulty of living with this disease chronically either as a patient or as a family caregiver, most expressed relief that pd is not a fatal disease. for instance, one of the patients, who also suffered from cancer, said: “parkinson’s makes you sick, but you don’t die” (…) cancer was worse than parkinson’s because it was eating me.” (patient 5). another experience shared by virtually all patients and caregivers is the impression that pd changes your life but not in the same way for everyone because everybody’s pd is different. not only can each person have different symptoms, but each patient faces them differently, which means that each of them goes through the disease in a different way. while some responded to pd symptoms in a more physical way by trying to be active most of the day as they experienced less symptoms if they were focused on some activity, others dealt with the symptoms rather in a mental way by trying to think positively about the disease. one of the patients mentioned that facing pd with a sense of humour is the most important thing for her to not feel swamped by the disease and described how to find the fun side of the disease. “i can’t live without a sense of humour/ you can’t live without. you’ve got to see the other side as well (…) my mother had a very good sense of humour and was always giggling. so, maybe i grew up with that mentality (…) but since i have parkinson’s, i laugh much more. when i come together with friends and i tell them these stories that happened to me, and they’re very serious stories. we should really cry, but we just end up laughing (…). in rehabilitation, another woman who had deep brain stimulation and we were always laughing at one another, you know, because uhm/ these/ all these hitches, all things that didn’t work (…) and we had so much fun. (…) if you don’t get drowned by the situation, it’s very funny.” (patient 4). if we look at the way some patients and caregivers visually captured the disease on paper through their drawings, we get more extra information about how they perceive the disease. in figure 1 we can see how patient 4 visualises her feeling that her motor skills fluctuate during the day through the use of different colours. she represented pd symptoms as a figure in blue, and the effect of the oral medication consisting of levodopa as different figures in red, orange, and yellow. although this treatment improved her motor skills, its effect was not stable because it was wearing off and she began to experience off-periods. therefore, she represented movement through various figures that are intermingled during the day with the pd symptoms. “well, the colours for me, the red, orange are like dynamo, like movement and dynamics. and the blue is the more rigid, is a rigid position, a rigid / the rigid leg. that’s how i depict parkinson’s, rigidity.” (patient 4). rigidity is for you the definition of parkinson’s? (first author). yeah. stiffness (patient 4) (…) [qualitative research in medicine & healthcare 2020; 4:9427] [page 99] article figure 1. patient’s 4 perception of pd. no nco mm er cia l u se on ly so, the blue figure is the underlying disease? (first author). yeah, yeah. and that’s the release with something like levodopa. these colours there are the movement (pointing at the figures in red, orange and yellow).” (patient 4). the unpredictability of pd is reflected, in two different ways, in figure 2 from the perspective of one the care-givers. on the one hand, as pd is degenerative disease, there is always the big question of how the disease will develop in the long term and how life will be then, which is unpredictable. on the other hand, patients and caregivers need to cope with the unpredictability of the daily fluctuations of pd symptoms, which makes daily life difficult. “that’s the parkinson’s. that is, yes, exactly, the parkinson’s. you don’t know what to do next. (….). and here, what’s difficult with parkinson’s is the fluctuations (pointing at the curve) (caregiver 3). and what does the straight-line mean? (first author). this is a medicine. different drugs. (…) i don’t know where the limit is that the medication stops working. doctors don’t know that either. with one person it takes longer to reach it and with others less. we need to live every day.” (caregiver 3). patients’ and caregivers’ perception of the pump in figure 3, we see how patient 4 perceives the effects of the pump differently in comparison to oral treatment. while in figure 1 we could observe several figures in different colours reflecting movement, which contrasted with the blue figure representing pd, in figure 3 we can see how patient 4 perceives the effect of pd as a single orange figure that is jumping and contrasts with the rigidity of the figure in blue. this representation reflects her perception of the effect of the pump being more stable and consistent than the effect of oral medication, which gives her greater motor mobility throughout the day. “this is a stooping figure (pointing at the blue figure). that’s what parkinson’s does to most people. but this is what i feel like when i feel when i fed/ fed the pump (pointing at the orange figure). you know i feel much livelier. everything goes upwards instead of downwards. that’s a mix of/that’s what i feel like with the pump, okay? (…) just, you know, not dragged downwards, but moving upwards. i can move more easily and uhm i can walk very quickly when i’m/when i’m feeling good.” (patient 4). although she was very satisfied with the pump as treatment, she described a sense of dependence on the pump to be able to move properly. “i’m now living with uhm uhm an attachment to me (…) now i’m not dependent on tablets, but i’m dependent on the cassette, am i not?” looking at the caregivers’ perception of the treatment, one of them compares their experience with the pump in comparison to oral medication in figure 4. “those are the drugs (pointing at the circles on the top of the drawing, which represent the hours his wife had to take her pills every day). she had to take 8 pills a day (…). every day she was suffering from parkinson’s disease from morning to night, because she was constantly reminded that she has parkinson’s disease. and with the pump we turn it on and off.” (caregiver 3). the pills taking routine was replaced by the pump cleaning, activation and deactivation routine, which is carried out by the patient’s husband. he explained that each [page 100] [qualitative research in medicine & healthcare 2020; 4:9427] article figure 2. caregiver’s 3 perception of pd. figure 3. patient’s 4 perception of the pump. no nco mm er cia l u se on ly morning at 06.00, he takes the levodopa/carbidopa-gel out of the fridge to let it warm up a bit before putting it in the cassette of his wife’s pump at 08.00 to switch on the pump on for the day. in the evening, he switches the pump off at 18.00, and at 20.00 he cleans the tube that goes into the patient’s intestine. while caregiver 3 was explaining his drawing, he mentioned that he started a diary since his wife was treated with the pump. he used it to keep track of the involuntary movements that his wife suffers throughout the day to accordingly adjust the dose of medication put into the cassette. “the pump is much simpler. but the adjustment is very, very difficult (…) an adjustment can be good for three or four days and suddenly it’s nothing. there must be other events and then there can be fluctuations. but i think it’s much less today than it was before with the medication (…) i take some minutes to write down every day the symptoms and the duration because you can’t keep everything in your head. mr. (name_1) is our doctor and gave us free hand in varying the dosage. he gave us some recommendations and said, “try it once”. i am also aware that every parkinson is different. every person reacts differently. this is very difficult. but that’s what it is with these drugs.” the reasons to choose the pump over other treatments most participants chose the pump as a treatment because oral treatment was no longer effective for management of their pd symptoms and their quality of life was very poor. most of them expected to enjoy greater mobility with the pump and noted that the pd symptoms decreased with this treatment (e.g. less uncontrolled movements or freezing episodes). for one of the patients, the reason to choose the pump over oral treatment was that the side-effects of drugs taken orally were unbearable. his wife explained that the treatment with dopamine agonists caused him to have, as a side effect, a serious sex addiction, which led him to spend a great amount of money in sexual relations with several prostitutes. “he took drugs, various drugs. at first, they fluctuated and also people change. he was not the same person anymore, because with the pills, it always goes high and then it goes down again and then up again (…) he got stronger and stronger medication over the years (…) and the pills have very bad side effects. especially the sifrol that was what he got. and then many unpleasant things happened. so violently. and that was the reason why/i immediately told the doctor (…) he cheated on me for years with prostitutes. that was a disaster (…). that’s why doctor (name_1) said that with the pump would be much better.” (caregiver 1). two patients were offered the possibility to choose dbs. one of them was doubtful at first but ended up rejecting it because she would not have felt comfortable with a device inside her brain. her husband explained that he did not know how he would have reacted if his wife would have chosen dbs instead the pump because dbs is a treatment he could not morally agree with. “at first she was not determined. for her it was an opportunity. and for this reason, we were informed at the hospital. how much that i influenced her in her decision, i do not know of course. but for me it was never an issue. this is a catastrophe for me. (…) drilling holes in the brain, that’s not possible. a person is not a machine where you can screw in a screw. for me there are limits in all medicine. and it borders on ethics (caregiver 3). so deep stimulation is not an ethical treatment for you? (first author). no, no, this is a mechanical treatment (caregiver 3). why is dbs not ethical? i am not a religious person, not at all, but i think that many things are wanted, somewhere wanted it must be so. and we have to learn to accept a disease, not to accept, but to come to terms with it. that is also a difference for me. accepting it means doing nothing else, isn’t it? but coming to terms with it means that we simply cannot expect to be able to correct everything, everything. (…) from my point of view, it is irresponsible (caregiver 3). what is irresponsible? (first author ). drill holes there. that might take millimeters, millimeters. millimeters and then it happened. and then i would have a woman who couldn’t do anything anymore, maybe. the risk was also much too big for me.” (caregiver 3). another patient, who was not offered dbs, nonetheless was of the same the opinion as caregiver 3. he mentioned that if he had been offered dbs as a therapeutic option for him, he would have not accepted anyway because of ethical reasons. [qualitative research in medicine & healthcare 2020; 4:9427] [page 101] article figure 4. caregiver’s 3 perception of the pump. no nco mm er cia l u se on ly “the brain stimulation was out of question for me also for ethical reasons. i find it delicate when the skull is sawed open.” (patient 1). the other patient who was offered dbs as treatment did not consider the option of being treated with it because she also was too afraid of having a hole in her skull. “i find it grotesque; i mean having a whole board in your head. and it doesn’t last, it doesn’t, it doesn’t make you immune from the results (...). is it worth it?” (patient 4). (…) would have been stressful or disturbing for you to be treated with it though? (first author). (…) i can’t imagine what it’s like having a hole in your head. and they shave away your hair and you don’t know whether it’s going to be a success (…) it’s very invasive, isn’t it? (…) i think it’s incredible people are prepared to do that. (…) would you do it? (patient 4). the four couples who participated in the study explained that they assessed all the options together and jointly made the decision to try with the pump. the three caregivers felt very involved in the decision-making process, and all three patients felt supported by their caregivers. all participants (including the two patients who participated in the study without the participation of a caregiver) expressed satisfaction with the decision taken. several of them explained that a major reason for deciding on the pump was that it was an easy treatment to stop if it did not work well, whereas stopping dbs would have been more complicated. in addition, before any perforation was made in the wall of the duodenum, the effectiveness of the treatment was tested by inserting a tube through the patient’s mouth temporarily for a few days. this was evaluated positively by patients and caregivers, although one patient felt discomfort after one day and asked for the definitive tube to be inserted through the duodenum. advantages and disadvantages of the pump all participants expressed having noticed a marked improvement when they started being treated with the pump and a better quality of life. one patient was being treated at the same time with dbs and the pump and it was planned to remove the pump when dbs would start to work properly for the patient. at the time of the interview dbs was not controlling the pd symptoms to the level expected by the doctors. the patient was also more satisfied with the improvement achieved with the pump than with dbs, although he acknowledged that a proper management of the pd symptoms was lately also being difficult with the pump as well. despite this, he considers the pump as a good transition between the pills and dbs, because he could not imagine going from oral treatment straight into dbs. some of the advantages mentioned by participants were better sleep (without waking up more than once or twice during the night), a better management of pd symptoms than with pills and feeling better during the day. the relief of not having to take pills every three or four hours was shared by both patients and caregivers, as the daily routine revolved around the time the pills needed to be taken. one of the caregivers explained that her husband could eat better now that he didn’t have to take so many pills a day. two of the caregivers mentioned that the pump calmed their spouses greatly and they were more psychologically stable than when their treatment consisted of oral medication. in one of the cases, the reason for the increased stability was that her husband no longer suffered from sexual addiction caused by oral medication and did not seek sex with prostitutes, which markedly improved the relationship between them. in the other case, the family caregiver explained that her husband had great fluctuations in his mood and suffered from deep depression when he was on oral medication. once the patient received treatment with the pump, he experienced no ups and downs. however, participants also reported some disadvantages they found with the pump as therapy. for example, one caregiver mentioned some disadvantages that were shared by other participants: “you are simply not that free or flexible anymore (…) yeah, it’s just that you’re just sort of fixated. in theory one could do anything, but i find it too delicate. an example is swimming. one can go and cover it with special plasters. the people in charge of the pump say of course, it’s no problem, you can do it. but i am too sceptical. nowadays in these swimming pools, or, with all these chemicals and chlorine, you don’t know what can happen, so i just don’t trust it. that’s the puncture that goes in, and what if some bacteria get in there. so, you’re just restricted with sports (…) and then with yoga one can’t do some things anymore because otherwise you lie on the pump, don’t you? one can still do exercises, but not many. if the pump were smaller, that would be better. and also, with travelling, you always have to take everything with you. i always have medicine in my handbag, if the pump breaks down, or if he needs an extra dosage. then i also must always have batteries with me in case the pump runs out of battery.” (caregiver 1) the impossibility of pursuing some activities with the pump, that patients pursued before starting treatment, was described by other participants. for example, patient 5 used to exercise daily with a stationary bike and had to stop doing it when she started to be treated with the pump. patient 2 mentioned that he had to stop swimming, as previously mentioned by caregiver 1, although he was also told [page 102] [qualitative research in medicine & healthcare 2020; 4:9427] article no nco mm er cia l u se on ly that swimming was possible after removing the pump and tube. however, his reason for stopping swimming was not due the fear to bacterial infections but to the concern that during the time he did not have the pump, he would have pd symptoms that he could not control otherwise. the large size and weight of the pump was also an aspect regarded as an inconvenience by most of the patients. one of the patients described having to carry such as a large device as feeling like being a kangaroo with a pouch. the pump size and weight were also reasons why some participants had to stop doing certain physical activities like riding a stationary bike or doing yoga. since doing physical activity is considered by patients to be essential in coping with pd, it poses a problem for them not to be able to do physical activities that they previously did because of the size of the pump. patient 1 related the large size of the pump to a lack of technological development of the pump by the industry. he considers that the companies that make this pump should pay more attention to the daily needs of pd patients. “if you already have such a disease, then you should make your day as easy as possible for the patients and then you are abandoned by the industry.” (patient 1). only one of the patients explained that for him the pump size is not a problem as over time one gets used to it and does not notice it anymore. finally, diverse accounts regarding the care of the pump were shared. while one caregiver reported that the daily cleaning of the tube connecting the patient’s duodenum to the pump was very laborious and time-consuming, another caregiver stated that this task was very bearable for him and was not a burden in his daily life. the two other caregivers explained that they did not take care of the cleaning of the tube because their husbands could still take care of it. in the case of the two women living in a nursing home, the tube cleaning was assumed by the nurses working in the centre. discussion pd is a very heterogeneous disease not only in the symptoms it can present but also in the progression of the disease over time.21 this heterogeneity can cause problems in diagnosing the disease and also in finding the right treatment for each patient. as pd is a chronic and degenerative disease, patients try different medical treatments throughout their lives. from a pharmacological point of view, there are a wide variety of oral treatments to manage pd (e.g. levodopa, dopamine agonist, transferase inhibitors, anticholinergic medication).1 however, pharmacological management of pd can be especially challenging when motor complications can no longer be controlled by changes in oral treatment or by combinations of drugs. worsening symptoms due to disease progression or increasing side-effects caused by some oral treatments have an undeniable impact on the quality of life of patients and their families, as the life and daily routines of caregivers is also affected in such situations.22,23 different aid-device therapies such as dbs or medicine pumps are available if conventional pharmacological treatments fail. these therapies differ in their invasiveness, side-effect profile, and the need for nursing care and work differently in each patient.24 our results reveal that the duodopa pump is considered by our participants as a treatment capable of minimising the signs of pd by facilitating the daily life of patients and their caregivers. some of the described advantages of this treatment were better management of pd symptoms than with oral treatments, fewer side-effects, increased comfort due to not having to take pills all the time, improved quality of sleep, and greater psychological stability. all this translates into an improved quality of life of patients and caregivers. nevertheless, some discomforts in daily life with the pump have also been described: e.g. difficulties in practicing sports like swimming or yoga, the need of greater advanced planning when travelling, the discomfort due to the great weight and size of the device, the time consuming task of cleaning the tube connected to the intestine or the feeling of being tied to a device. nonetheless all participants were satisfied with the choice of being treated with the pump, reducing the size and weight of the device could help to alleviate the above-mentioned discomforts and further improve the quality of life of patients and their caregivers. furthermore, our results show that the pump could be a therapeutic alternative for those people who are reluctant to undergo dbs because of insurmountable fear, due to ethical reasons or who would not feel comfortable with a device deep in their brains for other reasons. our study also provides relevant information about the participants’ perception of pd as a disease that elicits heterogeneous reactions both in the acceptance of the diagnosis and in coping with the disease in their everyday life.25-27 while some patients received the diagnosis with relief or were not impacted by the diagnosis of pd due to lack of knowledge about the disease and not knowing exactly what they were facing, one patient described the diagnosis as devastating and difficult to accept. what all participants seem to agree on is that pd ended up being a very difficult disease to deal with, which is different for everyone. therefore, each patient deals with the disease in a different way by establishing different coping strategies (e.g. by being active, facing the disease with sense of humour, or thinking positively). the caregivers also need to establish their own coping strategies (e.g. establishing mechanisms like a diary to understand how pd symptoms develop over the course of a day for their loved ones ), because they play a fundamental role in the daily management of the disease.28-30 our results also show that pd is accounted for as a [qualitative research in medicine & healthcare 2020; 4:9427] [page 103] article no nco mm er cia l u se on ly less bad disease to cope with than other diseases, such as cancer, because it is not considered a terminal disease. this finding seems to contrast with the perception of other chronic patients, who consider that the consequences of chron’s disease are similarly strong as those of patients with cancer.31 however, other study about the patients’ experiences with multiple sclerosis show that the diagnosis of this disease dissipates fears of acute danger, which is comparable to what our participants expressed when considering that pd is not a fatal disease. another similarity between the perception of our participants with pd and the patients with multiple sclerosis participating in the reenen et al. study is that the initial relief is challenged by the realization that pd is a disease that progresses and worsens over time.32 this coincides with the difficulty of our participants to cope with the disease progression and its unpredictability that characterises pd both in the manifestation of its symptoms and in its progression. our multimodal approach including narrative semistructured interviews and drawings allowed us to obtain an additional insight into the participants’ perception of pd and the effects of the pump. the integration of drawings as a complementary methodology to the interviews enabled us to better understand the complexity of the reality that they live in dealing with their disease and its treatment. for instance, the use of curves and lines allowed caregiver 3 to represent in figure 2 the fluctuation of their wife’s symptoms during the day and the uncertainty it causes due to not knowing what will happen next. through the use of colour, patient 4 could describe the phenomenon of wearing-off of dopaminergic drugs through different figures in yellow, red and orange tones that overlap each other in figure 1, and in figure 4 the contrast between the pd symptoms and the effects of the pump. the body drawn in orange that is jumping reflects her perception of the effects of the pump as continuous and unchanging, which not only makes her feel more alive but also more confident, by providing her more control over her illness than the oral medication she was taking before starting the treatment with the pump. this sense of greater control over the disease is also apparent from figure 4, in which caregiver 3 pictures the pump as a device that figuratively allowed his wife to turn the pd on and off. we decided to adopt a multimodal approach to explore how different modes could make meaning in ways that are creative and that goes beyond the pre-established meaning of words.33,34 although the use of drawings to explore the way in which people understand and experience different diseases was traditionally limited and mostly confined to the paediatric field,18,35 their use has slowly emerged in the last decade as a valuable tool complementing semi-structured interviews for investigating patients’ perceptions about their illness and treatments that are difficult to verbalize.36 for instance, scott explores the concept of aids among women living with hiv adopting a multimodal approach including interviews, free lists and drawings.37 besser et al., asked their participants to draw during the interviews to have a further insight into how patients view osteoporosis and its consequences in their daily lives, which elicited powerful emotions from the participants.38 kirkham et al., in their study about experiences with chronic pain, used the drawings to explore the participants’ individual representations of their pain, which they consider an invisible condition and difficult to describe with words.39 this description of the pain through the colour coincides with the representation of the motor skills fluctuations typical of pd and the effects of the pump on the improvement of its symptoms depicted by patient 4 through the drawing of body figures in different colours. strengths and study limitations our study applies the narrative dipex approach, which allowed us to explore in-depth the perception of patients and caregivers of pd and the management of it with the pump. to our knowledge, it is the first study exploring their personal experiences with this treatment and its impact on the patients’ and caregivers’ daily life. the perspective of caregivers provided us with valuable information about pd and the advantages and disadvantages of the pump that patients cannot always offer. despite the small sample, the study has managed to collect results that reflect different types of circumstances, experiences, impressions and opinions of both patients and caregivers. some participants, both patients and caregivers, experienced a beneficial emotional effect for having been listened to and for their personal stories having been taken into account for research. furthermore, we believe that the use of drawings as complementary methodology to narrative semi-structured interviews elicited the further verbal data because they allowed the participants to reflect on what they have drawn and express these reflections during the interview.16 the possibility of expressing themselves through drawings also gave them the opportunity to express emotions that would not have been externalised by words alone and facilitated the communication of difficult experiences.40 therefore, our multimodal research including narrative semi-structured interviews and drawings offer additional insights into the participant’s experiences not only with the disease but also with the treatment, which led to a more complete data analysis. we identified three possible limitations in our study. firstly, the participants were only interviewed after being treated with the pump and not before they started receiving this treatment. although all participants were asked questions about their daily lives and how they were doing before treatment, those who have lived with pd and the pump for a longer period of time may have lost perspective on the before and after. secondly, we could have missed some negative experiences with the pump due to the fact, that from our experience, people who have had bad experiences are often more reluctant to share their experiences than those who have had positive experiences with the treat[page 104] [qualitative research in medicine & healthcare 2020; 4:9427] article no nco mm er cia l u se on ly ment. likewise, the perception of the pump users opting against dbs needs to be further investigated. thirdly, our findings may be linked to a specific cultural setting, which could make it difficult to extrapolate them to other countries. it would therefore be valuable to carry out this study in other countries so that the results can be compared. conclusions pd is a complex and heterogeneous disease that changes the lives of patients and their caregivers from the moment of diagnosis affecting all facets of their daily lives.26,29 from a clinical perspective, finding the right treatment for each patient is neither an easy task. medicine pumps are one of the options along with dbs for advanced pd when oral medication stops working. however, the user experience with these medication pumps is largely unexplored. since the patient’s perception of the chosen therapy may also play a role in the final outcome,41 it is important to better understand how patients, and with their caregivers, perceive medicine pumps and their experiences with these pumps. therefore, the presented study describes the experiences of a small group of patients and caregivers with pd and the pump. the analysed experiences offer valuable insights into the lived experience of living with pd and being treated with the pump, the caregivers’ perspective of this situation and the reasons that led the participants to choose the pump as therapy over other alternatives. we conducted multimodal research using drawings and narrative semi-structured interviews with the aim of exploring the complexity of the individual experience with a chronic degenerative disease treated with a device-aid therapy. drawing give the participants the opportunity to convey emotions through the use of colour and shape that give words a new dimension. furthermore, multimodal research methods allow us, the researchers, to look at the patients’ and caregivers’ experiences from more than one perspective, which offer us the possibility of capturing the sensate aspect of the illness. therefore, we advocate for more research done following a multimodal approach, which enables that the illness experience and the process of communicating it to another person are embodied.11 our findings show that the participants consider pd as an unpredictable disease that changed their lives, while the pump makes the disease more manageable, which improves the life quality of patients and caregivers. some disadvantages of the treatment have also been pointed out by the participants. where there was most agreement was that the size and weight of the pump was excessive, limiting the ability to perform certain activities. therefore, further technological developments leading to a reduction of the pump size and weight would be desirable. the impression of being dependent on or tied to the device was also reported and hence, future research is needed to explore this topic further. it would also be relevant to carry out a comparative study between different countries to assess whether the cultural component plays a role in patients’ and caregivers’ perception of medication pumps. as a final conclusion, our findings show that despite the drawbacks, our participants were satisfied with the improvements that the pump has brought to the patients’ physical and mental health. from the perspective of our participants, these improvements could not have been achieved otherwise. references 1. hayes mt. parkinson’s disease and parkinsonism. am j med 2019;132:802-7. 2. kulisevsky j, oliveira l, fox sh. update in therapeutic strategies for parkinsonʼs disease: curr opin neurol 2018;31:439-47. 3. soundy a, stubbs b, roskell c. the experience of parkinson’s disease: a systematic review and meta-ethnography. sci world j 2014;2014:613592. 4. calne sm. the psychosocial impact of late-stage parkinsonʼs disease. j neurosci nurs 2003;35:306-13. 5. ray chaudhuri k, qamar ma, rajah t, loehrer p, sauerbier a, odin p, et al. non-oral dopaminergic therapies for parkinson’s disease: current treatments and the future. npj park dis 2016;2:16023. 6. odin p, wolters e, antonini a. continuous dopaminergic stimulation achieved by duodenal levodopa infusion. neurol sci 2008;29:387-8. 7. marshall t, pugh a, fairchild a, hass s. patient preferences for device-aided treatments indicated for advanced parkinson disease. value health 2017;20: 1383-93. 8. hariz g-m, hamberg k. perceptions of living with a device-based treatment: an account of patients treated with deep brain stimulation for parkinson’s disease: parkinson patients’ views of their dbs device. neuromodulation technol neural interface 2014;17:272-8. 9. ziebland s, mcpherson a. making sense of qualitative data analysis: an introduction with illustrations from dipex (personal experiences of health and illness). med educ 2006;40:405-14. 10. ziebland s, herxheimer a. how patients’ experiences contribute to decision making: illustrations from dipex (personal experiences of health and illness). j nurs manag 2008;16:433-9. 11. jewitt c, editor. the routledge handbook of multimodal analysis. second edition, first published in paperback. london new york: routledge, taylor & francis group; 2017: p. 527. 12. adami e. multimodality. 2015. accessed 2021 feb 8. available from: http://rgdoi.net/10.13140/rg.2.1.4818. 0565 13. broadbent e, petrie kj, ellis cj, ying j, gamble g. a picture of health—myocardial infarction patients’ drawings of their hearts and subsequent disability. j psychosom res 2004;57:583-7. 14. thorpe c, arbeau kj, budlong b. ‘i drew the parts of my body in proportion to how much pcos ruined them’: experiences of polycystic ovary syndrome through drawings. health psychol open 2019;6:2 055102919896238. 15. broadbent e, niederhoffer k, hague t, et al. headache sufferers’ drawings reflect distress, disability and illness perceptions. j psychosom res 2009;66:465-70. [qualitative research in medicine & healthcare 2020; 4:9427] [page 105] article no nco mm er cia l u se on ly 16. brailas, a. using drawings in qualitative interviews: an introduction to the practice. qual rep 2020;25: 4447-60. 17. morgan m, mcinerney f, rumbold j, liamputtong p. drawing the experience of chronic vaginal thrush and complementary and alternative medicine. int j soc res methodol 2009;12:127-46. 18. guillemin m. understanding illness: using drawings as a research method. qual health res 2004;14:272-89. 19. strauss al, corbin jm. basics of qualitative research: techniques and procedures for developing grounded theory. 2nd ed. thousand oaks: sage publications; 1998: p. 312. 20. bryman a. social research methods. fifth edition. oxford ; new york: oxford university press; 2016: p. 747. 21. greenland jc, williams-gray ch, barker ra. the clinical heterogeneity of parkinson’s disease and its therapeutic implications. eur j neurosci 2019;49: 328-38. 22. borovac ja. side effects of a dopamine agonist therapy for parkinson’s disease: a mini-review of clinical pharmacology. yale j biol med 2016;89:37-47. 23. padovani c, lopes mc de l, higahashi ih, pelloso sm, paiano m, christophoro r. being caregiver of people with parkinson’s disease: experienced situations. rev bras enferm 2018;71:2628-34. 24. volkmann j, albanese a, antonini a, chaudhuri kr, clarke ce, de bie rma, et al. selecting deep brain stimulation or infusion therapies in advanced parkinson’s disease: an evidence-based review. j neurol 2013;260:2701-14. 25. merritt rk, hotham s, graham l, schrag a. the subjective experience of parkinson’s disease: a qualitative study in 60 people with mild to moderate parkinson’s in 11 european countries. eur j pers centered healthcare 2018;6:447. 26. soleimani ma, bastani f, negarandeh r, greysen r. perceptions of people living with parkinson’s disease: a qualitative study in iran. br j community nurs 2016;21:188-95. 27. plouvier aoa, olde hartman tc, van litsenburg a, et al. being in control of parkinson’s disease: a qualitative study of community-dwelling patients’ coping with changes in care. eur j gen pract 2018;24:138-45. 28. mclaughlin d, hasson f, kernohan wg, et al. living and coping with parkinson’s disease: perceptions of informal carers. palliat med 2011;25:177-82. 29. chiong-rivero h, ryan gw, flippen c, et al. patients’ and caregivers’ experiences of the impact of parkinson’s disease on health status. patient relat outcome meas 2011; 2011:57-70. 30. rastgardani t, armstrong mj, marras c, gagliardi ar. improving patient-centred care for persons with parkinson’s: qualitative interviews with care partners about their engagement in discussions of ‘off’ periods. health expect int j public particip health care health policy 2019;22:555-64. 31. van der have m, minderhoud im, kaptein aa, et al. substantial impact of illness perceptions on quality of life in patients with crohn’s disease. j crohns colitis 2013;7:e292-301. 32. van reenen e, van der borg w, visse m, et al. fear, fight, familiarize: the experiences of people living with relapsingremitting multiple sclerosis and taking oral medication. int j qual stud health well-being. 2019;14:1648946. 33. jewitt c. multimodal methods for researching digital technologies. in: the sage handbook of digital technology research [internet]. london, united kingdom: sage publications ltd; 2013. accessed 2021 jan 29. p. 250-65. available from: http://methods.sagepub.com/book/the-sagehandbook-of-digital-technology-research/n18.xml 34. bock z. multimodality, creativity and children’s meaningmaking: drawings, writings, imaginings. stellenbosch pap linguist plus [internet]. 2016;49:1-21. 35. rollins ja. tell me about it: drawing as a communication tool for children with cancer. j pediatr oncol nurs off j assoc pediatr oncol nurses 2005;22:203-21. 36. cheung mmy, saini b, smith l. using drawings to explore patients’ perceptions of their illness: a scoping review. j multidiscip healthcare 2016;9:631-46. 37. scott a. illness meanings of aids among women with hiv: merging immunology and life experience. qual health res 2009;19:454-65. 38. besser sj, anderson je, weinman j. how do osteoporosis patients perceive their illness and treatment? implications for clinical practice. arch osteoporos 2012;7:115-24. 39. kirkham ja, smith ja, havsteen-franklin d. painting pain: an interpretative phenomenological analysis of representations of living with chronic pain. health psychol 2015;34:398-406. 40. guillemin mm, westall c. gaining insight into women’s knowing of postnatal depression using drawings. in: knowing differently: arts-based and collaborative research method. first. nova science publishers; p. 121-39. 41. witek n, stebbins gt, goetz cg. what influences placebo and nocebo responses in parkinson’s disease?: placebo and nocebo response in pd. mov disord 2018;33:1204-12. [page 106] [qualitative research in medicine & healthcare 2020; 4:9427] article no nco mm er cia l u se on ly layout 1 introduction in this article, i detail a photovoice project that explored the lived experiences of community health workers (chws) operating primarily in indianapolis, indiana. despite being present in this state for several decades and comprising an estimated 670-1,260 workers,1 chws are relatively unknown by medical professionals and the general public. this lack of awareness complicates their integration within the broader workforce and, thereby, fully realizing their unique roles that can be harnessed to improve the health outcomes of marginalized populations.2,3 moreover, this state-level lack of awareness also resonates on national scale and among other high-income countries.4 in spite of this, there are an estimated 54,760 chws operating in the u.s. alone.1 given the diversity, breadth, and potential for improved health outcomes, further understanding is needed regarding the nuanced issues encountered by chws at the ground level as well as amplifying the voices of these workers through collaborative methods such as photovoice. as noted by the american public health association, chws fulfill a wide range of unique services that can improve health and social issues outside the realm of the clinic including community outreach, health education/prevention, and advocacy. due to their ability to address wide gaps in health care coverage, especially through addressing social determinants of health, chws are poised to make significant contributions to the u.s. health care system.5,6 in spite of these unique and complementary functions, chws remain largely on the fringes of the health care workforce in indiana and throughout much of the united states.7 as a result, additional studies are needed that elucidate the lived experiences of this workforce – including how they conceptualize their position, specific challenges encountered, and the impacts they make in their communities. these lived experiences provide crucial theoretical insights but also applied implications – especially in terms of informing policy development that seeks to integrate chws into the broader workforce. photovoice is a participatory methodology that pronot a duty but an opportunity: exploring the lived experiences of community health workers in indiana through photovoice ryan i. logan department of anthropology, university of south florida, tampa, florida, usa abstract few studies have conducted photovoice projects to explore themes related to the lived experiences of community health workers (chws). as a relatively unknown segment of the health care workforce in the united states, chws are typically members of the communities they work within and fulfill unique and complementary roles through health education, health prevention, community outreach, and advocacy. this article documents a photovoice project that assessed the strengths, challenges, impacts, and what it means to be a chw in indiana. in this project, chws participated in the method of photovoice in two formal meetings – one to introduce the method and another to analyze the photographs. participants displayed photographs, interpreted these images, and co-constructed their lived experiences. several key themes emerged from discussion of the photographs including: participant descriptions of building individual and character traits, conceptualizations of this position, and how participants connect disparate resources for their clients. themes and findings from this research can be utilized to reach out to potential employers and policy makers regarding the integration of chws into the workforce. overall, this project documents the lived experiences of chws and highlights their voices as they become an accepted member within the broader workforce. correspondence: ryan i. logan, department of anthropology, university of south florida, 4202 e. fowler avenue, soc100, tampa, florida, 33620, usa. tel.: +1.813.974.2138. e-mail: ryanlogan@mail.usf.edu key words: community health workers; photovoice; access to care; health disparities; lived experience; indiana. conflict of interest: the author declares no potential conflict of interest. funding: none. received for publication: 10 september 2018. revision received: 19 november 2018. accepted for publication: 19 november 2018. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright r.i. logan, 2018 licensee pagepress, italy qualitative research in medicine & healthcare 2018; 2:132-144 doi:10.4081/qrmh.2018.7816 [page 132] [qualitative research in medicine & healthcare 2018; 2:7816] qualitative research in medicine & healthcare 2018; volume 2:132-144 no nco mm er cia l u se on ly duces visual data regarding a particular issue or topic that are collected, interpreted, and analyzed by participants.8,9 this method is particularly compelling when used in conjunction with chws due to the intimate knowledge they possess of their communities. this method also provides a means to reconstruct the concept of community through participant interpretation. as a result, participants reflexively address the notion of the community and thereby demonstrate that it is not a monolithic and static construct but rather a dynamic and contested space. several scholars have suggested engaging chws as research partners,10-12 while others have specifically utilized photovoice to explore pertinent grassroots-level issues among these workers.13-15 photovoice served as a lens into the lives of these workers that also enhanced the participants’ role within the project. chws took photographs in response to three prompts and, additionally, co-constructed their interpretations and analyses through group discussion. in this way, photovoice facilitates an active role for participants during the course of the project and analysis of the findings. this method also provides provided a crucial environment in which participants interpreted their images and elevated their voices within the project. this aspect of photovoice was crucial given that data collection traditionally extracts data to be analyzed by the researcher, with little additional input from participants. i conducted this photovoice project in part as a collaborative effort with a small yet burgeoning chw organization. the photovoice project served as one of the methods i utilized in my overarching dissertation project. aside from gaining a deeper understanding of the lived experiences of these participants, this project was timely given that the state government of indiana had recently approved a chw certification and had convened a workgroup of stakeholders to develop legislation regarding this position. as a result, gaining further insights into the lived experiences of these workers was crucial – especially as steps are being taken to develop this position into a more formal component of the health and social services workforce. aside from producing novel, participant-interpreted findings, photovoice also functioned as a method that fosters applied implications through fomenting critical consciousness – especially through the dissemination of these images to raise awareness on the part of the policy makers, medical professionals, and the public. background in spite of a general lack of awareness, chws have been quantitatively demonstrated to improve a variety of health outcomes among marginalized populations.16 these workers have also served as advocates for social justice essentially since their inception.12 although their usage waxed and waned throughout the subsequent decades in the u.s., chws were mentioned by name in the patient protection and affordable care act of 2010 (aca). the aca outlined several potential roles for chws and also acknowledged them as a new member of the health care team (that includes doctors, nurse practitioners, nurses, and other established professions).3 this national level recognition was vital in highlighting the role and unique contribution of the chw model. however, due to a lack of a national policy and framework dedicated setting guidelines and rules regarding the chw model, state governments and various employing organizations have lead the way in terms developing and implementing this position. as a result, chws are utilized at varying capacities and, often, under differing terminologies. several states, such as massachusetts, minnesota and oregon, have well-established chw programs.3,7 minnesota is particularly unique due to its extensive listing of chw-specific services that are reimbursable through medicaid.3 due to these state-by-state variations, their utilization, terminology, specific functions, and experiences at the grassroots level varies greatly. while national recognition in the form of the aca and various state-level policies have sought to integrate chws, they have largely continued to exist on the fringes of the workforce. chw programs faced criticism in the 1980s following the failure of some programs to achieve their desired outcomes. studies reported mixed results related to the outcomes of chw programs and that political and financial factors further negatively impacted them.7 as a result, these issues largely caused the downfall of this model in addition to widespread ambivalence regarding its broader adoption. however, public health studies have demonstrated the quantitative impact of these workers on a variety of health outcomes – particularly chronic disease prevention and management.3,16 furthermore, some public health studies have reported chw programs to be costeffective.16-18 thus, despite mixed results previously experienced by chw programs in the u.s., current public health evidence demonstrates their potential for positive health outcomes and cost-effectiveness.3,16,18 although photovoice is a well-established methodology, few studies have utilized this method to explore various topics related to chws. mayfield-johnson et al.14 conducted a photovoice project with community health advisors (chas) in order to assess changes in feelings of empowerment. their study revealed critical insights into several key themes explored by chas and provided crucial data in further utilizing chas in the workforce. baquero et al.13 discussed the results of using chws to reduce barriers to reproductive and sexual health care. the authors also described how the photographs were used in a community forum to discuss and validate the findings. finally, mitchell et al.15 drew on photovoice to explore hiv/aids in south africa and also as a reflexive method to create a plan of action. in these examples, photovoice served as a versatile methodology that not only enhance the role and voice of the participants but also yielded critical visual data. indiana has lagged behind other states in terms of de [qualitative research in medicine & healthcare 2018; 2:7816] [page 133] article no nco mm er cia l u se on ly veloping and utilizing this workforce. in spite of this, chws have a long history in the state and are employed in various capacities in both health and social service organizations. some chws have as much as 30 years of experience working either as paid and/or as volunteers and have been employed in clinics, hospitals, and/or social service organizations. however, those that are hired are normally paid through short-term, grant-funded positions and thus maintain tenuous employment. this soft funding of chws often results in the position ending after a short period of time and thereby keeps them from formal integration within the broader workforce.7 additionally, there currently are over 60 titles in use which fit underneath the chw umbrella within the state. this myriad of titles creates confusion over their roles and responsibilities in addition to presenting challenges for crafting policy regarding this workforce. the plethora of titles also contributes to the lack of awareness on the part of medical professionals and the public about who are chws and what, exactly, it is that they do. however, there are crucial steps being taken at the grassroots and government levels in indiana. a statewide chw organization formed in 2015 to advocate for the development of this workforce and has made connections with other organizations and the state government. at the time of the photovoice project in 2017, the governor had convened a workgroup to develop policy regarding the chw model. the workgroup drafted and provided recommendations for an official model as well as a set of chwspecific, medicaid reimbursable services. while these are important steps toward legitimizing these workers, the lack of awareness regarding chws, fully utilizing their unique skillset once employed, and ground level challenges persist as lingering issues that hinder their integration. overall, this project served to illuminate the lived experiences of chws – through their active participation in a photovoice project – in addition to producing findings that will raise awareness of this workforce as they gain further acceptance into health and social services organizations. photovoice: method and theoretical orientation photovoice is a participatory methodology that produces visual data – in the form of photographs – and also elevates the involvement of the research participants.8,9,19 specifically, the participants take photographs in relation to a prompt or theme and are involved in the production, selection, interpretation, and analysis of the photographs.8,9,19,20 the analysis phase is particularly important as participants explain and interpret their photographs as well as co-construct meaning through group discussion. as a result of this enhanced involvement, research participants can address issues of representation in photographs through the inclusion of their own interpretations. photovoice has several strengths that set it aside from other forms of qualitative research methods. wang and burris (p. 369)9 describe three crucial strengths as i) empowering community members to record and reflect on their community’s strengths and needs, ii) fostering discussion among the community members about topics stemming from the photographs, and iii) as a means to reach policy makers. additionally, the theoretical orientation of this method fosters discussions that can yield empowerment, action, and social justice regarding the topic of the project.14,20 photovoice is grounded in feminist theory, empowerment education, and critical consciousness.8,14,19,20 these theoretical foci are crucial in framing the method and participants toward fostering critical consciousness that can be operationalized into action. feminist theory provides a framing that emphasizes the lived experience and interpretation from the point of view of the participant, thereby elevating the voice of the participant within the research. this orientation is particularly vital as photovoice provides a lens to showcase the positionality and personal experience of the participant. photovoice also provides an environment that facilitates the co-construction of knowledge through discussions of individual interpretations contrasted with others’ experiences. in this way, photovoice draws on paulo freire’s critical consciousness through empowerment education, in which teachers and students co-create knowledge.14,19,20 through photographs, interpretations, discussions, and the co-construction of knowledge, participants critically analyze social and structural issues related to their experiences. in fostering critical consciousness, participants can foment potential for producing positive social change.14,20 as a result, photovoice serves as a method that collaboratively engages participants, elevates their voice in the research, and can foster policy change and social justice. materials and methods study design photovoice served as a methodological complement to the collaborative anthropology approach that framed the overarching dissertation project. collaborative anthropology, as defined by bade and martinez,21 is an approach that emphasizes developing a long-term and committed relationship with the community partner (e.g., participants, stakeholders) in which the needs of all parties are expressed including that of the partner(s) and researcher(s). in this way, the researcher(s) and participants identify the primary issues to explore in the project and that all parties are involved in the analysis and writeup. like other participatory action research methodologies, collaborative anthropology strives to remove the traditional power dynamic between researcher and participants. a more egalitarian relationship is developed between all parties involved due to the enhanced involvement of participants in the design, process, analysis, and write-up. as a result, photovoice pairs well with [page 134] [qualitative research in medicine & healthcare 2018; 2:7816] article no nco mm er cia l u se on ly this collaborative framework due to its theoretical foundations in feminist theory and empowerment education.9,14,19,20 in order to carry out the photovoice project, i worked with the chw organization’s leadership to collaboratively develop a set of three prompts. these prompts provided critical information regarding the meaning, impacts, and challenges that shape the lived experience of chws in indiana. the formation of the project began in the summer of 2017 and recruitment occurred in august and september. participants attended the first photovoice meeting in october and concluded in a final meeting in december. the university of south florida institutional review board (usf irb) approved this project. per usf irb guidelines, all participants signed an informed consent document as well as a copyright release granting permission for use of their photographs. recruitment and sampling although eight chws were recruited for the project, two were lost to follow-up after the initial meeting. six participants in total completed the project from start to finish (table 1). the recruited participants were from a variety of different organizations. thus time commitment to the project was challenging for many and was the primary reason for the participants lost to follow-up. those recruited for the project were from interested participants from the overarching dissertation project and via wordof-mouth. chws who expressed interest were given a brief explanation of photovoice, its aims, and the overarching project prior to the first official meeting. participants who were still interested were then provided with the date and time of the first formal meeting to discuss the photovoice project. due to the busy schedules of the participants, two formal meetings were held at the partner organization. the first meeting lasted an hour and a half and fully introduced the concept of photovoice, demonstrated several different examples of photovoice projects, discussed ethics and representation in photography, basic photography tips, and introduced the photovoice prompts. as participants utilized their smartphones for the project, they were also given a handout that detailed smartphone camera tips. due to usf irb guidelines, participants were unable to take photographs that contained identifiable individuals. and, as chws operate within the guidelines of the health insurance portability and accountability act (hipaa), participants were encouraged to be creative in their photographs in order to answer the prompts. participants were provided nine weeks to take photographs and i also provided my contact information in case of any questions or concerns. the prompts were broad and sought to capture snapshot of the lived experiences of chws (table 2). the first prompt asked the participants to photograph an image that detailed what being a chw means to them. the second prompt asked participants to capture an image of an impact they have had so far in their work. the final prompt asked the participants to document a challenge that they had overcome as a chw. participants were allowed to take as many photographs as they wanted but to submit only their top one or two images for each prompt for dis [qualitative research in medicine & healthcare 2018; 2:7816] [page 135] article table 1. participant demographic characteristics. demographic characteristics n=6 age average 47 range 20-65 sex male 2 female 4 race/ethnicity white 3 latino/a 3 years as community health worker average 5.93 years range 3 months-30 years level of education high school degree 2 associate’s degree 1 bachelor’s degree 3 table 2. prompts and themes. what does being a chw mean to you? what impact have you had as a chw? what is a challenge you have overcome as a chw? • educating clients • educating clients • becoming extroverted • being present in the community • removing barriers to a healthier life • gaining a sense of self-confidence • advocating for clients • aiding dying patients • paperwork/policies/laws • empowering clients and community • navigating the health care system • overcoming idealized notions of the u.s. • being nonjudgmental • providing access to care • finding resources • being observant • navigating the large pool of resources • not a duty, but an opportunity • clients not qualifying for particular resources chw, community health worker. no nco mm er cia l u se on ly cussion at the final presentation. the participants then gathered for a final meeting in which they discussed and interpreted their images. analysis and documentation the second and final meeting was held nine weeks after the initial photovoice presentation and lasted two hours. the first hour of the meeting included a powerpoint presentation that consisted of a compilation of the participants’ photographs with the author serving only as the discussion facilitator. the photographs were shown first without the accompanying title and caption in order to evoke initial reactions from the other participants. this served as a crucial step in order to allow the other participants time to develop their own interpretation(s) of each photograph. the prompt was then included on-screen and the photographer read their caption, elaborated on their image, and how they felt the photograph served as a response to the prompt. other participants were then given a chance to respond to the photograph and share their thoughts and interpretations. this process was repeated for each photograph and short discussion generally followed. after every participant was given a chance to speak and share their photographs, they were asked a series of questions in order to further interpret, discuss, and summarize the photovoice experience during the second hour. questions included whether or not the photographs and the accompanying captions were similar or different from their own experiences, which photograph(s) stood out the most, and if they would have done anything differently in terms of taking the photographs. one final question was posed to the chws, which asked how they would like to see the photographs used in the future. a lengthy discussion followed in which participants answered these questions. following the conclusion of the second meeting, each participant was also took part in a 1-hour, semi-structured interview to further elaborate on his or her lived experience in relation to the overarching dissertation study. several participants were also shadowed as part of data collection in the form of participant observation. as a point of clarification, the findings detailed in this study come directly from the photovoice project unless otherwise noted. overall, participants had a total time commitment of four and half hours (between the photovoice meetings and semistructured interview) and varied in the amount of time they needed in order to capture the photographs. results thematic analysis: general themes general and specific themes emerged through interpretation, analysis, and co-construction by the participants regarding their lived experiences. general themes were topics shared by a variety of the participants whereas specific themes were unique among each participant. however, these interpretations were not solely offered by each individual participant but built upon and augmented through discussion as well. below, i present the general and specific themes described by participants from the final meeting. in the discussion section, i parse out some further applications and analyses from this project. each prompt generated several main themes detailed in the caption of the photographs and through discussion (table 2). first, there was discussion regarding the general roles of the chw position facilitated by the first prompt. participants collectively identified being observant, serving as an advocate, being present in the community, and educating and empowering clients as the underlying meaning of being a chw. outreach in the community was a common theme throughout and was showcased by a majority of the photographs being taken outdoors. there was also lively discussion during the meeting in which participants described the importance of being nonjudgmental of clients and their living space. rather than see negative aspects, participants described needing to look for the positives in their clients’ life and home, especially as a motivating factor that might lead them to healthier choices and a sense of empowerment. in terms of impact, participants identified a number of themes including health education, improving access to care, removing barriers to care, and navigating the health care system. concepts such as opening doors, removing blindfolds, providing access were terms utilized in discussion around the impact of their work as chws. navigating the health care system was an additional theme that fits within this context of improved access to care. participants discussed that it was not enough to just provide access but also navigation through the complicated process of accessing health care, health insurance, diet change, and/or lifestyle change. furthermore, participants emphasized that the end goal in this relationship to be client empowerment. one participant, who had received special training in performing palliative care assistance, added that her impact as a chw revolved around being with patients who are dying. this was unique even among chws in that she has training to advocate and serve patients who are in the process of dying. lastly, the participants displayed photographs that demonstrated a challenge they have overcome as a chw. several of the shared surmounted challenges could be grouped into personal and work-related challenges. two of the participants discussed how they had overcome personal challenges including a lack of self-confidence and learning to become extroverted. during the discussion, they noted how overcoming these personal challenges was crucial in order to improve their ability to advocate on behalf of their clients and in order to effectively conduct community outreach. in terms of work related challenges, participants described paperwork and operating within legal frameworks such as hipaa. although noting the importance of this law and various privacy policies, these produced challenges [page 136] [qualitative research in medicine & healthcare 2018; 2:7816] article no nco mm er cia l u se on ly such as participants feeling as though they create a barrier in their relationship with their clients in addition to finding resources or advocating on behalf of clients. another common theme discussed was finding and acquiring health and social resources. while noting that indianapolis has a large pool of resources to draw on participants explained the challenging aspect is that clients may or may not qualify for resources, some resources may only dry up due to running out of funding, being unaware that a particular resource exists, or that their client does not qualify due to legal status. finally, the participants also discussed facing challenges in the form of whether or not clients were included within the health care system in addition to their own challenges of being included within the health care workforce. below, i elaborate on several unique themes that emerged during analysis. building individual character traits and skills two of the participants noted how training and working as a chw was vital in building their own character traits and abilities. amanda [all names are pseudonyms], a chw with only four months of experience, captioned her photograph of a turtle swimming in an aquarium as “a challenge i have had to overcome is not hiding in my shell and becoming more confident in myself”. adding to this concept of character growth, several participants also noted how the chw certification course was vital in building skills and character traits crucial to the position in addition to learning how to be observant. this notion was encapsulated by one of isabella’s captions in which, to her, being a chw meant someone who “must have big ears, big eyes, and a very, very small mouth.” although observation skills are an important facet of many medical professional jobs, participants asserted that chws spend more time with the clients and must listen and observe closely to truly understand the (health and social) issues in a client’s life, identify proper resources, find ways to improve health, and, ultimately, empower clients. participants especially noted the need to build character skills to learn about, advocate, and remove barriers for clients deemed noncompliant by medical professionals. their discussion highlights the crucial ability for chws to address social determinants of health as many patients may be labeled as noncompliant yet are unable to adhere to a treatment plan due to transportation, financial burdens, time, or other structural factors. finally, participants also utilized these new skills and enhanced character traits to seek out resources and advocate for their clients. an opportunity, not a duty a principal topic of discussion throughout the presentation consisted of the participants describing the primary function of their work as a chw: as health educators, being present within the community, and advocating for their clients. amanda described how being a chw means “educating the people in our community, helping clients help themselves, and advocating for their needs.” however, the worker portion of the chw acronym might not adequately encapsulate the feelings of those who work in this position. this sentiment was expressed by mark, a chw with four months of experience, who answered all three prompts by creating a collage of photographs and writing a poem as his caption. mark’s poem described his collage in which he articulates that being a chw provides him with an opportunity rather than simply a quotidian job (figure 1). in extrapolating on this conception, mark described how he utilized this opportunity to explore “dimly lit hallways” and to “open closed doors.” he also outlined the possibilities of improving the health of the community through fostering new relationships and bringing hope into the lives of those most in need. mark’s comments provoked discussion among the participants about the uncertainties that occur in outreach but also the possibilities to truly improve the lives and health of individuals and communities. putting the puzzle together building off of the discussion regarding mark’s conception of the position, one participant described the importance of putting together seemingly unconnected pieces of a puzzle in order to find a solution a solution. isabella, a chw with four years of experience, displayed a photograph of a disconcerting scene she encountered one day while on a walk (figure 2). her photograph displays two boots, two toothbrushes, a day planner, and a tube of toothpaste strewn about a patch of grass. in answering how this photograph illustrated a challenge she has overcome as a chw, she explained that an individual’s life might seem complicated and that factors related to their lives may not seem to fit together. however, she emphasized the need to seek solutions and find commonalities between the different issues experienced by the client in order to effectively connect them to appropriate resources. isabella’s comments provoked discussion among the participants who also described the how majority of their days are a puzzle in which they also must draw on their knowledge of the client’s situation and available resources in order to provide effective aid. the participants, invoking her photograph, explained that helping a client might consist of a taking a variety of disparate resources and arranging them in a way to help their client. this was especially true as the participants described a wide availability of resources but that these were siloed. they described having to seek out various resources in their communities and/or had learned about resources that had not previously known about through word-of-mouth. their discussion highlighted the essential component of chws serving as a knowledge base and resource connector for individuals and the community. [qualitative research in medicine & healthcare 2018; 2:7816] [page 137] article no nco mm er cia l u se on ly providing access and jumping into the u.s. health care system a primary concern of the participants was the complexity of the u.s. health care system for their clients. leticia, a chw with more than thirty years of experience, displayed her photograph showing an individual at the banks of a large body of water. she visualized the u.s. health care system as a powerful river and pictured the client without knowing how to swim or possessing any tools to cross this treacherous water (figure 3). leticia described her impact as “helping patients know how to [page 138] [qualitative research in medicine & healthcare 2018; 2:7816] article figure 1. “each of these doors, stairs, and halls have afforded me an opportunity…to meet a neighbor in need, in need of something, something that is always different, different but enlightening. regardless of who is behind that door, up those stairs, or down that hall, these doors, stairs, and halls are thresholds to new relationships, steps to stronger communities, and paths to healthier neighbors. being a community health worker is not a duty, it is an opportunity to open closed doors, lift people to new heights, and brighten dimly lit halls – just like these doors, stairs, and halls have afforded me an opportunity…”. figure 2. prompt: what is a challenge you have overcome as a community health worker? “many times, you may be apprehensive about what you see and doubt whether or not you have the ability to help put the puzzle pieces together.” figure 3. prompt: what impact have you had as a community health worker? “helping patients know how to jump into the health care system.” no nco mm er cia l u se on ly jump into the health care system.” the other participants discussed their critical role as providing access to care and educating clients on their options or where to go to seek specialized help. however, participants stressed that it was not simply enough to provide access but to maintain support and navigation. they described helping clients explore health insurance options (and, if trained as an aca navigator, help them sign up), calling clinics to schedule appointments with clients, going with clients to doctor’s appointments, accessing public transportation, and providing ways to adjust diet and exercise. these services also underscored the need to teach and empower clients to take control once they had received help navigating the health care system and to take control of the next steps in their treatment plan. leticia, who works predominantly within the latino community, also emphasized specific challenges experienced by this population – especially for those who are undocumented. she described serving latino immigrants in educating them on how to use the u.s. health care system since it was much different from the health care systems in their home countries. other participants noted how other client populations, including low-income and homeless, also face similar challenges in accessing and receiving care. ultimately, participants asserted that simply providing access was not enough and that continued support and navigation within the health care system was crucial. overcoming idealized notions following discussion of the difficulties that the most vulnerable populations encounter was discussion of how these issues contrast with idealized beliefs regarding the united states. this was specifically expressed by leticia who described how the united states is idealized as the “land of plenty” yet there are significant portions of its population that require assistance. leticia stated that she had to “overcome[ing] the idea that the land of opportunity is for everyone” (figure 4). participants found this image and description to be particularly profound yet unsurprising. as chws, the participants felt a connection to this image since they must be well aware of the available resources in their communities in order to connect clients to them. however, they discussed how clients from all different backgrounds may have trouble accessing these resources or were disqualified due to legal status, specific income requirement(s), and/or their geographic residence. this discussion of resources available in indianapolis, the state, and in the u.s. also brought about topics relating to how the health care system is disjointed and difficult for clients to access. moreover, extrapolating on how she has struggled to overcome viewing the u.s. as the “land of opportunity,” leticia related a story of the immigrant experience: i mean there’s that belief when they first arrive that this is the land of opportunity and they’re going to help me and then you realize “well, you’re not documented so we can’t really help you.” and when you have kids or people that are adults that are suicidal, while you can take them in for an assessment anywhere, you can do the assessment but then there’s no treatment because they don’t qualify. to me that’s…it’s hard to overcome that idea… in pairing this story with her photovoice, leticia provided a poignant vignette to other participants who did not work with immigrant populations – serving as one example of the empowerment education approach facilitated by photovoice. despite these crestfallen sentiments, the participants still were motivated through their work and reiterated their perseverance to remain cognizant of the resources and empower clients to improve their lives. community health worker recommendations a primary focus of the photovoice methodology is not only enhancing the voice of the participants but also including the participants’ vision for how the data should be utilized. following the presentation and discussion of the photographs, the participants were asked how they would like to see their photographs used. mark expressed that he would like to see the photographs utilized in anyway possible that might help other chws and the position itself gain more awareness. leticia suggested that the photographs be used in presentations given to medical professionals, potential employers, and policy makers. she further suggested having “lunch and learn” sessions in which members of the organization could showcase the [qualitative research in medicine & healthcare 2018; 2:7816] [page 139] article figure 4. prompt: what is a challenge you have overcome as a community health worker? “overcoming the idea that the land of opportunity is for everyone.” no nco mm er cia l u se on ly position and use the photographs within the presentation. she stated “we show them these photographs and tell them from a medical perspective ‘what do you see behind those doors, or how would you find out what happened in this scenario?’ and kind of begin to explain to them that a chw may have an insight that is different.” in this way, both issues of spreading awareness and demonstrating to employers how these workers can fit within their organization as an employee could be addressed. one of the participants, dean, suggested creating a chw calendar with these photographs. the calendar could serve as a fundraising item for the organization or could be distributed during presentations. the participants were also interested in having their photographs included on the organization’s website along with a story about their photograph. in this way, participants were keen on making an applied impact from their participation in this project. discussion photovoice served as a method that illuminated the lived experiences of chws. as other studies quantitatively demonstrate the how these workers can impact the health of clients,16 photovoice reveals the nuances and intimate details at the grass-roots level. several studies have previously utilized photovoice to explore a variety of topics with these workers.13-15 these studies demonstrate that photovoice can be used to effectively showcase, understand, and analyze these issues and can also be used to produce data that fosters critical consciousness and to provoke social change. given that individuals who may be unaware of the complex landscape navigated by chws often craft policy regarding these workers, further understanding of their unique experiences is vital when developing policy. this method also provides an outlet for chws to illuminate personal experiences, showcase these to their peers, co-construct meaning, and put their findings into action. the themes that emerged during this project also contribute to current conversations on the topic of chws. in their report on the voice of chws, citizens’ right to health, and power, schaaf et al.22 explore issues and challenges impacting these workers in the u.s. and abroad.22 particularly, schaaf et al.22 explore the theme of accountability and assert that chws are well placed to be agents of downward accountability, that is, assuring fulfilling the accountability of the health system to all people.22 as with chws throughout the world, the participants in this study drew on their connections to their communities in order to promote health and social wellbeing. furthermore, participants noted working with a variety of organizations and stakeholders in the pursuit of improving the lives of the clients. they note the variety of actors – including the state and other stakeholders (community, ngos, other organizations) – that impact the roles and utilization of chws.22 these authors state that understanding chw accountability to stakeholders and community is vital. additionally, understanding the barriers and issues on the ground will help employers empower their chw employees who can then more effectively serve their communities and clients. emergent themes from this project highlight the downward accountability that participants had to their communities in addition to seeking ways to facilitate the provision of resources to their clients. this photovoice project also provided participants with an opportunity to explore several themes related to their lived experiences. policy makers, researchers, and other stakeholders must be cognizant of the lived experiences of chws when implementing interventions or developing policy. since the state government of indiana has already begun work to integrate chws into the broader workforce, the findings from this project can be used to reach a wider audience in order to demonstrate the utility of these workers throughout the state. the photovoice prompts, although broadly related the successes, challenges, and impacts, provided a creative means for participants to answer them. as a result, the participants in this project provided unique insights to their character development and key roles of this underutilized workforce fulfill within their communities. the photographs and findings from the discussions can be used in upcoming presentations with stakeholders including policy makers and potential employers as a means to demonstrate the responsibilities as chw can perform if employed. finally, participants identified specific challenges for policy makers and stakeholders to consider including disjointed resources, issues in the u.s. health care system, whether or not clients qualify for resources, and strategies to solving these complicated situations. legitimacy of community health workers in the workforce in indiana, where chws continue to operate on the fringes of the health care workforce, educating stakeholders is crucial for enhancing their integration within the formal the health care environment. medical citizenship is a theoretical lens that describes the belongingness of a group or individual(s) within a health care system.23,24 this also includes conceptions of who is deemed deserving of care, including those who have access to health resources.23,25,26 this is a useful framework to assess not only the inclusion and/or exclusion of chws within the health care system but also the communities they serve as well. nading24 employed medical citizenship in his research with brigadistas, a term for chws in nicaragua. he argues that brigadistas are at once professionals that instruct community members in ideal, healthy behaviors while at the same time serve as caring advocates for their communities. in exploring this duality of belonging, nading (pp. 97-98)24 asserts that brigadistas must “balance two contradictory forms of medical citizenship, one disciplinary and bureaucratic, the other compassionate and flexible.” this is true of chws in indiana as they navigate be[page 140] [qualitative research in medicine & healthcare 2018; 2:7816] article no nco mm er cia l u se on ly tween citizenship within their communities and the professional workforce. leticia’s photographs (figures 3 and 4) and vignette specifically highlighted the lack of inclusion faced by her clients within the u.s. health care system. in the semi-structured interviews, participants noted how the communities they work within – especially immigrant communities – were restricted from medical care and thus deemed undeserving and without medical citizenship. additionally, for chws themselves, lacking medical citizenship within the professional community could stymie the provision of care and resources provided by these workers. other scholars have described how chws encounter this tension within their work environment.27,28 these scholars describe how these workers are in a position in which they must advocate not only for their community but for their job as well.27,28 moreover, as chws are typically members of their communities, they face the same structural issues as their clients.22,27,28 sabo et al.28 argue that the same structural inequality that hinders the individuals in their community from upward social mobility also impedes professional mobility for these workers. in this way, chws are only partly belonging within the health care workforce and share many of the same structural vulnerabilities as their community members. additionally, several participants described in the semi-structured interviews as being seen with suspicion and apprehension by medical professionals thereby underscoring their lack of medical citizenship within this workforce. this highlights the precarity of the dual medical citizenship navigated by chws in indiana – much as described by nading.24 although there has been ostensible federal support for the inclusion of chws, the position itself is typically excluded as an additional member of the health care team.12 in spite of this, other scholars have noted the potential for chws to be included as a distinct member of the health care team.5,16 acquiring formal inclusion within the workforce is especially important as chws in indiana are funded through soft-money and their positions wax and wane depending on grant funding. this photovoice project was vital in demonstrating the nuances of the roles fulfilled by chws and showcasing their lived experience. community health worker belongingness and client deservingness within the nation-state leticia’s photograph (figure 4) showcases how she now views popular conceptions regarding the united states in a more nuanced manner. this is true to of how her clients, who are mostly latino immigrants, have to reconcile with the fact that opportunity and health services may be relatively cut off from them. while the chws in this sample served a diverse range of racial and ethnic backgrounds, understanding the relationship of these workers to the nation-state is a crucial finding of this study. this lack of belongingness was seen in leticia’s photograph about the united states, which left her and her broader community feeling excluded from the health care system. leticia’s comments and discussion relating to latino health reiterated the difficulties of both documented and undocumented immigrants in the u.s. health care system – especially as scholars have argued that immigration itself be viewed as a social determinant of health.29,30 the concept of health-related deservingness is useful and can be described as the moral, economic, and political sentiments that mandate whether or not a population is worthy of care.25,26 language barriers, legal status, financial barriers, and political sentiments have and continue to mark immigrant populations as undeserving of care. these concepts can also be applied to other minority groups, low-income, and/or homeless populations who also faced politicized notions about their deservingness of health resources. leticia’s photograph and the resulting discussion again invoke the vulnerabilities faced by the communities served by chws in this project yet also the potential for advocacy and health education as a means to circumvent these issues. increasing access to resource and health services several of the emergent themes from this project, including putting the puzzle pieces together and providing access to care and jumping into the u.s. health care system, demonstrate how participants navigate the complex economy of resources within indiana in order to provide access to health and social services. participants described empowering their clients and communities as a key part of their work. as members of their respective communities, these workers have an intimate knowledge of the structural barriers and health disparities of their clients. chws connect their clients to resources, educate clients on a variety of topics, and advocate and empower clients to take control of their health. participants in this project also noted the variety of resources available yet lack of awareness or education on part of the client hindered their usage. participants also noted how they served to advocate for their clients as well as empower them to overcome social determinants of health. addressing the social determinants of health is a vital step toward breaking down health disparities and leading toward improved health equity. finally, steps to integrate these workers must include establishing permanent positions in the workforce rather than continuing to employ them through soft-money. this will serve as a means to increase the amount of stable chw jobs. community health workers’ understandings of their position another unique insight from this project relates to how the participants described their own conception of the position and how undergoing the certification course impacted their personal character. mark’s notion of conceptualizing the chw position as an opportunity rather than a duty underscores his deep and personal impetus behind his reasoning for participating in this job. other participants described how the certification course [qualitative research in medicine & healthcare 2018; 2:7816] [page 141] article no nco mm er cia l u se on ly pushed them to further develop their own personal character traits. this was noted through character traits identified in the course as being extroverted and possessing a willingness to advocate for clients and the community. this part of their lived experience is essential to highlight as it inserts the voice of the chw into the literature and discussion regarding the development and direction of their position. previous scholarship has documented the potential for this position to lose its unique contributions by becoming over-medicalized, narrowly defining the roles of the position, and/or not including chws in discussions regarding its development.12 thus, as legislators and stakeholders continue to write policy and approve certification, understanding how these workers view their position and how, in turn, the position shapes their personal characteristics is vital in retaining the essence of the work when developing policy. community health workers as natural researchers this project also highlighted the roles that chws can play in conducting projects with academic researchers. as noted in the literature, these workers have the potential to contribute to studies and research carried out in conjunction with health researchers.10-12 pérez and martinez12 label chws as natural researchers due to their close connection with their community and their ability to suggest solutions to address community issues. these close connections offered by chws have the potential to be collaborators on health programs and can enhance the effectiveness of these programs. pérez and martinez (p. 11)12 argue that these workers “can observe and relay community realities to outsiders – placing them in a position to influence policy that affect public health.” the participants in this project demonstrated their close connection to their communities in addition to their knowledge related to the health issues, social determinants of health, and resources available. as a result, these workers have the potential to dramatically affect health programs, policy, and research. additionally, the governor’s workgroup in indiana has included “evaluation and research skills” as a core competency of chws, which asserts their ability to aid in research projects. this further strengthens their potential role in research and policy development. implications for potential employers and integration of community health workers there are several implications that arise from this project in documenting the lived experiences of chws. as public health scholarship has quantitatively demonstrated positive health outcomes utilizing chw interventions as well as cost-effectiveness,16,18 these workers may have significant impacts on the health care landscape of the u.s. leticia, mark, and isabella specifically demonstrated their roles as connectors between health/social services and their clients as well as their extensive outreach (figures 1-3). by taking into account their lived experiences, public health programs can better tailor health interventions and outreach initiatives. in addition, learning about the specific issues that chws encounter on the ground and how they have successfully navigated these challenges will better inform these programs. however, it is crucial to note that these workers should not be seen as a single solution to attaining health equity. colvin and swartz29 assert that chws should be supported internally but should not shoulder the burden of fixing a broken health system. instead, chws can improve access to care, reduce cost and readmission, and improve health equity for their clients.29 overarching systemic change must come from elsewhere, with chws as supporting actors. limitations and future research there are several limitations to this research project. while the sample size was small (n=6), it touched on some prevalent issues related to the lived experiences of chws in indiana. although the original sample size was eight individuals, two participants were lost to followup after the initial meeting due to time constraints. wang8 recommends between 7-10 participants for a photovoice project. due to the small sample size, data was augmented through the use of semi-structured interviews and participant observation to further elaborate on the themes discussed in the photovoice project. aside from the small sample, recruitment was also difficult. chws work within the same legal boundaries as medical professionals and thus taking photographs may have posed too great a difficulty for some. also, the time constraints of the participants made it difficult to meet more than twice. additional meetings would have allowed for a deeper analysis of the photographs and experiences of the participants. moreover, additional prompts may help fill in gaps regarding negative experiences encountered by chws. although the majority in this study described positive experiences, larger sample sizes and at least one prompt about negative, challenges, or criticisms may help parse out additional nuances regarding the lived experiences of chws. another limitation included that, at the time of the publication, the organization was still developing presentations and materials from the findings of this research. given the organization’s small staff and busy work schedules, implementing the findings through the recommendations remains to be seen. a final limitation (and consideration for future research) should assess the power dynamics between chws and their clients. the u.s. health care system and by extension, chws, are impacted by neoliberalism and its impact on health and individual responsibility. while these workers seek to empower their clients through an emphasis on eventual self-sufficiency, these workers also attempt to manipulate and change the system to the benefit of their clients through participation in advocacy. an ex[page 142] [qualitative research in medicine & healthcare 2018; 2:7816] article no nco mm er cia l u se on ly ploration of the power dynamics between chws and clients was not specifically explored throughout the context of this project but future studies should further assess this relationship and the impact of the neoliberalism on the chw model. future research should arrange a photovoice project with chws tackling a particular health issue. these future studies might examine the health impact of chw interventions aiming to reduce a1c levels, enhance nutrition, or an exercise program with a particular population. these studies could also conduct a joint chw/client photovoice project to fully explore relevant issues related to these programs. lastly, future studies should consider recruiting chws who all work in the same agency as a means to improve loss-to-follow up as they will be centrally located and could more easily attend meetings and continue the project to completion. conclusions this project explored the nuances of the lives and work of chws in indiana through the method of photovoice. specifically, their photographs served as a lens to explore how participants conceptualized their work, the challenges they have overcome, and the impact they have had on their communities. this method and, specifically, its participatory approach and theoretical framing, serves as a mechanism to elevate the voice of the participants the project and foster critical consciousness. through the sharing of photographs and interpretations, participants co-constructed their lived experiences as chws. as a community themselves, participants found meaning not only in the lived experiences but also through offering suggestions for how these findings can potentially improve their communities and professional livelihoods. ultimately, the participants and their findings offer not only insight into their lived experiences and unique contributions to the health care landscape but also data that can generate social change. references 1. bureau of labor statistics. occupational employment and wages, may 2017. 21-1094 community health workers. 2017. available from https://www.bls.gov/oes/current/oes 211094.htm 2. ingram m, reinschmidt km, schachter ka, et al. establishing a professional profile of community health workers: results from a national study of roles, activities and training. j community health 2012;37:529-37. 3. rosenthal el, brownstein jl, rush ch, et al. community health workers: part of the solution. health aff 2010;29: 1338-42. 4. najafizada am, bourgeault il, labonte r, et al. community health workers in canada and other high-income countries: a scoping review and research gaps. can j public health 2015;106:e157-64. 5. balcazar hg, rosenthal el, brownstein jn, et al. community health workers can be a public health force for change in the united states: three actions for a new paradigm. am j public health 2011;101:2199-203. 6. london k, damio g, ferrazo m, et al. addressing social determinants of health through community health workers: a call to action. policy brief. hispanic health council. 2018. available from http://hispanichealthcouncil.org/images/ brief2018.pdf 7. kangovi s, grande d, trinh-shevrin c. from rhetoric to reality – community health workers in post-reform u.s. health care. new engl j med 2015;372:2277-9. 8. wang c. photovoice: a participatory action research strategy applied to women’s health. j women’s health 1999;8:185-92. 9. wang c, burris ma. photovoice: concept, methodology, and use for participatory needs assessment. health educ behav 1997;24:369-87. 10. johnson cm, sharkey jr, dean wr, et al. promotoras as research partners to engage health disparity communities. j acad nutr diet 2013;113:638-42. 11. nebeker c, kalichman m, talavera a, elder j. training in research ethics and standards for community health workers and promotores engaged in latino health research. hastings center report 2015;45:20-7. 12. pérez lm, martinez j. community health workers: social justice and policy advocates for community health and wellbeing. am j public health 2008;98:11-4. 13. baquero b, goldman sn, simán f, et al. mi cuerpo, nuestro responsabilidad: using photovoice to describe the assets and barriers to sexual and reproductive health among latinos. j health dispar res pract 2014;7:65-83. 14. mayfield-johnson s, rachal jr, butler j. when we learn better, we do better: describing changes in empowerment through photovoice among community health advisors in a breast and cervical cancer health promotion program in mississippi and alabama. adult educ q 2014;64:91-109. 15. mitchell c, delange n, moletsane r, et al. giving a face to hiv and aids: on the uses of photo-voice by teachers and community health care workers working with youth in rural south africa. qual res psychol 2005;2:257-70. 16. allen jk, himmelfarb cr, szanton sl, frick kd. cost-effectiveness of nurse practitioner/community health worker care to reduce cardiovascular health disparities. j cardiovasc nur 2014;29:308-14. 17. arvey sr, fernandez me, larue dm, bartholomew lk. when promotoras and technology meet: a qualitative analysis of promotoras’ use of small media to increase cancer screening among south texas latinos. health educ behav 2012;39:352-63. 18. cross-barnet c, ruiz s, skillman m, et al. higher quality at lower cost: community health worker interventions in the health care innovation awards. j health dispar res pract 2018;11:150-64. 19. carlson ed, engebretson j, chamberlain rm. photovoice as a social process of critical consciousness. qual health res 2006;16:836-52. 20. langhout rd. photovoice as methodology in: schenker mb, castañeda x, rodriguez-lainz a, eds. migration and health: a research methods handbook. oakland: university of california press; 2014. pp 327-342. 21. bade b, martinez k. full circle: the method of collaborative anthropology for regional and transnational research. in: schenker mb, castañeda x, rodriguez-lainz a, eds. [qualitative research in medicine & healthcare 2018; 2:7816] [page 143] article no nco mm er cia l u se on ly migration and health: a research methods handbook. oakland: university of california press; 2014. pp 306-326. 22. schaaf m, warthin c, manning a, topp s. report on the ‘think-in’ on community health worker voice, power, and citizens’ right to health. 2018. available from http://accountabilityresearch.org/web/wp-content/uploads/2018/01/learning_exchange_report3_january-18-1.19.18.pdf 23. nichter m. global health: why cultural perceptions, social representations, and biopolitics matter. tucson: university of arizona press; 2008. 24. nading a. love isn’t there in your stomach: a moral economy of medical citizenship among nicaraguan community health workers. med anthropol q 2013;27:84-102. 25. goldade k. health is hard here or health for all? the politics of blame, gender, and health care for undocumented nicaraguan immigrants in costa rica. med anthropol q 2009;23:483-503. 26. horton s. different subjects: the health care system’s participation in the differential construction of the cultural citizenship of cuban refugees and mexican immigrants. med anthropol q 2004;18:472-89. 27. closser s. pakistan’s lady health worker labor movement and the moral economy of heroism. ann anthropol prac 2015;39:16-28. 28. sabo s, wennerstrom a, phillips d, et al. community health worker professional advocacy. j ambul care manage 2015;38:225-35. 29. colvin cj, swartz a. extension agents or agents of change? community health workers and the politics of care work in postapartheid south africa. ann anthropol prac 2015;39: 29-41. 30. castañeda h, holmes sm, madrigal ds, et al. immigration as a social determinant of health. annu rev public health 2015;36:375-92. [page 144] [qualitative research in medicine & healthcare 2018; 2:7816] article no nco mm er cia l u se on ly layout 1 introduction “problems? they’ll take care of them on their own” “on an early morning in february, i woke up to about two feet of snow, which had fallen during an overnight storm. i struggled to shovel my way out of the house and get a taxi to a meeting regarding a new opioid prescription law, chapter 488 legislation passed by the maine legislature during the 127th session (2016), entitled, prevent opiate abuse by strengthening the controlled substances prescription monitoring program.1 it was the first legislative effort in maine to address the opioid crisis. during a break in the meeting about chapter 488, i was reminded of an opioid use disorder story told to be me by dr. smith, a primary care physician (pcp), about one of his clients. like many down east fishermen, his client, dominic, injured himself several times during his work. never having time to fully heal, dominic’s injuries turned into chronic condition with severe back pain. not able to afford time off, dominic went to his pcp and received a prescription for one of the extended release opioids. his pain was relieved, and he was able to work again. the opioid medication was intended to be a temporary solution enabling dominic to continue work. yet when the summer season ended, the lobsterman was still using opioids, potentially even more than at the beginning. when the pcp discharged him from his medical practice, the lobsterman was already dean ethnographic study of opioid use disorder in rural maine: the problem of pain weronika grabowska,1,3 selma holden,2 peter m. wayne,1 karen kilgore4 1osher center for integrative medicine, harvard medical school and brigham and women’s hospital, boston, ma; 2university of new england, college of osteopathic medicine, biddeford, me; 3college of the atlantic, bar harbor, me; 4school of special education, school psychology and early childhood studies, university of florida, fl, united states of america abstract this qualitative study was conducted to more fully understand health care providers and community leaders’ perceptions of the opioid crisis in rural maine. in 2017, maine continued to have one of the highest opioid overdose death rates in the country, more than double the national average. i (first author) visited eight treatment centers in maine providing support and treatment to people recovering form opioid use disorder (oud), shadowing health care providers. i also attended oud-related meetings held with community leaders. i conducted a total of 33 semi-structured interviews with health care providers, community leaders, and ngos in the state of maine. three themes emerged integrating observations with semi-structured interviews: i) impact of emergence of new extended release opioids, their prescription patterns, and culture around them; ii) subjectivity of pain and importance of understanding psychic injury in oud treatment; iii) socio-political context and perception of oud in maine. our society’s perception of pain has deep historical and cultural sources that influence the way that pain has been perceived and treated in the medical setting. resources beyond the medical environment are needed to address pain adequately. correspondence: weronika grabowska, osher center for integrative medicine, harvard medical school and brigham and women’s hospital, 900 commonwealth ave, boston 02215, ma. tel.: 617-732-6271; fax: 617-731-3843. e-mail: wgrabowska@coa.edu key words: opioid use disorder (oud); rural health; ethnography. acknowledgements: special acknowledgement to netta van villet, phd, the director of the undergraduate senior thesis research, on which the publication is based. contributions: wg: research design, data collection and analysis, main manuscript author; sh: research design, analysis consultation and manuscript editor; kk: manuscript co-author; pmw: manuscript co-author. conflict of interest: the authors declare no conflict of interest. funding: this project has been supported by rothschild fund for thesis research at the college of the atlantic, and national institute grant k24at009282 to pw. disclaimer: we recognize that use of stigmatizing language can further propagate stigma associated with substance use disorder, while the use of non-stigmatizing language is crucial to combat such stigma. therefore, in this paper, we refrained from the use of words such as “addiction,” “addicts” etc. whenever possible, replacing them with non-stigmatizing terminology. all names used in the text are pseudonyms. received for publication: 12 june 2020. accepted for publication: 8 december 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:132-145 doi:10.4081/qrmh.2020.9175 [page 132] [qualitative research in medicine & healthcare 2020; 4:9175] qualitative research in medicine & healthcare 2020; volume 4:132-145 no nco mm er cia l u se on ly pendent and needed to find a substitute. driven by horrific withdrawal symptoms, he initiated a search for other, often illicit opioids. dominic entered the practice of this provider after a long journey involving the criminal justice system. i wondered why dominic had not asked for medical help for his symptoms sooner. later, dr. smith noted, that, “mainers are proud people who don’t like to ask for help. a lobsterman? that is probably the most ‘maine’ you can get. they don’t want to talk about their feelings.” (field notes, 2017) unfortunately, dominic’s situation is not unique. the problem of opioid use disorder (oud) in maine is complex, embedded in a socio-historical context that defies quick or simple solutions. maine, a predominantly rural state, relies heavily on seasonal manual labor in the fishing and lumber industries along with tourist-oriented services, crucial to its economy. despite decent wages, many maine residents are required to work several jobs during the summer to save money for the rest of the year. the intense summer season is followed by a long, dark winter, often accompanied by feeling of isolation caused by scarce social life in its small, scattered towns. according to dr. smith, dominic did not have a steady income, and the misuse of opioid medication may have developed, in part, from a difficult social, economic, and geographic context. other researchers exploring the phenomena of oud in rural areas have also described socio-economic vulnerabilities that diminish the ability of people with oud to seek treatment, particularly among those with low educational attainment, no health insurance, and low incomes.1-3 the purpose of this study was to explore the ecological perceptions of oud among community leaders and health care providers in rural maine. the larger context: the national opioid epidemic opioid consumption has become a national crisis with opioid related deaths rising by 200 percent between 2000 and 2015.4 since the early 2000s, the u.s. public health services has noted an increase in use of opioid prescription medication (opm). the center for disease control (cdc) and the national institute on drug abuse (nida) recognized the problem and urged implementation of policies restricting use of.5 significant changes in opioid prescription and drug poisoning patterns took place in the united states between late 1980 and 2015, according to cdc data.6,7 in the 1980s, pharmaceutical companies developed new, refined formulations of extended-release (er) opioids, thereby, changing “opioid-phobic” attitudes in the medical field at that time.8,9 pharmaceutical companies provided evidence from multiple studies suggesting that medications such as oxycontin or hydrocodone, used over an extended period of time, could effectively alleviate chronic pain and allow people to regain function.10 furthermore, the studies indicated that er opioids were unlikely to cause development of tolerance or dependance, allowing manufacturers to advertise them as less addictive.3,9 later, the pharmaceutical companies manufactured opioids with abuse-deterrent formulations (adf), intended to prevent people from crushing, snorting, and injecting er opioids3 and thereby, to prevent abuse of the new generation of opioid medication. in practice, however, the intended value of these modifications proved to be ineffective as rates of oud rose and patients suggested that their oud often began with prescription medications, despite adf technologies.11 oud in the rural state of maine in recent years, maine has had one of the highest national use of opioid dosage in morphine equivalent per capita (798mg/person).12 the state has also ranked among highest in use of er opms in the country.12 in the early 2010’s, the increased prescription and use of opioids resulted in quickly growing numbers of opioid overdoses. between 2011 and 2014, maine observed a 34% increase in the number of all drug related overdoses and a 340% increase in illicit drug-related overdose deaths.13 during the same period, the number of oxycodone related deaths averaged 41 per year, while heroin related deaths increased 5.4-fold and fentanyl related deaths increased 3.8fold.13 in maine, as in many other states, males and females aged 25 to 54 were consistently the group with the highest proportion of overdoses.13 although maine reported a decline in both opioid prescriptions and prescription-related deaths, in 2017, maine continued to have one of the highest opioid overdose death rates in the country (29.9 per 100,000); more than double the national average of 14.6 per 100,000.14 in 2017 alone, 278 out of 360 overdoses involved synthetic opioids, mainly fentanyl.14 some evidence suggests that maine’s oud crisis could be influenced, in part, by contextual factors specific to rural areas. rural areas vulnerability to oud based on national mortality database, between 2006 and 2015, drug overdose mortality rates were higher in rural areas, including new england, compared to urban areas.15 in maine, similar to other predominantly rural states, the oud crisis has been exacerbated by a set of circumstances characteristic to remote, nonmetro areas. communities outside of metropolitan areas with low median household incomes and high unemployment rates have elevated opioid prescribing rates, suggesting that economic factors are important in fueling oud.16 over the last decade, rural areas experienced a decline in high paying jobs, which resulted in increased levels of hopelessness and lack of control among their inhabitants.17,18 many rural areas have higher rates of manual labor, exposing workers to higher risk of physical injury and [qualitative research in medicine & healthcare 2020; 4:9175] [page 133] article no nco mm er cia l u se on ly chronic pain. historically, these regions have a longstanding acceptance of opioid use among workers who rely on pain medications to manage pain and continue working self-management.18 people struggling with oud, residing in rural areas, often face problems regarding availability, acceptability, and accessibility of adequate oud treatments. rural areas often have a lesser number and density of specialized clinics and detox centers, offer less concurrent psychosocial services, and have limited numbers of providers.2,19,20 moreover, rural areas struggle with providers’ retention due to lower salaries, limited opportunity for continued education, longer hours, and few resources supporting their work, including funding for medication-assisted treatment (mat).17 consequently, less than 10% of us providers with suboxone waivers practice in rural areas.19 rural area providers are more likely to support abstinence only recovery, further limiting access to mat.17 joudrey et al. (2019) showed that the daily drive time to methadone clinic in rural areas increased on average by 30 minutes compared to micropolitan areas.20 barriers of distance and time are further exacerbated by the scarcity of public transportation, a factor typical of maine.2 limited access, availability, and acceptability of treatment can lead to inconsistent and discontinued care, increasing chances for relapse.21 rural contexts also impact social networks. people with oud in rural areas tend to become members of social groups with fixed social identities. these distinct micro-social environments enable copying and spreading of drug seeking behaviors and quicker diffusion of illicit prescription opioids among the members,18,22 making them more vulnerable to oud. tightly interconnected social environments also heighten users’ perceptions of stigma, preventing groups of users from seeking help during overdose or participating in harm reduction programs.22 moreover, stigma present in the community can lead to a significant discrimination and exclusion of people labeled as “addicts,” affecting their social status, employment prospects, criminal justice encounters, and access to health care.22 rural social networks introduce a paradox, where, on one hand, strong social connectedness can provide support needed in recovery, while on the other, it can increase the spread of negative behaviors and heighten stigma and exclusion. purpose and research questions the aim of this study was to understand the perspectives of local community leaders and health care providers regarding oud in rural maine. in their everyday work, health care providers and community leaders negotiate treatment recommendations, policy, funding to provide their patients with the best standard of care. through inperson interviews, the following open-ended, guiding questions were posed to direct data collection and analysis: i) what are the perceptions of community leaders and health care professionals regarding the development and progression of oud in maine? ii) what are the perceptions of community leaders and health care professionals regarding strategies for responding to the opioid problem? additional probing questions included: interviewees’ professional and personal experiences with the opioid epidemic; their views on the current state of treatment and other resources offered to people with oud, their availability and effectiveness; common stories of oud development; identification of the biggest challenges oud posed to individuals and the larger maine community; their views on the historical and current approaches to combat oud (appendix). materials and methods to discern the perceptions of community leaders and health care providers, i (first author) conducted an ethnographic field study, collecting field notes, facilitating qualitative, semi-structured interviews, and informal interviews in the field. ethnographies, rooted in anthropological methods, were designed to capture a holistic picture of how participants structure and interpret their lived experiences. the study was designed to capture participants’ understandings of the complexity of the problem and uncover the health care challenges related to oud treatment through in-depth understanding of the problem.23,24 data collection participant observations during this study, i visited eight different treatment centers providing support and treatment to people recovering from oud to shadow medical practitioners or observe group therapy, to better understand the oud problem in its socio-cultural context and too learn about types of oud treatments and their accessibility. prior to conducting observations, i contacted each site and asked the practicing providers for permission to observe. research objectives were revealed to the clients and their consents were sought prior to conducting observations. field notes field notes were used to document observations and record my reflections on events during participant observations, including the flow of the sessions and conversations. i did not address the clients directly nor interfere with the providers, unless either of them addressed me directly. during some of the individual sessions, clients were encouraged by the providers to share their stories of oud. to protect the privacy of the clients, these stories are not shared in any publicly available materials. these accounts, however, informed the process of data analysis. the methods employed in participant observation allow the researcher to ask questions as they emerge in the natural context under study. the researcher becomes the instrument, responding unobtrusively, asking participants [page 134] [qualitative research in medicine & healthcare 2020; 4:9175] article no nco mm er cia l u se on ly about their lived experiences and noting interactions among participants in their naturally occurring setting.23,24 the responses to these informal questions and observed interaction were recorded in field notes. each shadowing session was conducted in full hipaa compliance and in adherence to privacy requirements of each individual clinic and recovery center. no identifiable information was recorded or shared. the names of majority of interviewees and all their recalled clients were replaced by fictional names. all notes and transcripts were de-identified to protect participants’ anonymity. this research has been approved by the institutional review board at the college of the atlantic. semi-structured interviews semi-structured interviews were conducted with representatives of medical professionals, counselors, therapists, community leaders, law enforcement, and ngos in the state of maine, using purposive sampling to identify and recruit interviewees with significant experience related to substance use. generalizability is not an aim of qualitative research, and does not require a sample representative of a larger population. purposeful sampling is intended to identify and include individuals knowledgeable about the research topic. these individuals may suggest other respondents, who are informed or influential regarding oud in rural maine.23,24 out of 57 contacted people, 33 representatives were interviewed in 30 individual sessions and one focus group. on average, the interviews lasted for one hour and 15 minutes. during participant observation, informal interviews were held with clients who approached me as i collected field notes, to better understand their attitudes towards maine’s treatment facilities. consistent with purposive sampling, some respondents suggested interviews with other stakeholders, who were knowledgeable regarding oud in rural maine. as data collection and analysis progressed, in an iterative and reflexive process, themes regarding the interplay among medical professionals and treatment providers became stronger and more compelling. ongoing data collection focused on exploring these themes. as noted above, the first author as a participant observer, was able to ask questions unobtrusively while in the field. we continued to collect data from our informants until data saturation was achieved.23,24 artifacts copies of maine legislation as it pertained to opioid use, pamphlets used in treatment centers to inform patients and their relatives about available treatment and support options, educational materials related to opioid prescriptions given out in clinics to patients, and articles from local newspaper featuring stories of oud, overdoses, and their repercussions for maine communities were also collected and their content helped informed the context of the research. data analysis thematic analysis, employing a constant, comparative method as described in grounded theory, was used to analyze the data.25,26 first, induction was used to develop ten narrative vignettes to determine the emerging themes.27 then the transcripts and observational data were crossexamined, coded, and arranged into emergent themes. we continued to collect data as themes emerged, as further questions developed in our efforts to delve more deeply into the phenomena under study. the developed themes were discussed with the full research team (all authors) and related to the post-hoc literature review on opioid epidemic in the rural us, available epidemiology data form maine, as well as oud development and treatment theories. data collection and analysis were guided by the criteria for reporting qualitative research (coreq) proposed by tong, sainsbury, and craig (2007).28 results the perceptions regarding the emergence of oud in maine shared by health care providers and community leaders are presented and summarized in table 1. these findings present a complex array of factors contributing to the opioid epidemic in maine. the dilemmas posed by er opioids, managing chronic pain, and treating oud the dilemma of the new class of er opioids as i volunteered and shadowed at one of the rural, critical access hospitals on the coast of maine, i witnessed patients admitted with drug overdose or in withdrawal. i became privy to patients’ stories about the development of their substance use disorder (sud) and how it challenged their everyday lives. i shadowed dr. carter, a pcp with a suboxone waiver. when asked about the opioid epidemic, dr. carter indicated that the manufacturing of er opioids and their advertisement as “safe” were directly linked to over-prescription patterns among physicians. dr. carter argued that the rapid “incorporation of opioid prescriptions” into everyday medical practice was one of the major causes leading to the vast availability and accessibility of opioids. dr. carter recalled how the new generation of opioids was introduced: “in retrospect, it turned out it was the pharmaceutical industry that pushed for such shift to make profits from their long-term acting opioids such as oxycontin. that was the case in the 90s […] and everywhere you looked that’s what you were hearing. so, unfortunately, doctors believed it and incorporated it into their practice. the opioid crisis really got started thanks to the pharmaceutical companies.” (carter, 2017). [qualitative research in medicine & healthcare 2020; 4:9175] [page 135] article no nco mm er cia l u se on ly i also shadowed the medical practice of a psychiatrist at a family mental health clinic (the clinic) in down east maine, who specialized in sud recovery. the executive director of the clinic, dr. davis, explained his view of oud due to over-prescription, saying, “due to their properties, use of opioids leads to development of tolerance, defined as a diminished response to the same drug dose.” tolerance, he said, is followed by drug dependence and addiction, both physically and psychologically. consequently, the patient will need higher dosages to achieve the same effect. tolerance develops over different periods of time in different patients. according to dr. davis, the over-prescription of opm was a common story leading to sud. as highlighted by the interviewed providers, opioid over-prescription became part of medical practice due to persistent pharmaceutical advertisement coupled with changes in the medical community regarding the significance of pain. the dilemma of pain as the “fifth vital sign” physicians described another factor influencing overprescription of pain medications. in the 1990s, the american medical association recognized pain as the fifth vital sign. in terms of diagnosis, pain received equal status with the four other vital signs: blood pressure, heart rate, respiratory rate, and temperature. the implementation of the pain scale, the impetus to provide adequate pain treatment, and the new generation of er opioids, coalesced into over-prescription of opioids. dr. carter. explained, “this epidemic was created by prescribing physicians. this is not something that grew up out of inner cities or mafia syndicates. this was entirely created by doctors and pharmaceutical companies… and here we are, 20 years later dealing with the fallout from this kind of corporate, greed-based decisions, which are taking advantage of doctors being empathetic and gullible and focused on treating their patients’ pain… it is a very sad chapter in the history of modern medicine.” (carter, 2017). dr. smith and dr. miller, physicians practicing in rural clinics, added that many of their maine colleagues did not recognize the seriousness of the opioid over-prescription problem as it developed. both mds were dismayed by the continued absences of their colleagues (other medical professionals, whose patients were affected by oud), in local meetings regarding the opioid epidemic and new legislation, maine chapter 488, designed to address the opioid crisis in maine. the dilemma of oud as a chronic disease the clinic in down east maine, specializing in substance use recovery, offered an outpatient based on weekly or bi-weekly individual counseling sessions in combination with mat. mat utilizes partial or full opioid receptor agonists, such as methadone or buprenorphine; these pharmaceuticals help stabilize patients in recovery, help manage their cravings, and lower the rates of relapses.29 dr. davis, who treated dominic, the lobsterman described in the introduction, worked alongside other providers at the clinic, to stabilize their patients in recovery though mat and individual counseling. dr. davis was one of the few mds who had a suboxone waiver, allowing him to prescribe the opioid replacement medication to his patients in recovery. dr davis believed that suboxone enabled his patients to quit “chasing the drugs,” providing them with an opportunity to regain control over their lives, secure a job, and reestablish relationships with their family and friends. dr. davis believed, that ideally, patients in recovery should graduate from mat and not return to opioids. whether mat alone was able to prevent one from relapsing, however, was unclear to treatment providers, as some of them expressed concerns that the medical model of treating opioids had limited usefulness. yet, dr. smith, described the importance of comparing oud to a chronic disease, such as diabetes. he explained, “diabetes is not the best analogy to use, but the analogy offers an opportunity for pcps [to describe opioid] addiction as a chronic disease which requires long-term treatment. and just as diabetics often relapse and do not strictly follow their diet, addicts in recovery also slip and are not always successful right away. it also aids with creating treatment options. no one would withhold insulin from a diabetic, right? […]. i think, it also helps decrease the stigma around it.” (smith, 2017). several of dr. smith’s colleagues also used the diabetes analogy to describe needed oud treatment. simultaneously, they criticized and disliked any legislative efforts that could intrude into the doctor – patient relationship limiting treatment options, such as the maine public law chapter 488.1 nevertheless, dr. smith, however, believed that addressing oud solely as a diabetes-like chronic disease did not adequately capture the full picture of the disorder. socio-political context of oud in maine maine public law chapter 488: an act to prevent opiate abuse maine public law chapter 488 (2016) introduced a prescription monitoring program and limited physicians’ treatment options for prescribing opiates.1 several health care providers, as noted above, expressed frustration with aspects of the public law. dr. jones explained that the law limited options for his “relapsing” patients. “i think that whenever the government gets involved in [medical] treatment, it is inappropriate. they do not tell me if a diabetic patient doesn’t [page 136] [qualitative research in medicine & healthcare 2020; 4:9175] article no nco mm er cia l u se on ly take their medication appropriately and relapses, that i can’t treat them. they don’t tell me that the person with hypertension, who smokes and does not exercise, who then has a stroke, has a limit on how long we take care of them. why offer these arbitrary rules? it is driven by dollars and not by scientific data. we can take the attitude that we need to balance the budget. but even then, if you don’t treat addicts, the cost to the society and the cost of the incarceration can be 10 times higher than the cost of treatment.” (jones, 2017). dr. jones described the difficulties of interweaving of medical practice with policy as it relates to oud. the maine legislators, who developed chapter 488, introduced a possibility for prescribers to award patients in recovery with a “relapse” status, prolonging their possibility to remain in treatment for another 6 months. nevertheless, study informants said that the time limitations hampered physicians’ abilities to intervene appropriately with more adequate resources. since the time of conducting the interviews, chapter 488 has been modified. under section 20.32, mat was classified as an exception, allowing physicians to continue treating their patients with oud without arbitrary limitations on the length of mat prescriptions.1 the criminalization of oud and the introduction of heroin patients who relapsed after short-term treatment or lack of treatment sought opioids elsewhere and often ended up in the criminal justice system. dr. carter observed: “in the 90s there was an explosion of prescription opioids, and a lot of poor rural people got addicted that way. when people got addicted to prescription medication, prescription opioids became more expensive and less accessible, and at that point, heroin diffused from inner cities and became more accessible in the rural areas […]. i think that heroin addiction is a new phenomenon in the rural areas, and i think it stems out of the opioid prescription use, because i don’t think there was any other wave of heroin “pushers” who would move from the urban areas to come and introduce heroin here. heroin filled the void, when prescription medication became less available. these things come in waves. so now we have fentanyl on the rise.” (carter, 2017). dr. jones offered a similar view: “another thing we need to think about is why the heroin street price went down. what caused that? what made it so readily available? so, you start with a bunch of oxycontin from the doctor, you develop the disease of addiction – now you are dependent. then you want to continue either with opioid medications or heroin. and so, at first, heroin was very expensive, and it was hard to get. there was not much supply available on the market. […] but as the prescription medications started to be more expensive and harder to get, heroin was becoming otherwise.” (jones, 2017) heroin, however, was the drug of “last resort” for many people with oud. heroin posed one major challenge: to be used, it had to be injected, which was a much less appealing way of administration than simply taking pills. dr. jones believed that heroin providers found a solution to make it more “user-friendly.” “people who sell heroin are not stupid. they know that clean heroin can be snorted and that could be appealing for people who have [an] aversion towards needles. so, all in all, the continuation of the epidemic we are observing right now is possible, because people were able to switch to cheaper, better [more potent], and more available heroin.” (jones, 2017). statistics supported these physicians’ views. heroin increasingly became the cause of overdoses and deaths throughout maine.11,13 with the introduction of heroin, the opioid epidemic, which presumptively began in a medical setting, moved onto the streets and became highly stigmatized and criminalized. the change in venue led to involvement of law enforcement and further criminal legislation, impinging upon the doctor-patient relationship. dr. davis was deeply disturbed to see his patients become destabilized and relapse due to short stays in jail. moreover, he did not have access to his clients while incarcerated. consequently, patients whom he had treated with suboxone were inaccessible to him and unable to receive suboxone. he wondered, “why can’t [law enforcement agencies] give them the suboxone? it’s a medication after all. they would not take away an inmate’s insulin.” according to dr. davis, the criminalization of clients with oud also resulted in further stigmatization, prompting exclusionary processes that marginalized people under his care. dr. smith noted that the difficulty of treating oud patients stemmed from historical prejudices and social stigma associated with sud. the strict engagement of law enforcement created a conflict between their representatives and the medical field. during an informal meeting at the clinic, health care providers and counselors noted another persistent concern regarding their clients, many of whom seemed overwhelmed with everyday tasks, such as paying bills, controlling finances, managing a household, or being consistent with their children. due to limited resources and time constrains, the counselors concluded that the [qualitative research in medicine & healthcare 2020; 4:9175] [page 137] article no nco mm er cia l u se on ly clinic could not address these basic life skills and that some of their clients may need social workers for additional support. however, they also noted that those services were extremely difficult to obtain in maine. it became clear that the problem of oud was more complex than addressing chronic pain, physiological addiction, and offering mat. the problem of pain oud arising from psychological as well as physical injury health care providers and counselors described a multitude of factors fueling the oud in maine. these included a lack of healthcare insurance, an absence of adequate social support (public transportation, childcare), an absence of family support, a lack of sustainable employment, and isolation. it became clear that providing people with mat, though vital in the initial phase of recovery, would not solve the problem alone. in most cases, chronic pain could not be solved solely through medical means. dr. davis explained, “chronic pain is a really tough problem and opioids are not the solution. chronic pain is a difficult enough problem to manage by itself. other socio-economic factors, psychiatric issues, and societal problems add to it, making it even more difficult to manage… there are people who have legitimate chronic pain problems, and i do have a few patients in my practice, who are reasonably well managed on a reasonable dose of chronic opioid that have not run into any major problems with their opioid therapy. unfortunately, the downside is that, i think, most of the patients are not well managed and [opioid therapy] is not a very good treatment for [their] chronic pain.” (davis, 2017). given that the over-prescription of medications began as an attempt to address chronic pain, dr. davis directed his attention towards the nature of pain. according to him, chronic pain is much more complicated than most physicians understand. “opioids do not only treat physical pain. they treat emotional pain. in a sense, you want to broaden the definition of injury to psychic injury, or emotional injury, like trauma, depression, profound anxiety. those are emotionally painful situations, and i don’t think those get fully appreciated. and so, what the [patients] are looking for is an escape [from different kinds of pain] and opioids provide that. in a very, very short term it is a solution, as their pain diminishes. then, very quickly they become addicted […].” (davis, 2017). mental health providers recalled stories of trauma and emotional pain experienced by their patients with oud. for example, dr. smith suggested that defining substance use as a predominantly medical problem can help to de-stigmatize oud and advocate for better access to its medical treatment. however, in further conversations, he noted that medical interventions alone cannot address the structural changes required to provide more supportive environments, alter social attitudes regarding oud, and remove barriers to wider prevention and treatment. dr. williams, the director of the outpatient methadone clinic in one of the psychiatric hospitals in maine, commented directly on the role of both physical and psychic pain in oud. dr. williams placed emotional trauma in the context of self-medication and sud. “i hear people say, “i was using to feel numb. now i’m not using and life hurts.” and it’s very common for people with trauma to say that, and it makes it much more difficult for them to engage in recovery, cause it still hurts. and they don’t know how to deal with their pain. the only thing they’ve learned over the years is that “this pill [opioids] takes care of my emotional pain. but when i don’t have this pill, how am i going to take care of my emotional pain?” they will need to take time to learn how to take care of their emotional pain. and during that time, it’s always a struggle.” (williams, 2017). unresolved, underlying emotional distress triggers relapsing.30 healing requires time during which people may present with variable, interchangeable, psychological and physiological symptoms. when in treatment for oud, the opioid-induced numbness disappears, and the feelings associated with trauma return. in the absence of support for addressing underlying trauma, relapses in treatment become more frequent. when asked about the common stories of sud, interviewees would often talk about underlying trauma, domestic violence, physical and sexual abuse. though, emotional pain seems to accompany oud often, the stories about prevailing pain and the difficulty to move on are frequently not included in statistics or biomedical studies. the stories of emotional pain came up repeatedly during the interviews with healthcare providers and community leaders, who would describe the devastating repercussions such events had on people’s lives. during participant observation in recovery centers across the state, patients would frequently mention past abuse, neglect, and trauma as events leading up to or reinforcing their oud. the prevalence of these stories led to further questions for health care providers about their perspective on emotional pain in the context of the current opioid epidemic. one mental health counselor explained, “trauma is huge. it’s either because a client grew [page 138] [qualitative research in medicine & healthcare 2020; 4:9175] article no nco mm er cia l u se on ly up in a home, where because of the use and abuse, they lived in the environment of violence and all of that that comes with it; or they ended up living with individuals with high risk, and so they might have experienced multiple rapes, assaults, or domestic violence. sometimes even being on the street where you don’t know when your next meal will be and what is going to happen, or simply witnessing things that are violent can be very traumatic. many of our clients come from homes where there have been emotional, psychological, and physical abuse. […] and every woman that comes to our residential hills program has severe trauma; every one of them.” (rose, 2017). trauma leads to susceptibility to sud, and sud fuels further trauma. to illustrate the prevalence of trauma, dr. williams, linked trauma to the degree of severity of one’s oud. “so [about trauma], it is something that i hear about, time and time again, especially with the methadone and suboxone patients. we tend to get patients with the most severe addiction. people with milder addiction would go to their pcp or they would stop [taking drugs] themselves. they don’t need replacement therapy. with severely addicted people, none of these works. […] what we see in people with very severe addictions is a common thread of trauma.” (williams, 2017). dr. williams continued describing trauma in terms of emotional pain and the challenges it posed to many of his patients. given how ubiquitous trauma was among patients who develop oud, dr. williams described the relationship between the two as causal: “looking at one’s [medical] history, we can almost say that you can start perceiving trauma as predictive for severe addiction. most people with trauma tell us: “when i took the pill for the first time, i felt different. i felt alive, i felt normal. for the first time i was living without pain.” (williams, 2017). dr. williams further explained how trauma leads to the development of oud. “opioids treat emotional pain as effectively as they treat physical pain. pain itself has a strong emotional component. there is no such difference as physical and emotional pain, mind versus body. i don’t think that there is much difference between mind and body, it’s still the same person and it is the same pain. so [opioids] treat emotional pain. and trauma puts people more at risk for opioid addiction as trauma causes that emotional pain in the first place […].” (williams, 2017). dr. williams did not distinguish between emotional and physical pain, but rather, portrayed trauma as making an individual more vulnerable to the potent analgesic effect offered by opioids. dr. williams raised the issue of mind-body dualism in western medicine, the idea that the mind and body are two distinct entities with each having a different, essential nature.31 dr. williams suggested that pain should be considered and treated more holistically. other components to pain, whether chronic or acute, need to be taken into consideration to explore the sources and design the solutions to end the opioid epidemic. dr. smith expressed similar views to dr. williams. in considering the treatment of chronic pain, dr. smith stated, “chronic pain has biological, psychological and physical components in it. and if we’re only dealing with the acute medical issue and not dealing with the psycho-social aspect of the problem, we will never resolve it fully, because there are so many driving forces to use or abuse temporarily or chronically opioids.” (smith, 2017). other respondents, in describing the complexity of chronic pain, also raised concerns regarding the role of social rejection or exclusion in exacerbating oud through the social component of pain. vulnerability to oud arising from influence of social isolation, exclusion, and stigma the peer recovery center in portland operated differently from other recovery centers described previously. it is not associated with a formal treatment center and does not offer mat to people in recovery. the center’s focus is providing social support, understanding, and acceptance. mr. corteau, the director, and his colleagues interacted with clients as peers, emphasizing the importance of community support in recovery; they regard the medical model of sud as secondary. peer recovery, at the peer recovery center, was about the people “who have been there,” people who can relate and provide a different level of trust and understanding in comparison to the dynamics in other medical or counselling milieus. corteau explained, “the opposition to addiction is not sobriety, but social connection.” combining the perspectives of a provider and person in long-term recovery, corteau explained the role of social stigma in terms of personal shame and guilt. “shame is huge in addiction. while in active addiction, we use it in a maladaptive way to keep the addiction cycle going. so, i might do something in my active addiction that causes shame. for in [qualitative research in medicine & healthcare 2020; 4:9175] [page 139] article no nco mm er cia l u se on ly stance, i stole something, or i abused someone in some way and then i felt bad about it. the way that we cope with any emotion when we are in active addiction is we use more substances. so, in a maladaptive way shame is useful. it is part of the cycle of using. sometimes, when people are trying to help, they can cause a little bit of that shame, often not purposefully. but when you do that, especially to those who struggle, you actually help fuel the addiction. so, the more we can combat that feeling of shame, the more we can propel person into recovery. stigma is part of shame. if i stigmatize you, i am shaming you, right?” (cotreau, 2017) relationships between people struggling with oud and members of their communities are often damaged. stigma associated with substance use occurs across settings. for example, medical communities tended to stigmatize persons with oud. patients dependent on prescription medications who appeared in emergency departments or in primary care were often referred to as “frequent flyers*” and “drug seekers,” and were not necessarily treated compassionately or referred to treatment resources. stigma, triggering shame and social isolation, contributed to cycles of relapse and oud. mrs. moore, a counselor who worked with inmates in the hancock county jail, also described the conflicted relationships between those struggling with oud and members of their rural communities, saying: “there is hurtful behavior going around because of the addiction, as people are not in touch with their emotions. they are numbing out through using, so they are not in touch with many sides of themselves, which only brings them further away from their community and family. it is very alienating and builds walls around them; violates their dignity. […] it is hard to see how addiction is a reaction to life challenges for those who do not have other toolkits to solve them. our culture does not provide people with those skills.” (moore, 2017). moore addressed how the social context and self-detachment of the person with oud creates a vicious cycle of hurt. a person suffering with oud needs organized community support. yet after years of hurtful behavior, broken trust, followed by exclusion, self-isolation, and experiences of shame, it can be difficult to find the needed support in already small and isolated maine communities. moore and corteau comments raise the question: how can the cycle of oud be broken through reconnecting people with each other and with themselves? discussion similarities between rural maine and the nation several findings from this study (see table 1) are similar to other published reports regarding oud. as de[page 140] [qualitative research in medicine & healthcare 2020; 4:9175] article table 1. themes and supporting quotes. theme domain supporting quote the dilemmas posed by extended-release opioids, the dilemma of the new class of er opioid “pharmaceutical companies pushed for the use of managing chronic pain, and treating oud er opioids, and doctors, who believed in their safety, incorporated them into practice.” the dilemma of pain as the “fifth vital sign” “[this is] a fallout from […] corporate, greed-based decisions, which are taking advantage of doctors being empathetic and gullible and focused on treating […] pain.” the dilemma of oud as a chronic disease “addiction as a chronic disease requires a long-term treatment, […] addicts in recovery slip and are not always successful right away.” the socio-political context of oud in maine main public law chapter 488: an act to “i think that whenever the government gets prevent opiate abuse involved in [medical] treatment, it is inappropriate.” criminalization of oud and the “you start with a bunch of oxycontin, you develop introduction of street heroin the disease of addiction, and so you want to continue with either opioid medication or heroin […]. as prescription medications started to be more expensive and harder to get, heroin was becoming otherwise.” the problem of pain oud arising from both physical “there is no such difference as physical and and psychological pain. emotional pain […]. trauma causes emotional pain and puts people at risk for opioid addiction. opioids [also] treat emotional pain.” vulnerability to oud arising from influence “the opposition of addiction is not sobriety, but of social isolation, exclusion, and stigma social connection.” no nco mm er cia l u se on ly scribed by our informants, health care providers were unaware that the newer forms of opiates were no less addictive than those used previously. encouraged by pharmaceutical companies’ statements of safety and efficacy, physicians increasingly prescribed er opiates.32 similarly to our informants, other researchers have also reported that physicians treating pain as a fifth vital sign contributed to opioid over prescription patterns.32,33 the understanding of oud as a chronic disease, as noted by our informants, has also been prevalent in the research, which documented that long-term opioid use leads to brain rewiring, mediated by persistent alterations to the function of reward-processing networks in the brain.34 the epigenetic changes result in further alterations to signaling cascades, cellular structure, and synaptic activities, leading to modifications critical to the formation and recall of long-term memory.34 these underlying physiological mechanisms contribute to the development of cravings, relapse, and addiction cycles, and demonstrate why it is difficult to discontinue the use of opioids.34 these results prompt some researchers to conclude that oud must be managed similarly to other chronic diseases.34 a report from the national center on addiction and substance abuse also described oud as a “chronic brain disease.”35 similar to smaller states, in maine community leaders became involved as oud began to strain social networks, community resources, and criminal justice system. in response to demand for opiates, illegal heroin networks emerged in predominately white populations living in maine’s small metropolitan and rural areas.32 social beliefs and attitudes regarding oud further complicated the problem of oud and its treatment. informants in this study noted that “addiction as chronic disease” is a useful way to destigmatize it. they argue that to prevent deaths from oud, laws such as chapter 488 need to be coupled with a significant increase in the availability of treatment and recovery plans, overseen primarily by medical communities. nevertheless, a focus on “addiction as a chronic brain disease” does not fully capture the problem of pain. the problem of pain: a socio-ecological model findings from this study indicate that the problem of pain, leading to opioid use, is more complex than the simple story of treating physical pain with er opiates, leading to tolerance, dependence, and eventual addiction. the complexity of oud and addressing the current crisis is summarized in the socio-ecological model (sem) (figure 1). the sem model illustrates how the opioid epidemic emerged from dynamic interactions among a constellation of factors, including misleading information from the [qualitative research in medicine & healthcare 2020; 4:9175] [page 141] article figure 1. socio-ecological model representing increasing vulnerability towards oud in maine, based on the factors reported by the interviewed health care professionals and community leaders. no nco mm er cia l u se on ly pharmaceutical lobby, over-prescription patterns, medical culture regarding pain treatment, and individuals’ personal histories of pain, their sociodemographic characteristics, their communities’ availability of supportive social structures, and local and regional cultural norms and policies regarding substance use. the united states’ response to the problem of pain has deep historical and cultural roots that may have led to restrictive views of pain, narrowing treatment options and creating a fertile context for the opioid epidemic to emerge. the problem of pain: a historical, social perspective in modern american medical practice, pain has been considered difficult to measure objectively.36 progress in modern medicine has developed through the rigor of “scientific objectivity” enabling medical researchers to develop diagnostic criteria for “real diseases.”36 the significance of “objectivity” was coupled with the establishment of mind-body dualism (in the 17th century) and the belief in empirical or unbiased methods as the only legitimate paths to knowledge.37 the success of experimental sciences further reinforced the mind-body dualism as human beings were viewed predominantly as biological organisms (materialism) to be understood by examining their constituent parts (reductionism) using the principles of anatomy, physiology, biochemistry, and physics.31,36 as noted by several of our informants, attempts to objectify pain by use of a scale coupled with reductionists’ approaches to treating pain have been counterproductive. informants in this study believe that medical researchers and policymakers have overlooked the importance of individuals’ socio-emotional context in the development of oud. pain as an integration of physical, psychological and socioemotional factors the inclusion of psychological or “emotional injury” in the definition of pain would move the medical discourse beyond simplistic quantifiable measurements, such as the frequently used pain scale.38 interestingly, neuroscience research has provided “objective” observations of pain through functional neuroimaging studies and prospective clinical studies demonstrating the differences between acute and chronic pain.38 the initial “acute” sensation of pain activates the sensory “pain matrix” region of the brain.38 however, chronic pain, impacts the underlying physiology of the brain related to dopamine circuits and brain regions involved in processing emotions, reward, and psychosocial events.38,39 taking opioids for the first time makes the prevailing pain disappear and creates the powerful effect of disconnection from the stress and troubles of life, the “numbing” effects often described by health care providers in this study. current medical practices, however, continue the anatomical focus and mindbody dualism split regarding the perception of pain. yet, as demonstrated by this study, the process of understanding the complexity of pain is crucial in treating chronic pain and oud. the role of social inclusion or rejection in oud though it can be initiated by replication of negative behavioral patterns within a peer group, oud is also fueled by social isolation and rejection, reinforcing shame and stigma among those struggling with oud. neuroimaging research has revealed that the “unpleasantness’’ of physical pain activates the same regions of the brain that are stimulated during experiences of social rejection and self-reported social distress.40 these findings suggest that perception of pain and social distress may share neuronal circuits.40 conversely, the presence of social support, which attenuates feelings of social distress, may alter perceptions of physical pain. indeed, experimental work has shown that the presence of supportive others attenuates pain perception in both animals and humans.41 therefore, presence of social support may be important in regulating perceptions of pain.41 as described by the study respondents, guilt and shame are also involved in shaping one’s socio-environmental support structures. the feelings of guilt and shame, as part of stigmatization, can have various sources. selfstigma is characterized as “negative feeling about self,” while social stigma or structural stigma is related to restrictive rules, policies, and procedures.42 in healthcare setting, stigma is described as a socio-cultural process in which certain groups are devalued, rejected, and excluded on the basis of a socially discredited health conditions.42 the impact of labeling and stigmatization on service provision presents both the potential patients and allied health professionals with roadblocks to sud treatment. initiatives to establish new recovery centers are met with disagreement from local communities, arguing that they do not wish to have a “conglomeration of addicts hanging out in their neighborhood.” characteristics of social connections in rural populations, such as geographical isolation and fixed social identities, can intensify patterns of stigmatization. additionally, a paucity of social services in rural areas compound the problems of isolation. accessibility to social support, followed by stability, structure, and re-connection are vital to help reverse “the tunnel like vision” and “chasing behind drugs,” characteristic of drug-seeking behaviors. one of our respondents, rosenberg, stated “the most effective recovery is to establish stability comprised of recognition, social support, and the possibility for a stable employment without mistrust and stigma”. the emphasis on developing new coping mechanisms to address personal and environmental challenges as well as to change past habits during recovery go beyond the treatment setting. many of the people currently struggling with oud lack skills to cope with the problems of everyday life. therefore, expecting them to manage traumatic or burdensome events in a healthy way might be unrea[page 142] [qualitative research in medicine & healthcare 2020; 4:9175] article no nco mm er cia l u se on ly sonable. further, if the propensity toward oud begins in early childhood, through the environmental and social structures people grow up in, maybe the factors or sources fueling the current opioid epidemic should be searched for beyond medical practices and rather be explored within the context of deeper changes of societal or cultural characteristics of rural areas, which have taken place over the past decades. conclusions oud is a result of multifaceted behaviors which are strongly influenced by contextual factors and is difficult to encompass through any single lens (figure 1). sud results from dynamic interactions among an individual’s biological and genetic predisposition, psychological constitution, and social environment and are best described through a biopsycho-social model.43 the way in which someone becomes introduced to substances – whether through self-medication or prescription medication– is yet another factor that informs the patterns of one’s use. it is crucial to recognize that the formation of these behavioral patterns is further informed by social networks, their cohesion and identity, as well as by community practices around substance use and its legal and moral status, medical practice around opms, and social justice (figure 1). social policy can further define actions that affect the well-being of members of a society through shaping the distribution of and access to goods and resources (figure 1). those factors stress the interconnectedness between individual differences and situational and structural characteristics that form one’s addictive behaviors.43 the current medical model of oud continues to be reductionist. the assumption of a linear relationship between the brain and the drug implies that the complete removal of the drug or a genetic-based alteration in the brain should solve the problem of oud.44 historically, solutions addressing the problem of substance use through drug removal and criminalization often only increased the stigma and escalated the problem, as in the example of crack cocaine epidemic in earlier decades.45 unfortunately, many models of oud remain limited and therefore, are unable to equally represent interest of all involved, while some models can even put forth solutions mutually excluding interests of the involved groups. an example of such conflicting interests was described earlier as physicians argued for the use of mat in jails. alternate conceptualizations of pain and sud would have implications for several groups of people, including those with oud, their families, researchers, medical providers, and policymakers. any framework for the conceptualization of sud must allow for a bottom-up development, integrated within the context of socio-ecological model of oud development.43 studying oud as a broader cluster of factors would likely aid in broadening its comprehension and offering “multimodal approaches that include both individual and addiction-general treatments.”46 studies support the concept that patients with multiple comorbidities may benefit from the development and evaluation of integrated patient-centered interventions that target chronic pain, opioid dependence, and other psycho-social factors.47 such an approach would require service providers to continually assess the impact of these factors on relapse and other treatment-related outcomes over the course of illness.46 though promising, the implementation of such approaches requires an adequate recognition of what causes oud in the first place and must provide people with an access to various treatment options which, in maine and other rural areas, remains difficult either because of geographic limitations or sparseness of resources.19,48 proposing that a client needs a certain amount of counseling for an extended period of time, different medications, or physical therapy to address chronic pain might be difficult in rural areas with limited providers and insufficient fiscal resources to ensure that services can be accessible to low income populations.18 oud is a complex disease and as such, its understanding cannot be achieved through simplified and reductionist models. focusing predominantly on oud’s physiology limits the financial and scientific potential to study and comprehend oud and its implications in a broader, ecological context. by disregarding the complexity of oud, scientific evidence leads to the creation and implementation of policies and treatment options which have a limited ability to help those struggling with the disease and its repercussions. with the current opioid overdose death rates, addressing such complex conditions through simplified models and promoting “one size fits all” solutions might have negative consequences and lead to a continuous increase in deaths from opioid overdoses. most importantly, any theoretical framework or policy must remain faithful to and representative of lived human experience, or at the very least, it should allow space to meet the needs of the people whom it is intended to serve. limitations there are multiple limitations in this study. despite utilization of purposive sampling, we managed to interview only 58 per cent of the contacted providers and community leaders. twenty-one of the interviewees were either medical providers or licensed counselors, leading to potential overrepresentation of their views in the study results. there were no interviews conducted with representatives of the pharmaceutical industry. additional studies, with an in-depth focus on other stakeholders initially interviewed in this study (such as community leaders and criminal justice representatives), need to be conducted. limited funding and timeframe of this project, prevented us from accessing more remote communities in northern maine, potentially limiting the generalizability [qualitative research in medicine & healthcare 2020; 4:9175] [page 143] article no nco mm er cia l u se on ly of the results. finally, maine remains one of the least populated states with highest percentage of non-hispanic whites in the us.49,50 consequently, its inhabitants face different sets of challenges around their oud and as such, their experiences may not be true, valid, or 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4:9175] [page 145] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2019; 3:8638] [page 99] in the early morning hours of one night, when i am a neurology resident on call at the hospital, i am paged to a stroke alert. this means i had to run to the emergency room to see, assess, and treat a critically ill patient. if the diagnosis is actually stroke, i have to decide whether to give a medication called tpa (a “clot-buster”), treat a brain hemorrhage, or call neurosurgery for emergency brain surgery. in the trauma bay, there are no er doctors or nurses. it is shockingly quiet. i go to my patient who is unconscious and unresponsive, with labored breathing and thread pulse. ems has dropped her off and left. i do my neuro exam and realize she is near death and cannot be revived. she had been found at home alone in the bathtub. someone had called for a wellness check probably because she had missed usual activities and had not been seen. the ambulance arrived, gave oxygen, and started a line to give intravenous fluid. i examine her, trying to be as gentle as i can. she smelled of death and yet she was breathing (barely) and her heart was still beating. there was no way she could have been revived. she had literally been on her deathbed when her death was interrupted by medics trained to rescue at all cost. i had to fulfill my legal obligation to intervene but did not want to do any of these things to her. i did not want to subject her to physical trauma because of what i was ‘supposed’ to do. soon her organs only remained functioning due to horribly invasive measures. because she has no living will, i am legally obligated to call for full resuscitation: a breathing tube through her mouth and vocal cords, into her lungs, a central line which delivers fluid through her veins into her heart. i call my sleeping, sleep deprived, overworked supervising attending who has no further advice. no family or friends showed up in the emergency room and she officially died not long after. i’ve carried this weight with me ever since. i collected so many stories of devastated lives during my pre-medical school shadowing, 4 years of medical school, 4 years of neurology residency, year of stroke fellowship, and 3 ½ years in practice. one of my patients was paralyzed from the waist down after a severe spinal cord infection after injecting drugs into her veins. she talked to me about how she was depressed because there was literally nothing that could be done about her paralysis. the shame and horror was palpable when we talked. i tried to help by listening to her, thinking of how to provide some rationale to keep going: her children, her spouse, anything. she felt that she was a burden to her family. medications for depression had not helped her. she looked at me and said “my life will never improve, there is nothing i can do, i am a burden, and there is literally nothing to live for”. there was a teenager with terminal, rare cancer for which there was no available treatment. there was a commercial pilot who suffered a seizure and could no longer pursue his life passion. there were others. there was not anything i could do to help other than to just listen. i keep these stories with me. i sit with them, regularly, wondering how i could have done better. it is horrific to receive devastating news and it is horrific to deliver one. the guilt of not being able to do more was something i had personal difficulty with and i became depressed. in the state where i did my medical training, most primary care doctors do not treat things like depression or anxiety. after my fellowship training, i moved across the country to a state where my spouse and i knew hardly anyone. i developed severe work-related anxiety due to the unrealistic expectation of perfection by my clinic surnevertheless, i have persisted melissa j. freeman medical doctor, usa correspondence: melissa j. freeman, vancouver, wa 98663, usa. e-mail: freeman.melissa@gmail.com key words: fsphp; php; physician suicide; physician health program. received for publication: 24 october 2019. accepted for publication: 21 november 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:99-106 doi:10.4081/qrmh.2019.8638 qualitative research in medicine & healthcare 2019; volume 3:99-106 no nco mm er cia l u se on ly rounding patient satisfaction scores not being perfect enough. i could see clearly that it was going to be an issue if i let it go any further which is why i sought help. a friend recommended her psychiatrist. i scheduled an appointment and they listened. i started an antidepressant and anxiolytic (low dose clonazepam). that was to help me sleep i had developed severe sleep deprivation in my prior training, and the horrible anxiety i was experiencing would keep me up at night, ruminating over what i did or did not do that could have made me ‘more perfect’ in my job. clonazepam, by the way, is an anxiolytic that has very minimal risk of abuse because it is not euphoria-inducing and is very safe pharmacologically. anxiety and depression happen to medical professionals far more frequently than many would think. depending on the screening tool used, it is as high as approximately 43% in resident physicians, and it increases with time.1 in fact, mental illness in physicians is widely underreported; most physicians are worried about losing their medical license for having a mental health diagnosis that is often required to be reported to the state board of medicine.2-4 one might imagine that having untreated mental illness might put physicians at higher risk of suicide. in fact, physicians are at greater risk of suicide than other people. physicians are approximately twice as likely to suicide than others.5 the united states loses approximately up to 400 physicians annually due to physician suicide;6 the statistics are even worse for women physicians.7 in fact, physicians have the highest rate of suicide compared to any other profession. again: most physicians do not seek treatment for mental health because of the stigma of mental illness within the medical community.7-11 “physicians are more than twice as likely to kill themselves as non-physicians (and female physicians, three times more likely than their male counterparts). some 400 doctors commit suicide every year”.11 despite horror stories that i had heard and read surrounding punitive consequences of seeking treatment for mental health,12,13 i did. i would like to note that there is a concern for increasing burnout among physicians13,14 and that this differs from clinical diagnoses of depression, anxiety, post traumatic stress disorder (ptsd), etc. i knew that i fit the criteria for something beyond burnout. i knew it was important it was necessary for me to get help. for me, that was more important that the concerns i and others had about repercussions of seeking care or having a mental health diagnosis.15 perfection is the expectation for physicians.16 consider patient satisfaction scores. patients must fill out anonymous surveys about their experience. pressganey is one of the better-known surveys.17 the anonymous patient satisfaction scores are based on mailed (or emailed) forms that asked for numerical rankings (on a scale of 1-10) as well as allowing for write-in comments. the patient satisfaction scores are used to determine medicare advantage financial bonuses to medical institutions. to get these bonuses, patient satisfaction scores have to be in the 90th percentile. mine were not perfect and i had enormous pressure to get better scores than 90% of neurologists in the state. because of low response rates, my numbers were actually not statistically significant (which did not matter to my clinic). i was also competing with doctors who were not seeing straightforward neurology patients i was also competing with pain specialists, sleep doctors, academic physicians, etc. i got numerous anonymous negative responses directed toward other doctors in my group. i got complaints about a staff member’s cleavage. i got innumerable complaints about the billing department, and i got plenty of comments bemoaning the length of the survey. my point is that i developed medical issues from this for which i actively sought professional help. here is a description of what some institutions offer doctors to help them be ‘more well’:18 “it’s resident wellness week at the children’s hospital, and one of the coordinators has put ice cream in the resident fridge. those of us who are working overnight shifts can’t make it to most of the wellness week events an aromatherapy session, a free yoga class, a whole hour where the hospital therapy dogs are available for us so the ice cream is an effort to make us feel included. the coordinator comes by the cluster of computers in the emergency room where we are sitting to tell us about it. at this moment, i happen to be placing a call to the orthopedic surgeons about a 19-month-old girl with a spiral fracture of the femur. i have already examined the kid, reviewed her x-rays and ordered her a dose of morphine. i have learned the name of her stuffed rabbit bunny. and after i talk to the surgeons i will call the child abuse team. the surgeon lets me know that they will plan to place a spica splint in the morning, so i should admit the kid to orthopedics. “and you’re calling cps?” he asks me. spiral fractures are a classic sign of child abuse a wound that is very difficult for a child to cause herself. “yeah, cps is already here”, i say. “who did it?” “her dad, presumably. she was alone with her dad when it happened. and the dude has a history”. “is her dad with her?” the surgeon asks me. this is when the coordinator appears before our bank of computers. “there’s ice cream in the fridge for you guys,” she says, “so be sure to take a break and get some”. i cover the mouthpiece of the phone with my hand and thank her. “happy wellness week!” she says, and waves goodbye. [page 100] [qualitative research in medicine & healthcare 2019; 3:8638] article no nco mm er cia l u se on ly i uncover the mouthpiece. “yeah.” i tell the surgeon. “her dad’s in the room.” no amount of meditation or ice cream or chamomile tea or melatonin or anything else i tried could fix my anxiety, insomnia, depression. here is another account of what is done to help medical doctors face being ‘unwell’:11 “hospitals and residency programs recognize the toll residency takes on the mental stability and physical health of new doctors. in 2003, work hours were capped at 80 hours a week for all residency training programs. residents are provided confidential counseling services to help cope with stress. my residency program offers writing workshops and monthly reflection rounds. we have a wellness committee that organizes social events such as bonfires on the beach and visits from therapy dogs”. perhaps some people do not benefit from beach bonfires or therapy dogs. these examples are from residency programs which provide more support than when one is in practice; however, even if my clinic had offered a bonfire or therapy dog it would have only made things worse for me. minimizing human suffering to something that is curable by having a cute, loving animal or a bonfire was just cruel. we already had 5 loving pets and a fire pit at our house. we had lost 2 of them; one had a devastating stroke, and one had severe pancreatitis and we had him in a home intensive care unit (icu) which required roundthe-clock care. having a therapy dog at work would have been so very cruel. these sorts of offerings by wellness committees are band-aids for a california wildfire they may help that splinter you get from a burning log, but they do nothing for the wildfire. i became very anxious about not being able to sleep. many sleep specialists say that cognitive behavioral therapy should help with anxiety surrounding sleep; however, i had tried this to no avail. i had tried every non-prescription medication option that i could come up with and all of the ones others recommended (with the exception of cannabis, as it is still federally illegal; even though it is legalized in my state, i was highly concerned about the loss of my medical license were i to try it). when i saw my doctor, he resumed the medication regimen that i had not needed for years, and i was able to continue my career and my life without disruption because i was no longer ruminating all night long. i cannot emphasize enough just how helpful this was. however, my clinic was concerned about my patient satisfaction scores. i met with the chief medical officer who suggested cocking my head like a dog to convey to my patients that i was listening. this did not seem helpful to me, and i felt that it was very insulting to not only me, but my patients. i had always listened intently to my patients. they may not have appreciated that i was listening because i was forced to stare at a computer screen to input their story into medical records. i wanted to capture their words into their record rather than trying to paraphrase it later. taking notes by hand would not have allowed me to do that, as the electronic medical records systems are now mandated. i doubt that cocking my head would have done the trick. my scores did not improve. they remained approximately in the top 25th percentile which would not bring in the financial bonus to the clinic. that required advancing further up on the bell curve that was to become my nemesis. six months after meeting with the chief medical officer, the clinic had another doctor shadow me. he previously had good rapport with patients but he no longer really saw many of his own. he shadowed many doctors and physician assistants who were not reaching the 90th percentile bell curve mark. his feedback was that i had good rapport with patients and had many strengths, but one of his suggestions was that i should touch my patients more. i was uncomfortable touching patients without a medical reason or consent. he had other suggestions, some of which i found offensive; i implemented others that seemed reasonable. my scores did not improve. they remained stable. i was still approximately in the top 25th percentile. some of the responses were because i could not give them the diagnosis for which they had hoped. those complaints were my responsibility; in fact, all of the complaints were including those directed at things far beyond my reach other health care providers, the phone bank, the billing department. this was in the first few years of my career. i was supposed to have a mentor but did not others around me were suffering in their own ways: my work partner’s daughter was dying and my chair hated neurology patients and wanted to leave the department. i was seeing the majority of all of our new patients myself. the clinic wanted us to see more patients, more quickly, and run what amounted to a walk-in neurology clinic. this was an impossible, highly unrealistic expectation. i had to discuss patient satisfaction scores every 6 months during my semi-annual reviews. after the first couple of reviews, i became really anxious about them. at first, i saw a naturopath to try to address this without medication. i followed her regimen for a few months with no results. she told me to envision putting on a superhero cape every time i went to work this technique did not help me; if anything, it made things worse. when you are under scrutiny for being perceived as unpopular and experienced unpopularity in childhood, it is even worse. (for me, the washington physicians health program (wphp) later used this as a psychological measure to keep me compliant). after i saw the naturopath, i saw the psychiatrist. the medication he prescribed allowed me to continue to function. i was surviving. my patient satisfaction scores did not budge, but i was not suffering and did my best. [qualitative research in medicine & healthcare 2019; 3:8638] [page 101] special issue on physician mental health no nco mm er cia l u se on ly one day when speaking with my department chair, whom i considered a friend, i mentioned that i was seeing a psychiatrist for the mood issues. he replied that he had never seen a psychiatrist, but his primary care physician (pcp) had prescribed antidepressants when he was going through a divorce. because i came from an environment where pcps did not treat mood problems, i had not considered this option. seeing a psychiatrist and my lessthan-90th percentile patient satisfaction scores were two black marks that triggered the referral to the wphp. my career was in jeopardy.12,19 the state phps claim that they are there to help ‘impaired’ physicians. in reality, they act as forensic specialists for the medical boards which control physician licensure.19 in washington state, the medical board is known as the washington medical commission (wmc). the historical mission of phps was to treat drug and alcohol addicted physicians in alcoholic/narcotic anonymous programs.2 their overreach now includes any medical or mental health-related condition that could possibly cause impairment.20 this overreach has been used legally to describe a wide range of conditions including identifying as homosexual.21 they also include multiple sclerosis, anxiety, depression, sleep issues, bipolar disorder under what they claim to monitor in lieu of being reported to the wmc. in reality, they are not equipped to deal with issues outside of the scope of substance use disorders.20 i was not referred to wphp for substance abuse or suspected impairment of any kind. even my employer misunderstood wphp’s purpose, thinking it was like an employee assistance program. my former clinic has since made the decision to never again refer anyone to wphp because of what happened to me. i really want to believe that the clinic, of which i was part owner, was simply ignorant. were they not, they would be in violation of americans with disabilities act (ada) regulations. i was very surprised that at my first visit with the wphp, i met with a psychiatrist and two others in a boardroom. i sat across the table from the 3 of them, who were spread out along the other side. i was grilled for approximately an hour by an aggressive investigator. this was not the behavior of any psychiatrist i had ever known. i felt like i was being interrogated by police, except that i had not been read any rights and was not counseled to obtain an attorney. the understanding was that i was there ‘willingly’. when your career is threatened for not complying with demands this is not actually willingly. it is forced and it is coerced. being in that room, i was under duress. nothing being discussed was surrounding communication at all. i was also coerced to undergo witnessed urine screen and blood testing. i will describe the witnessed urine screen later. as a neurologist, i knew that this testing was irrelevant to my problems. then i was shocked to learn that wphp uses non-fda approved laboratory tests in their evaluations. it never occurred to me that they approach almost all of their physician clients with an a priori assumption of substance abuse even though my employer explicitly stated that was not a concern and this is documented in wphp’s file on me. this is in sharp contrast to a standard diagnostic approach by ignoring the great variety of human disabilities, wphp pigeonholes all of their clients into the only category they can use. i thought i had been referred to get help with communication skills. you can imagine my confusion. in their paperwork on me, they documented me as having a ‘lack of insight’ during the evaluation. how does one have insight when one is blindsided having been told one thing, and then arriving to find a completely different situation at hand? after the first visit, i was told that i had to undergo a 5-day inpatient psychiatric evaluation. i live in washington state. for some reason, wphp uses no facilities in the pacific northwest. i had the option of going to alabama, arkansas, or denver. i opted for denver because it was the closest, i could get a direct flight, they were university-affiliated, and did not use polygraphs as the others did this is a debunked forensic procedure and is not evidence-based as in medical practice. i could not fathom why evaluation facilities would be using polygraphs for a psychiatric evaluation. as it turns out, the whole process is a forensic procedure, rather than the help that phps claim to provide. again this is a forensic and not clinical process. this is all conducted without being told one’s rights or being advised to obtain an attorney. there are good quality clinics in the pacific northwest to which i could have gone. it is astounding to me that the president-elect of the federation of state physician health programs who is on faculty at the university of washington works at a facility that is not deemed acceptable for physician evaluation. the cognitive dissonance that hits me when i try to understand this is extreme. i was not given a choice to be anywhere closer to home. i was not allowed an opportunity to have this evaluation done as an outpatient. i had to spend more than $7000 out of pocket to do this ‘willingly’; however, if i did not comply with this demand, i would have been reported to the wmc for non-compliance, and the wmc could suspend or revoke my medical license. i had to take 3 weeks off of work waiting for a vacancy at the facility. when i first arrived in denver, all of my belongings except my clothing and a couple of books were taken from me. my phone was taken and i had no means of contacting family or friends. i was isolated in a locked psychiatric facility for a forensic evaluation that nobody warned me about. i was not allowed an attorney; i was not read any rights; there was no due process. i was emotionally battered by psychologists, psychiatrists, and a chaplain. this made me physically ill especially the religious part. i was forced to attend alcoholics anonymous (aa) meetings during which the religious undertones rang so loudly. i spent my 40th birthday there, coerced into compliance by a threatening and hostile punitive program: the [page 102] [qualitative research in medicine & healthcare 2019; 3:8638] article no nco mm er cia l u se on ly wphp and the federation of state physician health programs (fsphp) system. the staff expectation when i checked in was that i would be there for 90 days: this was news to me. the man who did my intake evaluation was shocked when the only luggage i had was a backpack of items to get me through 5 days. when i left on day 5, he told me that i was the only person he had ever seen who was allowed to go home after the evaluation without the required 90 days stay. the internal medicine doctor who did my initial evaluation was surprised: every other physician had been required to stay for 90 days. the facility confirmed that i did not have any substance abuse issues and that i had a diagnosis of anxiety. nevertheless, my medical insurance was billed for a week of detoxification when there was no detoxification warranted. this cost tens of thousands of dollars. the psychiatrist in denver tried to coerce me to stay for 90 days in rehab for mood issues. this made absolutely no sense to me at all. after this traumatic experience, the wphp demanded that i sign a two-year behavioral health contract which included frequent unscheduled witnessed urine collections for substance abuse. the witnessed urine testing was not a recommendation of the colorado facility and not standard medical practice. only physicians in php treatment are subjected to this intrusion whether they are being treated/monitored for substance use disorders, or they are not. wphp demanded it despite knowing that i am a survivor of sexual assault. i was diagnosed with anxiety and dysthymia which i had already sought treatment for on my own and to which i had a good response. my chosen treating psychiatrist and my helpful medication were taken away, and wphp said that i should not talk about this to anyone. hearing that i should not talk about things to anyone it felt very much like an abusive situation, wherein the abuser threatens the abused into silence. the witnessed urine tests were very invasive as disclosed in the following testimony from my hearing regarding my medical license. this has not been modified and is directly from the transcriptionist: “you have to call in every morning and punch in the number that they gave you, and i told you whether you had to go provide urine that day. q. what time of the morning would you make that call? a. the earliest you could make the call was 5:00 a.m. i started because this whole process was stressful, i started waking up earlier and earlier and earlier, worried about whether i would have to go that day because it would make me change my work schedule to accommodate getting to the testing center on time. q. because what time did you show up for work? a. 8:00. q. so you’re expected to be at work at 8:00. and how long did you stay at the clinic on a typical day? a. on a typical day, between 4:00 and 5:00. q. okay. and the testing facility was open what hours? a. until 4:30 or 5:00. q. and it opened at what time in the morning? a. eight o’clock or it might have been 7:30. q. okay. so, you had to fit it did you ever have to leave the clinic and then go back to work after? a. there were a couple of times where a patient cancelled in the middle of the day and i was able to go over, but that wasn’t generally the case. q. okay. and forgive me. i interrupted you. i was asking you what it was like to comply with this testing requirement. a. it was really difficult. it was really, really difficult, and it became more and more difficult as the months went on. q. can you say more about that? a. it kept i mean, it was so frequent. there were days i would have to go two times in a row. q. two days in a row? a. two days in a row. you basically had to be able to urinate on the spot-on command. so usually on the days that i knew i would have to go, i would hold my urine through the entire day so that i actually had to go and could go at the end of the day. q. wow. and i know this isn’t easy, but can you give us a bit more detail about the testing? a. yeah. after you washed your hands in a certain way, you went into the bathroom with someone to accompany you. in my case it was a female. i was told that there should never be a female in with a male or a male in with a female. you have to pull down your pants and sit on the toilet and you would have to sit in such a way that your labia are visualized by the person watching you. you would then have to pee in the cup. sometimes, once that was done and you handed over the specimen, they would turn around and give you a little more privacy. other times, they would just keep watching. on days where i would have my menstrual cycle, i would have to explain that there was a tampon in place because that is a foreign object in that area. and then one day i think it was the last time i went for testing urine testing, i could not make it to my normal testing center in time. i had to work too late. the other testing center was open later, so i went there. it was a confusing building. no one seemed to know where i was supposed to go. i finally found it. they brought me into the restroom. i really, really tried to go. i was, like, kind of stressed out about it because of the time. they were going to close soon also. so, you can only sit in the bathroom or the restroom for a certain period of time before they make you leave and wait and come back later to get you. and while i was sitting in the [qualitative research in medicine & healthcare 2019; 3:8638] [page 103] special issue on physician mental health no nco mm er cia l u se on ly room waiting, i realized i’m sorry. this is really hard to talk about. i realized that i had to defecate and that was pushing on my bladder in such a way that unless i could get that out, i wouldn’t be able to pee urinate. so, when i was taken back into the restroom, i explained to the woman that i was really sorry. things were in the way. i have to get them out before i’d be able to pee. so, she watched me as i defecated. before i was done, she she told me to flush, which is a little bit hard to do when you’re holding a specimen cup, defecating, and you don’t know which side the handle is on. and she looked so disgusted, and i felt so ashamed, but i was able then to pee in a cup. q. thank you. i’m sorry to have to ask you these questions. i had to speak with a wphp social worker via skype every month. i told her that it was really, really hard for me to go through this over and over. her indifferent response was “it’s just for another few months”. all of my urine tests were negative for any substance licit or illicit but they did not allow this invasive testing to cease. much, much later (more than a year after i quit the program), i was informed that wphp could have tested other body fluids (saliva or blood), but the wphp did not offer this as an alternative. the wphp was absolutely aware that i was a survivor of sexual assault and was having trauma due to the witnessed urine testing. i cannot describe how demoralizing it was, knowing that strangers were being paid to look at my genitals when it was unnecessary. the forensic urine testing was also very expensive, but i knew that if i refused to comply with all of their demands, i would be reported to the wmc, at the time they were known as medical quality assurance committee (mqac), and that my license could be license suspended or revoked. needless to say, during this time, my anxiety grew worse. the wphp told me that the medication i had been taking for anxiety and insomnia was no longer an option. in fact no treatment for anxiety or insomnia was allowed including over the counter medications. in fact, medications such as diphenhydramine, albuterol, robitussin, etc. are also not allowed; nor is hand sanitizer. the wphp required me to discontinue clonazepam without consulting my prescribing physician. unsurprisingly, i began to experience a recurrence of severe insomnia, nightmares, and the worst anxiety of my life. this led to a 4 day stretch when i did not sleep at all. it was utterly disabling. i knew that my physical and mental health were being damaged. i also know that i was no longer in a condition to treat patients given my lack of sleep and anxiety. it was at this point that i preemptively left my job. before i was sent to wphp, no one had any concerns about my skill or safety to practice medicine. no patient harm occurred or was alleged. no patient complained about the care i provided. but in january 2018, i quit my job thinking that it would end the psychological torture of the wphp; because i stopped complying with wphp, i was reported to the wmc who suspended my license. the washington assistant attorney general prosecuting my case first tried to get me to settle my case; i refused to do this. she then tried to convince me to have a closed hearing which i also refused. during my hearing with the wmc the assistant director of the wphp stated that i was safe to practice up until i stopped complying with its demands. however, the inverse was the case because of wphp, i felt unsafe to practice and ceased complying with wphp in order to restore my health. at my hearing, the assistant director of the wphp stated that my witnessed urine collections were so frequent because they suspected i would exploit any amount of time between screenings to abuse drugs or alcohol. their baseline expectation is that doctors are addicts and frauds. the assistant director stated that the reason full genital inspection was necessary, including witnessed removal of tampons, was because i might put a balloon filled with someone else’s urine in my vagina. the judge presiding over the hearing made the decision that in order to get my license back, i would have to do whatever the wmc said to do, even if that meant sending me back to wphp. the judge made this decision because no wmc members were present at my hearing they all cancelled at the last minute the prior evening. were it a requirement to go back to the wphp i never would. they required me to undergo and relive sexual assault. i would never consent to going back to an abuser. i lost everything after being referred to wphp. i lost my job, my medical license, and shortly thereafter, my board certification from the american board of psychiatry and neurology. i was reported to the national physician databank which will hinder any potential future job offers were my license to be reinstated. i also lost my health and wellbeing. to this day i wonder how, were i able to go back into practice, i could be better at helping; i am also not sure how anything about this process was to help my communication skills. for doctors and other health care professionals: what happened to me could happen to you. it could happen to any physician who is referred to wphp, and likely any php nationwide. the director of the wphp is the president-elect of the federation of state physician health programs. he is responsible for what happened to me and he will soon be presiding over every php in the us. he is also dismissive of and possibly unaware of the high morbidity and mortality of physicians; in fact, he is more concerned about his stakeholders than the physicians who have been harmed via the wphp and fsphp: “[t]here remains a small minority of physicians who are not willing or able to effectively engage with their state physician health program (php). [page 104] [qualitative research in medicine & healthcare 2019; 3:8638] article no nco mm er cia l u se on ly such cases are often complicated and heartbreaking, resulting in a cascade of distressing personal and professional consequences that can irrevocably impact the physician, colleagues, patients and families. under these circumstances, it is not surprising that a few will become disgruntled, intent on unfairly disparaging phps and the php model. their public protestations and allegations are shielded from scrutiny by strict confidentiality protections that preclude phps from responding with facts that might prove illuminating. these one-sided stories can generate sympathetic support from well-intentioned, but often misguided, champions of perceived injustice who draw upon these anecdotes as evidence that phps mistreat physicians and that the php model is broken. this phenomenon is not new or unexpected given the nature of our work and, because most know otherwise, it has not appreciably tarnished wphp’s reputation or weakened our stakeholders’ support.” i would like to point out that this was published approximately one week after i, along with others, made statements at the washington state medical association on october 12, 2019 regarding harm suffered at the hands of the wphp. to be told that our stories are essentially value-less and ineffective at ‘tarnishing the reputation of the wphp” or weakening the support of their stakeholders is telling in terms of the priority of the whpp the wphp is by no means an entity in place to ‘help’ physicians. to me it also means that there are countless others out there who have also suffered harm at the hands of the wphp who have not been able to speak out. some of these it is unknown just how many are due to death. as it stands, the wphp had not been collecting data on the cases of physician suicide on the watch of the wphp, which is why the resolution was a necessity. the rate of suicide by physicians is higher than expected even when estimated by other medical professionals.10 the washington state medical association (wsma) just passed resolutions to start tracking the rate of physician suicide, including those involved with the wphp and the state medical board, at their meeting on october 12-13, 2019. it is astounding to me that the wphp spoke out against the wphp-related resolution9. since this experience, i have learned that it has happened to other physicians.12,21-26 one of the most recent reports is from september 29, 2019.27 at a time of health care shortage, it is appalling that medical boards allow the phps to abuse physicians. i am not surprised that suicides have occurred. in fact, the suicide rate of physicians is the highest of any profession in the country. in the midst of my experience with the wphp, i almost died by my own hand more than once. i am actually surprised that i am still alive today. because of the wphp i stared death in the face and yet, i somehow survived. beyond the damage i have suffered, what happened to me had serious adverse effects on my family, colleagues, and patients. the medical board and wphp do not care about that. wphp’s demands cost me millions of dollars in future lost income and so much more that is not financial in nature. the medical board and the wphp also cost me my career and nearly my lifeand yet i am somehow still alive. i am grateful to the attorneys, politicians, and other advocates who are stepping up to confront this. i still, at night, often lie awake thinking of my patients; however, it is not crippling as i have access to helpful medication again. it breaks my heart thinking how badly i wanted to help them and prevent their suffering and yet could not. i went into medicine with express desire to help and heal. i will never let that go. i did, however, take a vow to first do no harm. the best thing that i have ever done was to leave my job when i realized that an organization led by psychiatrists many of whom are in their positions as part of their rehabilitation from substance use disorder28 was causing me harm. this harm is something from which i will never fully recover. they espouse ‘recovery’ which in their model is something which will never end. the concept of recovery is that you will eventually recover from the illness or injury. their concept of recovery is a lifelong state of inertia. of course, the medical board and the wphp were decidedly unsympathetic as to the harm they caused. this became evident at their statements at the wsma and as well as chris bundy’s newsletter article shortly published shortly thereafter22 which are clearly exhibiting gas lighting toward those who have been harmed at their hand. i fight against the stigma toward mental health troubles which are no more than the normal responses of what we experience in our profession but this experience made it clear to me that until regulatory bodies which reinforce stigma are destroyed and rebuilt, more doctors will continue to commit suicide as a way out. i would like to iterate that my near-suicide was not due to any medication; lack of access to a necessary medication was paramount. i know, without question, that had i had access to the medication which was instrumental in controlling my anxiety, i would still be a practicing physician. i would not have walked away from the profession that i spent more than a decade training for. for me, the removal of a medication was far more disabling than anything else. i’m no longer just a survivor of sexual assault; i am a survivor of an additional form of repeated sexual assault at the hands of the wphp that was required as a condition for me to continue working in my career. most importantly, i am now the survivor of near-suicide caused by a so-called physician ‘health’ program, which among many other abuses, subjected me to cruel dehumanizing experiences and forcing me to relive the trauma of prior sexual assault. because of everything i am not able to be a prac [qualitative research in medicine & healthcare 2019; 3:8638] [page 105] special issue on physician mental health no nco mm er cia l u se on ly ticing physician, so i am now working as a cheese monger. but i am alive. nevertheless, i have persisted. and i will not keep quiet. not anymore. https://www.youtube.com/watch?v=qzd05-zvqfs references 1. mata da, ramos ma, bansal n, et al. prevalence of depression and depressive symptoms among resident physicians: a systematic review and meta-analysis. jama 2015;314:2373-83. 2. wright j. in the belly of the american society of addiction medicine beast. the stanton peele addiction website 2000. available from: https://www.peele.net/lib/talbott.html. accessed: november 2019. 3. gold kj, andrew lb, goldman eb, schwenk tl. i would never want to have a mental health diagnosis on my record: a survey of female physicians on mental health diagnosis, treatment, and reporting. gen hosp psy 2016;43:51-7. 4. miles sh. a piece of my mind. a challenge to licensing boards: the stigma of mental illness. jama 1998;280:865. 5. rose kd, rosow i. physicians who kill themselves. arch gen psych 1973;29:800-5. 6. andrew lb. physician suicide. medscape 2018. available from: https://emedicine.medscape.com/article/806779overview. accessed: november 2019. 7. lindeman s, laara e, hakko h, lonnqvist j. a systematic review on gender-specific suicide mortality in medical doctors. bjp 1196;168:274-9. 8. giles sm. insurance helps to brush physician depression under the rug. cmaj 2018;190:e227. 9. collier r. physician suicide too often “brushed under the rug”. cmaj 2017;189:e1240-1. 10. gavin k. study: physicians don’t report or treat their own mental illness due to stigma. university of michigan health 2016. available from: https://labblog.uofmhealth.org/industry-dx/study-physicians-dont-report-or-treat-their-own-mental-illness-due-to-stigma accessed: november 2019. 11. sinha p. why do doctors commit suicide? new york times 2014. available from: https://www.nytimes.com/2014/09/ 05/opinion/why-do-doctors-commit-suicide.html accessed: november 2019. 12. anderson p. physician health programs: more harm than good? medscape 2015. available from: https://www.medscape.com/viewarticle/849772. accessed: november 2019. 13. the lancet. physician burnout: the need to rehumanise health systems. lancet 2019;394:1591. 14. devitt m. massachusetts groups call physician burnout public health crisis. american association of family physicians 2019. available from: https://www.aafp.org/news/focus-onphysician-well-being/20190208burnoutcrisis.html. accessed: november 2019. 15. american society for suicide prevention. healthcare professional burnout, depression and suicide prevention. available from: https://afsp.org/our-work/education/healthcareprofessional-burnout-depression-suicide-prevention/ accessed: november 2019. 16. dagnone jd. commentary: the physician as person framework: how human nature impacts empathy, depression, burnout, and the practice of medicine. can med educ j 2017;8:e97-8. available from: https://www.ncbi.nlm.nih. gov/pmc/articles/pmc5766225/ 17. wake forest baptist health [internet]. about the press ganey survey. available from: https://lexington.wakehealth.edu/ press-ganey-survey.htm accessed: november 2019. 18. pearson r. when doctors can’t afford to feel. daily beast 2017. available from: https://www.thedailybeast.com/whendoctors-cant-afford-to-feel accessed: november 2019. 19. emmons rs, manion k, andrew lb. systematic abuse and misuse of psychiatry in the medical regulatory-therapeutic complex. j am physic surg 2018;23:110-4. available from: https://www.jpands.org/vol23no4/emmons.pdf 20. lawson nd, boyd jw. how broad are state physician health program descriptions of physician impairment? subst abuse treat prev policy 2018;13:30. 21. disrupted physician 2015 [internet]. gay doctor coerced by physician health program (php) into mandated 12-step treatment and monitoring for sex addiction: the slippery slope begins. available from: https://disruptedphysician. com/2015/05/20/gay-doctor-coerced-by-physician-healthprogram-php-into-mandated-12-step-treatment-and-monitoring-for-sex-addiction-the-slippery-slope-begins-2/ accessed: november 2019. 22. bundy c. wphp report: setting the record straight, part 1. washington medical commission 2019. available from: https://wmc.wa.gov/sites/default/files/public/newsletter/4. wphpreport.pdf accessed: november 2019. 23. glaser g. american doctors are killing themselves and no one is talking about it. daily beast 2015. available from: https://www.thedailybeast.com/american-doctors-arekilling-themselves-and-no-one-is-talking-about-it. accessed: november 2019. 24. doctor left destitute after seeking help from physician health program. ksdk 2019. available from: https://www.ksdk. com/article/news/local/doctor-left-destitute-after-seekinghelp-from-physician-health-program/63-99720f38-5c5c43c6-9c4c-c0f522ddc8c4 accessed: november 2019 25. med school tutors 2017 [internet]. (meded)itorial: the dark side of physician health programs. available from: https://www.medschooltutors.com/blog/the-dark-side-ofphysician-health-programs. accessed: november 2019. 26. disrupted physician [internet]. letters from those abused and afraid. available from: https://disruptedphysician.com/ letters/ accessed: november 2019. 27. wible p. beloved doctor dies in physician health program. her husband wants to know why. ideal medical care 2019. available from: https://www.idealmedicalcare.org/beloveddoctor-dies-in-physician-health-program-her-husbandwants-to-know-why/ accessed: november 2019. 28. disrupted physician 2014 [internet]. three shells and a peaasam, fsphp, and lmd. available from: https://disruptedphysician.com/2014/03/16/three-shells-and-a-pea-asam-f sphp-and-lmd/ accessed: november 2019. [page 106] [qualitative research in medicine & healthcare 2019; 3:8638] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2020; 4:8688] [page 13] introduction social work is strongly client-based, and one of the main reasons that social workers choose this career lies in its focus on relationships with clients.1 previous research on client-worker relationships in the social services sector indicated that clients view communication and interaction as important. they expect a friendship style of interaction and emphasize their wish for informality and the most appreciated social worker qualities are associated with respect, empathy, listening, and warmth.2 however, social workers have a wide variety of communication styles and skills.3 for example, child and family social workers appear to use a confrontational style of communication in which a lack of empathy is typical.4 in addition to challenges with communication skills, client-worker relationships include various tensions due to the nature of social work. client-worker relationships in the social services sector are affected by different kinds of power and dependency relations and pressures related to welfare and justice.5 furthermore, social workers experience a high degree of role ambiguity and role conflict, which manifest in discrepancies between ideal and actual work outcomes.1 in addition, social workers have a difficult time avoiding being viewed as the other, as well as effectively making themselves understood.6 negative images and uncertain identities7 harm their cooperation with clients and are associated with burnout and dissatisfaction with their work,8 threatening social workers’ well-being. additionally, tension between the philosophy of social work and growing work demands,1 such as the value conflict between anthropocentrism and managerialism,7 may hinder the client-centered approach of the service. previous research1-7 has clearly shown the challenges and tensions of social work, but how this paradoxicality is manifested in the client-worker relationship has not yet been studied. the tensions may lead to challenges in the collaborative client-worker relationship, which aims not only to support clients’ welfare but also to offer workers opportunities to achieve personal accomplishments. the current study takes a relational dialectics theory (rdt)9 approach to describe how relational contradictions of client-worker relationships are manifested in the talk of disability service workers. we pursue this aim by identifying discourses and analyzing the types of meanings that are created in the interplay of these discourses.9 specifically, we observed client-worker relationships from an rdt perspective and concentrated on contradicthe discursive struggles of the client–worker relationship in the social services hanna nykänen and leena mikkola department of language and communication studies university of jyvaskyla, finland abstract this study examines how disability service workers identify the discourses of the client-worker relationships. we studied the clientworker relationship from the perspective of the relational dialectics theory with a focus on relational contradictions and the meanings created within discursive struggles. we analyzed the interview data from 22 social workers using contrapuntal analysis. according to the social workers’ perceptions, two discursive struggles exist in client-worker relationships: i) the struggle of integration, consisting of the contradiction of the ideal and the real and the contradiction of closeness and reservedness and ii) the struggle of certainty, consisting of the contradiction of predictability and novelty and the contradiction of openness and closedness. these struggles and contradictions arranges on the societal and relational frames to fully depict the nature of social work. overall, our analysis shows that the client-worker relationship is both bound to the norms of a professional and a close interpersonal relationship, making its study particularly interesting. correspondence: hanna nykänen, department of language and communication studies, university of jyvaskyla, p.o. box 35 (abuilding) fi-40014 university of jyvaskyla e-mail: hanna.k.nykanen@jyu.fi tel.: +358400630327 key words: client-social worker relationships; contrapuntal analysis; relational dialectics theory; social services; interviews. conference presentations: this research has been presented in ica 69th international conference, washington dc, usa, 26.5.2019. conflict of interest: the authors declare no potential conflict of interests. received for publication: 18 november 2019. accepted for publication: 6 june 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:13-21 doi:10.4081/qrmh.2020.8688 qualitative research in medicine & healthcare 2020; volume 4:13-21 no nco mm er cia l u se on ly tions in these relationships to identify relationship-based tensions and the meanings of the relationships that are constructed in the interplay of these tensions. theory rdt is baxter and montgomery’s10 theory of relational meaning making, which explains how the identity of an individual and his/her interactive relationships are built through language. baxter’s9 elaborated and remodeled the theory, rdt 2.0, guides the rationale for this study. the theory is based on bakhtin’s11 ideas about dialogism and the creation of meanings through the interaction of competing and often opposing discourses. in this study, we refer to discourse as a meaning system—that is, a set of claims and suggestions that combine to form a particular meaning. contrary discourses, in turn, form contradictions.9 baxter and montgomery10 identified three main contradictions that appear in relationships: i) the contradiction of autonomy-connection refers to the tension between aims for independence and demands for integration, ii) the contradiction of novelty-predictability consists of seeking novelty while simultaneously trusting the safety of stability, and iii) the contradiction of openness-closedness refers to simultaneously sharing information and trying to require privacy from others. baxter and montgomery10 defined the contradictions as discourse pairs that are inherent in all social life. thus, they are not interpersonal conflicts, they are not charged positively or negatively, and they do not require resolution. contradictions are always present, and, when we balance them, we create meanings. rdt is an interpretative theory that offers alternative perspectives for communicative phenomena compared to positivist theories, which aim for predictability. in this theory, the key focus shifts away from the individuals and focuses on the interaction and language of the relationship parties.9 according to baxter,9 the contradictions formed by discourses are discovered in language utterance chains, which consist of individual utterances. each utterance is built on an interface between the past and the present. the distal already-spoken dimension links the utterance to the existing discourses of a larger culture. the proximal already-spoken dimension links the utterance to what has been said in this specific relationship, affecting how statements are expressed and interpreted. the construction of utterances is also influenced by anticipation of the party’s acceptance both in this specific relationship (proximal not-yet-spoken) and outside the relationship in the form of societal responses (distal not-yet-spoken). all of these dimensions thus influence how utterances are formed, as well as how meanings are generated through interaction. power is a significant actor in rdt.9 however, power is a feature of the discourse rather than a feature of the actors in the relationship. power is perceived by analyzing how strong discourses are conveyed in the text. it is perfectly normal that the discourses in the text are not equally strong but are partly centripetal and partly centrifugal. baxter9 explained that a discourse takes a centripetal position when it is given greater power or importance; in other words, the discourse is accepted as normative or natural. when a discourse is given a less powerful and marginalized position, it is considered to have a centripetal role and is categorized as unnatural. rdt was developed and has mostly been used to study close relationships,12,13 although it has been applied to health services research in a few studies,14-19 which primarily focused on roles and relationships involving doctors, patients, and nurses. health care relationships include many challenging interactions, and understanding their relational contradictions is important in order to develop communication. closeness is an essential part of the health care relationship; this is especially true in challenging situations, where balancing becomes harder and emphasis easily shifts towards distance.14 in addition, contextual factors may create contradictions, which then interpenetrate10 the relational contradictions experienced in interpersonal relationships.15 the topics of interaction in the health care context are sometimes tough. studies demonstrate the applicability of relational contradictions in the context of end-of-life communication in order to provide physicians with improved communication skills to address the challenges that dealing with death produces in their client-worker relationships. amati and hannawa16 noted that relational contradictions are always present in client-worker interactions; they also identified new contradictions, such as desire versus ability and standardization versus personalization, and authenticated the three original contradictions of autonomy-connection, predictability-novelty, and openness-closedness. in addition to challenging topics of interaction, workload and pressure also create tensions in client-worker relationships in health care settings. for example, physicians in emergency departments (eds) favor efficient communication at the expense of comprehension or rapport; this is understandable due to the fast-spaced nature of eds, but it does not support the idea that patientcentered perspectives are usually the main objective of health care relationships.17 challenges occur also in client-worker discussions of diabetes management. o’hara and shue18 studied the client-worker relationship by analyzing diabetes management discussions between patients and physicians. they realized that understanding these discourses and their interplay helps physicians focus on the cultural discourse that shapes their own and their clients’ views of diabetes management, as well as notice the transformational possibilities that can occur in treatment plan discussions. in addition, peltola and isotalus19 explored competing discourses in type 2 diabetes management by analyzing pa[page 14] [qualitative research in medicine & healthcare 2020; 4:8688] article no nco mm er cia l u se on ly tients’ descriptions of interactions with their health care professionals. they found a new struggling discourse pair—having the right to care versus deserving care— which had not previously been emphasized as a central contradiction. although applications in the health care context indicate that rdt is suitable for describing and explaining client-health care provider interactions and relationships, and although there is evidence of a different kind of contradiction in client-worker relationships in the social services sector,5 rdt has not been applied in the context of social services. the only themes covered by rdt from the social services point of view have been adoption and foster families.20-22 those studies researched the discursive construction of family but did not emphasize the relationship between the client and the worker. in the present study, we explore the relational contradictions of the client-worker relationship in the context of disability services. the relationship is interesting to explore using rdt because it is a long-term dependencybased relationship, which includes many pressures, such as controlling versus helping, in its basic nature. moreover, to achieve successful collaborative relationships, social workers need to identify interpersonal contradictions and learn to manage them. aim of the study this study aimed to understand the social construction of the client-worker relationship in disability services by identifying what kinds of related discourses disability service workers manifest in their talk. we study the clientworker relationship from the rdt perspective, which concentrates on relational contradictions and the meanings created in those discursive struggles. the research questions (rqs) are as follows: i) rq1: what competing discourses, if any, social workers’ present in their talk about client-worker relationships? ii) rq2: what kinds of meanings regarding the identity of these relationships the competing discourses create? answering the first question involved analyzing interview data and identifying various discourses that manifested in the social workers’ talk. answering the second question entailed a continuation of the analysis process by elaborating how the discourses interacted with each other, as well as what kinds of meanings the interplay creates. rdt provided insights into how the meaning of the social workers create the identity of the client-worker relationship in their talk. communication practices constitute relationships, and the communication parties author selves in the interaction.23 the client-worker relationship, in this study, is a professional relationship between a disability service worker and a disabled client or his/her next of kin, which functions as a service and counselling relationship. materials and methods the context in finland, the ministry of social affairs and health is responsible for promoting the health and well-being of people with disabilities, developing the tightly interdependent totality of social and health care services, and securing each client’s livelihood. various laws, such as the social welfare act, stipulate disability services. rights to equality, participation, and necessary services and support are the three principles of the finnish policy concerning individuals with disabilities. the aim of the finnish disability policy is to support the autonomy and agency of individuals living with disabilities. municipalities organize and finance services and support for everyday life. social workers develop a personal service plan for clients and make decisions regarding the services and support that the clients need, such as transportation services and personal assistance.24 a social worker is assigned to a client based on the region in which the client lives. the client cannot choose the person with whom he/she works. data we interviewed social services workers from two different organizations for a total of 22 interviews. this was a two-researcher study, the first author carried a main responsibility of the interviews. the first data set consisted of 12 in-depth interviews25 of social service workers from the same disability services unit. the length of their careers ranged from a couple of months to 20 years. one participant was male, and 11 were female. we asked open-ended questions, such as how would you describe your work/client relationships? in addition, participants provided examples about various situations at work and with clients. themes about successful/unsuccessful interactions, general reasons for meeting clients, receiving feedback, instructions for working with clients, power relations, client expectations, conflicts, and ethical concerns were discussed. in addition, we also provided questions about peer and supervisor relationships. after conducted the first dataset, we transcribed and coded it, and afterwards gathered the second one. the second data set consisted of 10 in-depth interviews of social workers from a different disability service organization. their careers varied from a couple of years to dozens, but all of the participants had only worked in their current unit for a couple of years. most of them had a long history of working with disabled clients. all of the participants were female. first author conducted also the second set of interviews and she asked the same open-ended questions as in the previous set, along with questions derived from the earlier analysis to determine whether the social workers recognized the contradictions that emerged from the first data set. we did not directly name the contradictions in [qualitative research in medicine & healthcare 2020; 4:8688] [page 15] article no nco mm er cia l u se on ly the questions; but instead described the themes and asked the social workers to give examples of interactional situations with clients in which they identified the specific theme and how they felt it affected the client-worker relationship. interviewees decided whether they want to give the interview in the meeting room of social services office or on campus at the university. the interviews took anywhere from 40 to 85 minutes, varying with each participant. the average duration was 55 minutes. we transcribed all the interviews verbatim, yielding 283 pages of transcribed text with lato font and line spacing set at 1.07. method of analysis we chose to analyze the data using contrapuntal analysis,9 which is a form of discourse analysis related to rdt 2.0. according to baxter,9 the key focus of contrapuntal analysis is the interaction of competing discourses, while basic units of interaction, utterances, and utterance chains lie at the core of the analysis. this analysis makes interaction-based discourses visible so that the researcher is able to understand how discourses are maintained, how they construct meaning, and how the balance among discourses affects the client-worker relationship. discourses can interact through diachronic separation or synchronic interplay.9 in diachronic separation, the dominance of the discourse changes through different periods of time or the power of the discourse varies within different contexts or themes. in synchronic interplay, there is a co-occurrence of multiple discourses in a given period of time; an example of this kind of interplay is a non-antagonist struggle in which multiple discourses are identified in actors’ utterances. according to baxter,9 a non-antagonist struggle is common for interview data in which one party of a relationship constructs the meaning of the relationship. three different discourse markers may help identify competing discourses in a text: negating (denying one discourse entirely), countering (replacing the obvious discourse), and entertaining (indicating that the given discourse is only one of many possibilities).9 conducting the analysis the first author coded the data and conducted the analysis of the interplay of the discourses, however together we critically discussed all interpretations to strengthen the credibility of the analysis. the analysis was initiated by importing the transcribed interview data into the atlas.ti application. the interviews of the first data set formed an entirety, which was rationalized because the key focus of this study is understanding how contradictions in the client-social worker relationships were manifested in the utterances of social service workers. therefore, all of the contradictions interpenetrate utterances appearing in the data as a whole instead of focusing in one interviewee’s utterances. first, the first author coded the text multiple times to determine possible initial coding categories related to the client-worker relationship.26 we then captured what was said in the text and what was indicated by the relationship’s identity by initial coding categories that consisted of meanings that we combined into semantic themes, as in discourses. for example, the sentence: it was so clear to me that i am here for the clients was coded as integration (initial coding) and categorized into the semantic theme of closeness. second, after identifying the semantic themes, we initiated an in-depth analysis of interplaying discourses. this part of analysis the first author conducted by exploring whether multiple discourses were present in the text and, if so, whether they had any interplay with each other. the analysis of the interplay meant identifying the discursive markers9 as negating, countering, or entertaining. in the example below, the word but reveals the interplay. this example we labelled as synchronic interplay that led to a non-antagonist struggle. and the other one [client] is over the moon like this is awesome. although their child got diagnosed and will not get better, they will have this kind of worker who they can use and turn to, and this worker will support them and helps them when necessary. but, then we have these [clients] who just make calls [saying] that do not come here. for the second dataset, we focused the analysis on the interplay presented around the already identified discourses. the next example is an excerpt in which a social worker described how distance and closeness resonated in his/her client relationship. the social worker presents the working role itself as being generally distant and something that the worker did not want to be seen. it is really important to me that the client relationship works and i am seen [as something] other than [an] authority [figure]. of course, [i want to be seen] as [a] professional, but [also] as [a] human, not that you are going to see just some auntie social worker. in the service plans, i am using suitable language, but many of them cannot read so i’m trying to use [language in] ways [so] that it does not feel like a cold review message but that there is some kind foreword and flower or something. the coding did not proceed as linearly as described because analysis is a recursive process.26 we coded the data multiple times in order to obtain an effective hold on the totality of the data and understand the meanings constructed in the interplay of the contradictions, as well as the discourses forming the contradictions. all of the interview examples presented here and in the results section, we have carefully translated from finnish to english while striving to maintain the original tone and meaning. ethical council of university of jyväskylä has approved the research plan. the researchers have followed the ethical principles27 throughout the study, including re[page 16] [qualitative research in medicine & healthcare 2020; 4:8688] article no nco mm er cia l u se on ly specting the integrity of the subjects and providing extensive information about the study prior to the data collection process. participation was voluntary, and the participants provided written consent to the researchers so that their interview data could be used for research purposes. to support the credibility of the results, we have presented examples of the interviews. in the discussion section, we will indicate how previous research compares with our results. findings according to the social workers’ talk, their clientworker relationships consisted of four contradictions: i) ideal-real, ii) closeness-reservedness, iii) predictabilitynovelty, and iv) openness-closedness. these four contradictions, in turn, formed two discursive struggles, as described in table 1: i) the struggle of integration, consisting of the contradiction of ideal and real and the contradiction of closeness and reservedness and ii) the struggle of certainty, consisting of the contradiction of predictability and novelty and the contradiction of openness and closedness. table 1 also illustrates how these contradictions were arranged in regard to the societal frame and the relational frame to describe the balancing of close interpersonal and professional relationships. the frames link to the idea of the proximal and distal sites of the utterances. however, they are not referring to the strategy of reframing.9 in the societal frame, the main influence on contradictions originates from outside the client-worker relationship, meaning that the utterances appear to be in the distal already-spoken dimension. the struggles are largely societally constructed based on the context in which the relationship occurs. society sets the rules and limits for the relationship and guides its aims and functions. in the relational frame, contradictions rely more heavily on the interaction between the two parties in the relationship. these struggles are present when social workers describe communication in client-worker relationships. we label the struggles here as contradictions of the proximal already-spoken dimension, although they are only retrospectively described by one party of the relationship. the discursive struggle of integration the struggle of integration emphasizes manifestations of the creation of a rewarding cooperative relationship. table 2 presents the meanings of expected identity/otherness and supportiveness/facelessness created in struggle of integration. societal frame the discursive struggle of integration emerges in the competition between discourse of the ideal and discourse of the real. this contradiction supports the meanings of expected identity or detracts from expectations creating otherness when actors’ goals are authenticated or diminished, respectively. the contradiction is linked to the explicated mission of the social services sector, which is the provision of care. however, when social workers attempt to support the welfare of their clients, the workers may also constrict their clients’ freedoms and rights since the system, the budget, and the law set the boundaries on what and how much help can be provided. client and worker expectations concerning the nature of the relationship are not always aligned with the real. this contradiction causes tension concerning reciprocal appreciation in which clients conclude that social workers are violating or ignoring their civil rights, and social workers are uncertain about their career identities when they are unable to help. this contradiction of ideal-real possesses features of baxter and montgomery’s10 contradiction of autonomydependency. the system provided by society is expected to help clients achieve as autonomous a life as possible even though the clients are truly dependent upon social services. in some cases, the system makes the clients even more dependent upon the services than is necessary. a constant battle is thus waged between helping but not restricting and seeking help while remaining independent. the examples below demonstrate how social workers describe the non-antagonist struggle9 between the ideal and the real by showing various semantic positions in their ut [qualitative research in medicine & healthcare 2020; 4:8688] [page 17] article table 1. struggles, contradictions, and frames. societal frame relational frame integration struggle ideal-real contradiction closeness-reservedness contradiction certainty struggle predictability-novelty contradiction openness-closedness contradiction table 2. the constructed meanings in the discursive struggle of integration. contradiction frame constructed meaning ideal-real societal expected identity/otherness closeness-reservedness relational supportiveness/facelessness no nco mm er cia l u se on ly terances. for example, use of the phrase i should see, indicates that there is also a possibility that the social worker’s decision is not the best one for the client: i go to the client’s home, and there we think and see what is the client’s need for the day. what is the thing we should be doing? and because, they are people who need special support, i, as a worker, should see what is beneficial for the client and what is good, although he wouldn’t himself see it the same way as i do. antagonist struggles were also shared by social workers when they described challenging situations in which clients’ expectations truly differed from reality: yes, the situation still is that the mother feels that the society cannot support them enough, although they have a really strong [set of] services already. nevertheless, no services can be tailored so that they could be totally individualized. there are always specific borderlines. when discussing the burdensome characteristics of social service workers’ duties, there were also hints at a serious-playful struggle. a serious-playful struggle emphasizes the tone of the utterances. in this struggle, the social workers created a meaning of their own management skills to protect their reputations. in the example below, the interviewee acknowledged that sometimes the feedback he/she receives is rough while simultaneously diminishing that roughness with laughter, exemplifying the serious-playful struggle: hmm, sometimes it gets under my skin so that i, as a person, feel bad, but most of the time i can take it. it just goes with the career, this kind of [situation] (laughing) that you can face anything. [it] go[es] in one ear and out the other, [as] if it is groundless. otherwise, you cannot cope with this. relational frame in the relational frame, the struggle of integration consists of the contradiction of closeness-reservedness. the social workers demonstrated this contradiction by describing their interactions with their clients, including longing for more personal conversations in which they might chat, lighten the atmosphere, and boost the collaboration. closeness helps the social service workers endure rough working days and makes the interactions more pleasant, which may encourage cooperation. in other words, relational closeness creates meanings of supportiveness. meanwhile, reservedness was an essential element of the relationship. a client and a social worker do not have an intimate relationship; although their aim is to work together to help the client, a state of formality is retained. face-to-face meetings and laws used in decision making create a huge gap between the discourse of closeness and reservedness, which, in turn, creates meanings of facelessness. the segmenting9 of closeness and reservedness is illustrated in the following example, in which a worker describes how the closeness of the previous interaction made the official part of the work—the decision making—harder. reservedness helps social workers to stay objective in order to produce equal decisions, and not to admit any more to that client than you do to another client: like i have said, the equality, when it feels that sometimes you find the connection with the client straight away. then, you have to be really careful because you cannot admit any more to that client than the s-client [inappropriate phrase]. the social workers noted that closeness and reservedness are both needed, but the discourse of reservedness becomes more powerful—and centripetal—when they are declining clients’ applications. the discursive struggle of certainty the struggle of certainty emphasizes manifestations of certainty in the relationship. the dynamism of society creates uncertainty about the context in which the relationship operates, and challenges related to openness bring a cautious factor to the interaction and communication between the client and the social services worker. these struggles create the meanings of dynamism/stability and understanding/insensitivity like presented in table 3. societal frame the discursive struggle of certainty illustrates the dynamic societal context of the relationship that the contradiction describes as predictability–novelty. the contradiction of predictability and novelty creates the meanings of the stability or dynamism nature of the relationship. society is changing, and all kinds of reforms are remodeling the social and health services. laws change the requirements for the provided services, and the addition of new clients with different disabilities begin to challenge the functionality of the system. social service workers must constantly learn new approaches and methods to stay up-to-date and work hard to find suitable services to help new clients. dynamism also brings challenges in terms of offering equal service to everyone, which is one of the [page 18] [qualitative research in medicine & healthcare 2020; 4:8688] article table 3. the constructed meanings in the discursive struggle of certainty. contradiction frame constructed meaning predictability-novelty societal dynamism/stability openness-closedness relational understanding/insensitivity no nco mm er cia l u se on ly main aims of social work. in the following example, the social worker states that all the changes of society, law and work makes it harder to follow consistent line while making decisions and working with the clients. yes, indeed [changes affect our work]. i have thought about it and leaned on other[s] when trying to find the consistent alignment with the decisions made. we are not an old organization, but we should have consistent lines, at least within this area. but, even that is impossible, because the implementation methods differ in [the] municipalities. and we have discussed that disability services are like no other. many things have to be interpreted from the law, and we have to use a lot [of] individual consideration. a lot more than in some other areas. their lines are clearer. relational frame social workers talk about the openness-closedness contradiction when describing complex situations, leading to misunderstandings. misunderstandings can be caused, for example, by the lack of a mutual language and shared meanings or difficulties in interpreting the law because, although the law is strong and understandable, the decisions are still based on interpretations, and some client cases are not so distinct. a mutual language refers to both an actual language, such as if clients have problems with speech production, and the language of bureaucracy. these struggles create meanings of understanding, but they also create insensitivity. openness deals with reciprocal information sharing, which is required for successful cooperation. social workers must balance how much information is sufficient for everyone, which details clients need or would like to hear, and how to reach all clients: often, in the beginning of the new client [relation]ship, they ask a very wide question: to which [services and support] i am entitled? there, you really have to watch your words, [especially] when you go through what the client needs to manage independently or as independently as possible. in addition to a non-antagonist struggle, these discourses also possess a direct-indirect struggle in which certain aspects are concealed due to using caution when saying something, which, ultimately, could be used against the social workers. a direct-indirect struggle deals with the ambiguity of meaning. here, ambiguity is assisted by disqualification,9 which functions as a way to elude or avoid the interplay of the discourses. disqualification leaves multiple interpretations existing among parties. for example, when describing their work as supporting clients, social workers used vague phrases, such as services necessary for the disability and reasonable compensation. in addition, instead of answering clients’ demands, they tell them that the decision needs to be taken to the team for further discussion. in these cases, the exact answer remains unidentified. the following example illustrates this kind of obscurity: it is unfortunate to go and say that only services necessary for the disability are admitted. sometimes the openness-closedness can vary in different themes and can escalate to total closedness, as in leaving the interactional situation. we present the extreme example of segmenting in openness-closedness is excerpt below, in which social worker ceases the interaction by hanging up the phone when the discussion was not progressing: the client may have experienced that i just hung up the phone – well actually, that is what i did, because the discussion was not leading anywhere. that is what i did. that kind of hostile talk and shouting, no one deserves to hear that. not [a] social worker or anyone else. these examples show that the social workers must take caution when interacting with clients. the social workers must be very conscious of the words they use in order to avoid misunderstandings or make promises that may not be followed through. although baxter and montgomery,10 positioned the contradiction of openness and closedness under the struggle of expression, in the present study, it was strongly linked to uncertainty in interactional situations and, therefore, positioned under the struggle of certainty. discussion this study illustrates the relational contradictions of the client-worker relationship in the social services sector, and the results show how discourses compete and are manifested in social workers’ talk. the relationship vacillates between the nature of close interpersonal and professional relationships; this is visible in the division between the societal and relational frames, which link to the proximal and distal sites of the utterances.9 these intertwined contradictions and their interplay create the meanings of the client-worker relationship in the social workers’ talk. the balance between the discourses reflects the degree to which the social workers experience the client-worker relationship as burdensome or satisfactory and how the goal of helping clients is reached. in our analysis, we arranged the contradictions into societal and relational frames, originating from the nature of social work. the client-worker relationship is a workrelated professional relationship that is not only societally constructed but also reflects features of close interpersonal relationships. the frames describe how our surrounding culture is manifested in interpersonal relationships, as well as how interpersonal relationships maintain and create social order.28 our society creates a frame within which this relationship works by arranging the parties in specific roles; they are positioned in an involuntary asymmetrical relationship but are reciprocally dependent upon each other. the autonomy and dependency in this rela [qualitative research in medicine & healthcare 2020; 4:8688] [page 19] article no nco mm er cia l u se on ly tionship are defined by the structures of the society, which lead to struggles between care and control in the clientworker relationship, as nijnatten et al.5 pointed out. therefore, our findings authenticate nijnatten et al.’s5 ideas of tension between care and coercion by showing the kinds of contradictions this tension creates in the client-worker relationship. the tension between care and control especially reflects in our findings on the contradiction of the ideal and the real. if the expected meanings of this supportive and helping relationship are destroyed in the interaction, the objective of care is easily reframed as control, especially in the clients’ point of view. in addition, according to lloyd et al.,1 social workers effectively stress the role of conflict between client advocacy and the ability to meet agency needs. social workers may also feel personally responsible when they fail to help their clients. in addition, our results show that social workers appreciate the fluent process of helping and try to minimize all uncertainty factors and challenges in order to reduce conflict concerning their professionalism. matthies6 questioned whether social work is understandable to those who are outside it; we built on this question and argue that working with these contradictions can make social work difficult even for the social workers themselves. social workers have a hard time presenting themselves as helpers in controlling and combining the roles of care and control.5 with transformative dialogue, in which the competition between the discourses vanishes and discourses are presented as equal,9 it may be possible to shift the emphasis from defending actors’ positions to a more cooperative standpoint. in that way, the client and the social worker are seen not as opposite poles but as entities that twine together, which subsequently enables the creation of new meanings. consequently, it is crucial to highlight the special nature of the client-worker relationship in disability services, including features from close interpersonal and professional relationships, in order to open up new ways to plan and apply communication in social services context. although client-worker relationships are long-lasting and cover sensitive and personal subjects, they are still workplace relationships that are accompanied by some degree of reservedness. successful cooperation additionally demands some aspects of closeness. these observations are extremely important, as client work is at the core of social work; a social worker is a key player in supporting disabled clients’ welfare in everyday life and in the wider context of improving their inclusion in society. the theoretical contribution of this study is that it demonstrates the applicability of rdt when studying client-worker relationships in the social services sector. although rdt has been primarily used to study close private-life relationships,12,13 we find that the theory is also applicable for studying contradictions among professional relationships in the social services, since these are workrelated relationships that also possess elements of close interpersonal relationships. in addition, please note that, while this research relies heavily on rdt 2.0, most research applies the earlier version of this theory,10 and only a few studies have observed client-worker interactions in the terms of rdt 2.0.18,19 baxter and braithwaite29 have critiqued existing research for simply identifying dialectical tensions and encouraged adding complexity by looking at how competing discourses interpenetrate to construct meaning in a relationship, which is done in this study. baxter9 also suggested identifying the sites of discursive struggles, which is done here by presenting these discourses in societal and relational frames. conclusions in the present findings, we have identified multiple contradictions in the client-worker relationship in the social services and emphasized how societal and relational frames of this relationship interpenetrate each other. the present study’s results can be used to advance social workers’ well-being at work by paying attention to how social workers could manage contradictions in clientworker relationships in terms of the actors’ well-being and job satisfaction. the results may also be applied to communication training aimed at helping social workers identify future contradictions in their work. furthermore, the results increase our understanding of how the clientworker relationship affects job satisfaction, as the results also describe the challenges of making social workers themselves understood.6 overall, if we learn how to manage these tensions to improve well-being, we can also affect the quality of client interactions. future studies in this research area should gather data from both parties in the client-worker relationship, such as by conducting observations or paired interviews. it would be interesting to compare the results of this study to studies in which the client is also present in order to determine how contradictions appear in that kind of data. in addition, researchers could use rdt to analyze longitudinal data, which offers a possibility to emphasize also diachronic separation. cross-sectional studies do not reveal the differences between these diachronic practices and single-voiced monologues.9 researchers could also study, social work tailored toward other than disabled clients to see if we might identify the same kinds of contradictions when observing client-worker relationships. the societal frame is an important aspect of all clientworker relationships in the social services, and it is important to untangle how that frame affects relational contradictions and the construction of meanings. to improve cooperation, social workers should strengthen the relational frame since the societal frame is beyond each actor’s power. however, every interpersonal interaction can also gradually remodel the societal frame, and that is why every meeting and interaction counts. transparent and open communication about the frames and the con[page 20] [qualitative research in medicine & healthcare 2020; 4:8688] article no nco mm er cia l u se on ly tradictions would increase the mutual understanding of the relationships’ context, rights, and duties. transparent communication can be achieved by being honest and discussing societal problems with clients while simultaneously emphasize the aims of mutual trust and relational integration. references 1. lloyd c, king r, chenoweth l. social work, stress and burnout: a review. j ment health 2002;11:255-65. 2. beresford p, croft s, adshead l. we don’t see her as social worker: a service user case study of the importance of the social worker’s relationship and humanity. brit j soc work 2008;38:1388-407. 3. forrester d, mccambridge j, waissbein c. rollnick, s. how do child and family social workers talk to parents about child welfare concerns? child abuse rev 2008;17:23-35. 4. forrester d, kershaw s, moss h, hughes l. communication skills in child protection: how do social workers talk to parents? child fam soc work 2007;13:41-51. 5. nijnatten c, hoogsteeder m, suurmond j. communication in care and coercion: institutional interaction between family supervisors and parents. brit j soc work 2001;31:705-20. 6. matthies al. the otherness of social work under neoliberal governance. nord soc work res 2013;3:149-58.  7. beddoe l. field, capital and professional identity: social work in health care. in: webb s, eds. professional identity in social work. oxon, uk: routledge; 2017. pp 122-35. 8. baldschun a, töttö p, hämäläinen j, salo, p. modeling the occupational well-being of finnish social work employees: a multigroup confirmatory factor analysis. hum serv org manage 2016;40:524-39. 9. baxter la. voicing relationships: a dialogic perspective. los angeles, ca: sage; 2011. 10. baxter la, montgomery bm. relating: dialogues and dialectics. new york, ny: guilford press; 1996. 11. bahtin m. the dialogical imagination: four essays by m. m. bakhtin. austin, tx: university of texas press; 1981. 12. baxter la. dialectical contradictions in relationship development. j soc pers relat 1990;7:68-88. 13. baxter la, simon e. relationship maintenance strategies and dialectical contradictions in personal relationships. j soc pers relat 1993;10:225-42. 14. mcguire t, dougherty ts. “paradoxing the dialectic”: the impact of patients’ sexual harassment in the discursive construction of nurses’ caregiving roles. manag commun q 2006;19:416-50. 15. olufowote jo. a dialectical perspective on informed consent to treatment: an examination of radiologists’ dilemmas and negotiations. qual health res 2011;21:839-52. 16. amati r, hannawa a. relational dialectics theory: disentangling physician-perceived tensions of end-of-life communication. health commun 2014;29:962-73. 17. dean m, oetzel j. physicians’ perspectives of managing tensions around dimensions of effective communication in the emergency department. health commun 2014;29:257-66. 18. o’hara ll, shue ck. discourses of diabetes management in patient-physician interactions. the qual rep 2018;23: 1282-300. 19. peltola m, isotalus p. competing discourses of professionalpatient relationships in type 2 diabetes management. health commun 2019;1-10. doi: 10.1080/10410236.2019.1663586. 20. suter ea, baxter la, seurer lm, thomas lj. discursive constructions of the meaning of “family” in online narratives of foster adoptive parents. commun monogr 2014;81:59-78. 21. thomas lj, scharp km. “a family for every child”: discursive constructions of “ideal” adoptive families in online foster adoption photolistings that promote adoption of children from foster care. adopt q 2017;20:44-64. 22. thomas lj, jackl ja, crowley jl. “family? … not just blood”: discursive constructions of “family” in adult, former foster children’s narratives. j of fam commun 2017;3:238-53. 23. baxter la. relationships as dialogues. pers relationships 2004;11:1-22. 24. the ministry of social affairs and health. services and support for people with disabilities. 2018. available from: https://stm.fi/en/disability-services. 25. kvale s. interviews: an introduction to qualitative research interviewing. thousand oaks, ca: sage; 1996. 26. braun v, clarke v. using thematic analysis in psychology. qual res psychol 2006;3:77-101. 27. tenk. ethical principles of research in the humanities and social and behavioural sciences and proposals for ethical review. helsinki; 2009. available from: http://www.tenk.fi/ sites/tenk.fi/files/ethicalprinciples.pdf 28. baxter, la, asbury, b. critical approaches to interpersonal communication: charting a future. in: braithwaite do, schrodt p, eds. engaging theories in interpersonal communication. 2nd ed. thousand oaks, ca: sage; 2015. pp 185-97. 29. baxter la, braithwaite do. relational dialectics theory: crafting meaning from competing discourses. in: braithwaite do, baxter la, eds. engaging theories in interpersonal communication: multiple perspectives. thousand oaks, ca: sage; 2008. pp 349-362. [qualitative research in medicine & healthcare 2020; 4:8688] [page 21] article no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2019; 3:7875] [page 1] introduction in october 2016, instagram (ig) user 1 received an email from a nurse at the reproductive endocrinology and infertility (rei) clinic where she underwent a successful fertility treatment and was monitoring an early pregnancy (user names related to images have been anonymized as user 1, 2, 3, etc.). at 2:15 p.m., user 1 read this email, captured it with a smartphone and by 2:19 p.m. posted it on her ig account without any identifying information redacted. user 1’s image caption responded to the nurse’s comment, “sorry for the typo” with “typo… that’s a pretty big, can cause you to miscarry the baby, typo. ack. this does not help my anxiety at all.” the comment section below the image (figure 1) of the email and the caption included references to institutional health systems, encouraging messages about selfadvocacy, individuals sharing their own treatment horror stories and a series of emoji. the hashtags used by user 1 made this post searchable by millions of ig followers, despite the nurse’s full name and the user’s full legal name (not the ig account name) listed in the image. it is not clear whether user 1 shared their concerns directly with the nurse and the rei practice in question, or isolated their reaction to their account on this social media platform. it is evident that a semiotic act occurred in this post, in that the discourse (e.g., through images, texts), both symbolically and literally (re)created meaning. here, the images, text and hypertext – individually and taken together – reflect the determined agency of a patient challenging the rhetoric of passivity, and signaling to the viewing audience that in the age of social media, medical mistakes or misinformation can be posted and enter the public record. the poster is raising awareness of medical errors that can and do occur; to blindly trust medical staff is unwise. the post operates as a kind of threat as well – the public airing of these errors could have professional and monetary consequences for rei practices. examining the post semiotically (through the study of signs and symbols and their meanings) offers ample material in the responses to this post (e.g., hashtagging and #ttc on instagram: a multimodal discourse analysis of the treatment experience of patients pursuing in vitro fertilization bethany johnson,1,2 margaret m. quinlan,1 nathan pope1 1department of communication studies; 2department of history, university of north carolina at charlotte, charlotte, nc, usa abstract while searching the internet for health information is now commonplace, giving and receiving medical expertise on social media platforms such as instagram (ig) is underexplored. in order to investigate the ways in which social media platforms are a resource for seeking medical expertise, we employed a multimodal discourse analysis; specifically, we focused on the hashtag #ttc and the engagement of the ig community it comprised. we examined three main themes around medical expertise during treatment indexed by the hashtag: treatment protocol choices, treatment side effects and pregnancy diagnosis/confirmation. our findings suggest that social media platforms provide a new arena in which patients can challenge medical expertise by circumventing it or adopting lay expertise instead of practitioner suggestions. we close with research implications and suggestions for further research. correspondence: margaret m. quinlan, department of communication studies, university of north carolina at charlotte, 9201 university city blvd., charlotte, nc 28223, usa. e-mail: mquinla1@uncc.edu key words: instagram; multimodal discourse analysis; imagetext; infertility; support groups. acknowledgements: we would like to thank drs. robin jensen and heather carmack for valuable feedback on this manuscript and to rachel ayers for her assistance in data collection. we are indebted to the feedback our supportive editor, dr. mariaelena bartesaghi, francesca baccino and two anonymous reviewers. contributions: the authors contributed in order of authorship. conflict of interest: the authors declare no potential conflict of interest. funding: none. conference presentation: a preliminary version of this paper was presented in 2017 at the organization for the study of communication, language, & gender, 40th annual conference, omaha, ne. received for publication: 11 october 2018. revision received: 14 february 2019. accepted for publication: 16 february 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright b. johnson et al., 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:1-14 doi:10.4081/qrmh.2019.7875 qualitative research in medicine & healthcare 2019; volume 3:1-14 no nco mm er cia l u se on ly dialogue). multimodal discourses (textual, visual, intertextual, hypertextual) confirm that account followers understood the aims of the post, promising to increase their own attentiveness to treatment protocol, calling out health systems where they supposed this type of error would occur and encouraging other readers to be aware, with one user concluding “now you’ll be questioning everything i bet.” infertility remains a pressing concern for individuals struggling to create a family, just as it was over a century ago. yet today, individuals can share their experiences with hundreds, thousands or millions of strangers in real time. the result is a unique type of intimacy, one that infertile individuals did not have access to previously. since 1878, estimates of infertility rates have hovered between 9%-11% for heterosexual couples, with outliers ranging from 6% to 20%.1-3 currently, the centers for disease control (cdc) estimates that “12% of women aged 15-44 years”,4 will experience infertility, while the national institute of child health and human development estimates “9% of men and 11% of women”,5 and the world health organization (who) project “10% of women” will experience this condition. the cdc and who define infertility as occurring after 12 months of unprotected, heterosexual sex between two cis partners. similar to the variety of percentages available infertility is described using a wide range of definitions, framing the issue as anatomical, physiological, or a reflection of demography.6 infertility remains a persistent health challenge despite advances in treatment including in vitro fertilization (ivf), intra-cytoplasmic sperm injection (icsi) and genetic testing for embryos, which emerged by the late 20th century.7,8 the mayo clinic defines ivf as “a complex series of procedures used to treat fertility or genetic problems and assist with the conception of a child” (n.p.). during ivf, mature eggs are retrieved from the ovaries and fertilized with sperm in the lab setting. later (e.g., 3, 5, or 6 days), the embryos are placed into your uterus. as for icsi (pronounced icksy), this procedure resulted from the successful experiments of dr. gianpiero palermro, who manually fertilized one egg with one sperm in 1992.9 regardless of availability, treatment (with or without medication) is expensive and many insurance companies do not offer sufficient coverage.7,10,11 aside from the procedural cost, medicines can cause uncomfortable side effects, and treatment cycles dictate schedules, placing [page 2] [qualitative research in medicine & healthcare 2019; 3:7875] article figure 1. reproductive endocrinology and infertility practice error. no nco mm er cia l u se on ly social and emotional pressures on familial and other interpersonal relationships; patients often feel isolated, which can increase anxiety.8,11-17 this isolation can result from the difficulty of the treatments (e.g., cost, side effects), but also from a lack of agreement among researchers, medical practitioners and patients on language framing and describing diagnosis and treatment. for example, physicians may reference fertility treatments for an infertility diagnosis, even when that diagnosis is unexplained. inversely, some patients never-self identify as infertile or never receive a formal diagnosis yet undergo fertility treatments. individuals may conceptualize infertility as a journey, a condition, a disease, or even a social construct and choose language that constitutes their perspective and experiences. therefore, definitions of infertility are contextual: shaped by individual and social constructs, embedded in systems of oppression.7,10-12 for example, it is not necessary to link motherhood to any individual of any gender identity,12 yet the inability to conceive is still framed as a female problem as cis women are assumed to be natural mothers.7,11 further, the technical definitions presented by many organizations maintain a heteronormative, cis-gender focus that does not address possible infertility experiences of lgbtqqia+ couples and/or individuals.12,18 given the difficulties in describing and defining infertility and the experience of fertility treatment(s), individuals who are already using social media are turning to applications (apps) like ig and facebook to discuss treatments, ask questions about doctors and supportive therapies and offer and receive emotional support.12 in our book, you’re doing it wrong! mothering, media, and medical expertise,12 we examined the impact of social media platforms on the conversation around infertility diagnosis and treatment; specifically, the long history of the phrase just relax, including how medical language shifted throughout the last century to maintain the notion that female patients could mentally control their fertility. we traced this pattern into the present, where we found it populating the methods of alternative practitioners, social media influencers and even traditional doctors on blogs, youtube, social media platforms and products like ecourses for fertility. responding to our own call for future research, we investigated communication around infertility treatment on social media. in this study, we observed the unique ways medical expertise was exchanged on ig before, during and/or after ivf treatments. the multimodal capacity of social media platforms like ig allows users to index multiple layers of information and experience by way of a single post, availing themselves of multiple discursive resources at once. in turn, these semiotic practices are recontextualized as the spoken discourse dynamics of healthcare, providing patients new strategies and vocabularies to introduce into their practitioner-patient relationships. social media use for health information while the earliest conceptualizations, frameworks, and algorithms for what became today’s social media landscape were well underway by 1965, the coding for the world wide web was not available until 1991. between 1991 and today, the majority of individuals in america gained access to the internet, web search engines and social media platforms, mainly through hand-held devices known as smartphones.13-21 after the advent of the internet and before the popularity of social media, scholars began investigating movements of individual users navigating health information collected by search engines as they sought advice and expertise online.22-24 initially, internet use focused on desktop computers, and then more portable laptops.19 today, individuals favor smartphones; as of january 2014, 56% of american adults own a smartphone.25 the prevalence of smartphone use drastically increased mobile, instant, interactive communication through social networking. today, smartphones redirect health information gathering to smartphone apps and social media platforms.13,26,27 instagram ig, one of many available social media content-sharing platforms, is now the second most used, with over 700 million active users.25 instagram launched a mere six years ago and quickly became popular because of its photo-forward character and easy editing features.28 in its first three years, ig amassed more than 150 million followers and was purchased for more than $1 billion by facebook.28 users post more than 95 million photographs per day and “like” 4.2 billion times each day.25 to use ig, individuals or groups represented by an account (i.e., users) can upload (i.e., post) photographs, videos, comments, hashtags, links, and other materials (i.e., usercontent). instagram is designed for smartphone use, since photographs, videos, text and hashtags can only be posted and hyperlinked via the mobile application. while early internet adopters preferred search engines and webmd,29,30 millennial parents (and those seeking to be parents), “spent their formative years steeped in personal technology,” according to bruce feiler of the new york times.31 as adults, this demographic favors smartphones and other portable devices (apple watch, etc.) to access social media platforms and a range of smartphone apps.26,31,32 recent research supports the idea that parents today seek information specific to parenting, including medical expertise for their babies and young children.26,27,32 deborah lupton2 addressed smartphone apps used specifically by mothers to monitor their pregnancies and the behavioral patterns and health data of their young infants (e.g., eating and sleeping times, weight). gender scholar sophia johnson26 referred to the device-ification of motherhood, an intrusion by and integration of social media platforms in the everyday lives of mother and child [qualitative research in medicine & healthcare 2019; 3:7875] [page 3] article no nco mm er cia l u se on ly through smartphone apps, tablets and mobile devices.26 in agreement with lupton,2 we also observed the increasing dataveillance integral to mothering with young children and the shift from dr. google and webmd and toward social media and interactive apps. in our book, we investigated the ways motherhood and mothering begin earlier and earlier, now including pre-conception. with that, expectations for behavior and approaches to conception require engagement in cultural scripts surrounding mothering.12 not surprisingly, the research underscores the pervasive influence of social media platforms such as facebook, ig, twitter and others on day-to-day interactions, including seeking medical expertise.26,27,33-35 surprisingly, ig also provides a space for sharing or resisting medical expertise. during infertility treatments, individuals hoping to conceive or partner with a surrogate engage ig as a space to interrogate medical protocols, seek lay expertise on medical decisions, exchange medicines and engage in a semiotic community, bounded by unique acronyms, language constructions and hashtagging patterns. the interactions popular on ig (e.g., hashtagging, tagging accounts, etc.) are affordancesor aspects of usage and design that assist users in finding popular posts and content with which to engage. experts and those who seek medical expertise and health information continue to assess the utility of hashtags, a word or short phrase (without spaces) beginning with a #, which creates a digital tag associated with a user’s post; this is a type of affordance. hashtags can be used across social media platforms, including facebook and twitter. on ig, servers use hashtag metadata to group similar posts, make posts searchable, and track popular themes. for users, hashtags encourage the creation of niche groups within ig, referred to as a hashtag public.36,37 for example, in this study, hashtag use on ig guided members of the #ttc (trying to conceive) community to medical expertise on ivf. hashtag publics assign a connotative, relational context to certain words, phrases or acronyms that represent meanings shared among members, which are then signified by the hashtag.37,38 hashtag publics may also use hashtags in a way that differs from the denotative meaning of the term or phrase such as #fail representing a social mishap or embarrassing moment rather than unsatisfactory performance.39,40 the social impact of hashtags is significant, as they now appear in everyday language, when a person might say aloud, “hashtag tired!” hashtag publics can also act as counterpublics for users who resist normative ideologies and narratives (e.g., trans individuals using hashtags such as #trans and #transgender with uses in the millions).30,37,38 irrespective of the narrative, hashtags are integrated within the text posted with images, so through these embedded hashtags, members are connected to the information they are seeking. currently, scholars are studying the use of hashtags to understand better how hashtag users find or distribute health information and medical expertise.41-44 originally purposed as topical markers, the first hashtag appeared in an august 2007 tweet by twitter cofounder chris messina.45 hashtags are now used to represent a range of meanings in various social media messages, those these meanings vary and remain contested. scholars analyzing semiotics on social media platforms refer to hashtagged text as hypertextual and view affordances either as intertextual elements emergent from or built within platform designs. in online domains, intertextuality could be seen as the connection between texts and other pages of the same website through hypertextuality (e.g., hyperlinks, icons, or buttons), where this hypertextuality is site-internal.38-40 hashtag publicscoalesce around the use of these hyptertexual tags, which further bound, define and redefine these groups as they create meaning together.33,35-37 with consideration to barthes’ traditional explanation of semiotics – where the signified and signifier develop signs – hashtags act as a signifier where the signified is the underlying meaning of the word or phrase.46 a hashtag is a semiotic act, and as such, illustrates that hashtags hold socially constructed meanings.38,47,48 a hashtag acts as a marker, guide and record on social media platforms, signifying a distinct, constructed meaning that is understood and used by a hashtag public, bounding that public and signaling community and social similarity to potential members.42-44,47 for example, the hashtag #ttc could represent several different acronyms. however, when it is paired with #infertility, it is understood to mean trying to conceive; in that usage, those trying to conceive through infertility treatments will find accounts to follow by searching or engaging with the hypertext of that usage. to guide our study, we explored how medical expertise was communicated, negotiated and exchanged within the infertility/#ttc community. we considered the importance and increasing use of social media platforms to seek medical expertise and how these exchanges (both intertextual and hypertextual) function within the particular hashtag public of the infertility/#ttc community. materials and methods in our study of instagram, we utilized kress and van leeuwen’s49 multimodal discourse analysis framework50 because it allowed us to explore the complex interrelations of social media discourse. with the rise of social media platforms as sources of news and information, including health and medical information, a multimodal discourse analysis allowed the authors to examine the text, image as intertext, and hypertext (e.g., hashtags), both separately and together.37,47 as berger51 discussed well before the advent of the internet, images are as important as texts since they also contain multiple meanings, communicate with and impact the viewer in varying ways. mitchell52 urged scholars to recognize the ways im[page 4] [qualitative research in medicine & healthcare 2019; 3:7875] article no nco mm er cia l u se on ly ages can be understood as a kind of language. later, he referred to imagetexts;53 jensen54 explained imagetexts in her work on blogs, noting that “visual images are often read using text, associative images are generally accompanied by text, and more often than not, text and images are presented together (p. 4). as jensen54 argued, websites provide the rich material with which to examine hypertextual arguments (p. 4) given that images and text appear together in new and revolutionary ways. when performing a multimodal discourse analysis on an image-forward social media platform like ig, the notion of imagetexts is useful. and while imagetext allows for the investigation of both text and image, multimodal discourse analysis goes further, by engaging intertextual and hypertextual relationships as well, including text that is live or linked to other locations or accounts on social media platforms. as miller47 argued, multimodality closely parallels hypertextuality and intertextuality which were both integral to our analysis. we were interested in how texts develop throughout the analysis period (e.g., two weeks) and, as comments collect under images, references to other texts and digital hyperlinks emerged. as such, we monitored ig’s affordances in the design and performance functions (e.g., hashtags, comments, images, links in bio, formatting of text, and filters).55 data collection after institutional review board approval, the authors and another research assistant, rachel ayers, collected 199 ig posts between october 10th and 24th of 2016. the study’s sample consisted of ig users and followers who posted comments/info and visual media content on their own or others’ ig feeds related to a diagnosis of infertility and/or fertility treatment (johnson received numerous infertility treatments over a period of four years; however, she did not utilize ig during this period). the search term infertilitywas entered into ig’s hashtag search engine to identify posts related to infertility, which revealed the most popular infertility-related hashtags and formed our sample of public posts to be analyzed. we gathered individual posts through hashtag use. the research team selected hashtags with the largest number of uses that referenced rei treatment. in our first exploratory views, it became evident that a majority of the posts focused on ivf treatment cycles. as such, we narrowed the treatment focus to ivf given that it requires a serious commitment of time and monetary resources – the procedure happens throughout several months and even if there is insurance coverage, costs many thousands of dollars.8,15 furthermore, patients perform much of the treatment on their own, out of the office (e.g., injections).8,15 the first two hashtags we chose to appear as a setbecause they are often paired in posts. we selected: i) #ivfsisters/ #ivfcommunity; ii) #ivffail/#infertilitysucks; ii) #ivfjourney. the research team also selected what we termed outlier hashtags, meaning hashtags that frequently accompanied ivf posts, but do not always address the ivf cycle (e.g., shots of a patient on vacation). these were: i) #ttc; ii) #ttcsisters; iii) #infertility. selected posts used at least 1 of the total 7 hashtags, and a majority used 2 or more. we collected 199 images and analyzed the first 25 comments (or all if there were fewer) for types of discourse (e.g., discourse around medical expertise) and themes emerging from that overarching discourse. any ig user who used our searched hashtags may have appeared in this study’s sample. the specific demographics of these individuals remains unknown, given that users can reveal as little or much about themselves as they choose (e.g., age, real name, geographic location). however, individuals sometimes included specific personal information in their feeds, such as demographic location, medical status, insurance information, and doctors’ names, rei practice names, and their bioinformatics.56 we were vigilant about privacy concerns, and thus this sampling procedure allowed us to collect the most popular public posts.47,57-61 we did not interact directly with participants; to further protect our participants, identifying information was blurred within images. once the team collected images, screenshots were taken with a smartphone and then uploaded to a secure site. once uploaded, those images were arranged in linear rows, with the singular image and caption, then the first 25 comments (not all posts had 25 comments). depending on the number of comments, some rows included seven images and others had as few as three. to label the images, we called each spreadsheet insta with a letter for each sheet, which resulted in insta a through insta j, with each row numbered and images were identified by sheet and row. for example, b-7. our files were stored on johnson and quinlan’s password protected computers. due to the high quality of the images and the number of images (posts and comments) the files were too large to email and had to be stored in a locked folder on our secure dropbox. once we collected enough images to populate ten spreadsheets, with comments for each image, we reached saturation. for instance, comments and posts began to repeat and no new information was gathered. throughout, we reviewed the data collection process to ensure we could approximate the ig experience of scrollingwithin a spreadsheet. as with other social media platforms, ig images and resulting discourse are best viewed in situ.47 however, images and accounts can be deleted at any time, and the hypertextual hashtag feed changes every few seconds; to get a snapshot of the discourse during the two weeks of our study, we captured the images and place them in a more permanent location (e.g., a spreadsheet) for analysis. data analysis as qualitative researchers, we proceeded both induc [qualitative research in medicine & healthcare 2019; 3:7875] [page 5] article no nco mm er cia l u se on ly tively and deductively. we immersed ourselves in the data and analyzed and re-analyzed our dataset inductively, searching for commonalities and repetitions in the language, images, and intertextual and hypertextual discourse.47 the team met on three occasions to create a system for notes and observations, to discuss themes emerging the images, text and hypertext and to compare personal research notes and observations for reliability regarding emerging themes. the team used a series of spreadsheets from which to make notes on observations. to the far left of each spreadsheet, we used a column which listed the main and outlier hashtags for each post, as well as the number of user followers and notes. these notations and observations assisted us in distilling our themes and providing examples for each. after the team agreed on initial themes we selected representative images and blurred them to obscure personal information and potential identifiers. we also proceeded deductively, by recording frequencies by which patterns occurred, and situating those patterns within an interpretive context for discussing our overarching themes. the major themes were classified through prioritizing, synthesizing, and abstracting.62 in the last reading, the researchers analyzed the intersemiotic relationships conveyed by hashtag publics such as the interaction of visual, textual and hypertextual elements, including both explicit content and implicit connotations.63 to explore intertextuality and hypertextuality in our data set, we made notes on the affordances we observed (e.g., intertextual elements such as likes and emoji in response to images and/or comments) and hypertextual elements such as hashtags and tagging practices and how these elements impacted discourse around medical expertise.47 after analyzing images, hashtags and other hypertext through up to 25 comments, the research team coded the discourse for medical expertise such as information on reactions to (in)fertility treatment and evidence of pregnancy/pregnancy symptoms. we found that the overarching discourse centered around patient perceptions of (and most often resistance to) medical expertise. our final three themes included: treatment protocol choices, treatment side effects, and pregnancy diagnosis/confirmation. in the findings, intertextual and hypertextual data were included to provide evidence for the researchers’ interpretations of semiotic signaling.47,64 results and discussion as a result of the availability of social media, many ig users ask for and provide medical expertise before, during and after ivf treatment and in response to posted images and accompanying text. at times, we perceived the personal struggle of individuals seeking medical expertise, projected into the public space of the social media world, and these posts were far more evocative, even discomforting. for example, the image an account holder posted of her cervical mucus, wondering if its viscosity hinted at pregnancy. users offered followers hypertext with hashtags, #ivfsuccess, #ivfmeds, #ivfsucks while also tagging other account holders to come back to the discourse for further engagement, or as a marker of information they may need later (e.g., after the tagged account holder started her own ivf cycle). importantly, each of these inclusions represents particular choices of self-disclosure, and engagement with the discourse around the power of medical expertise during the ivf process. these divulgences and the paring of intertextual and hypertextual affordances (e.g., hashtags, tagging, acronym use) comprise a multimodal form of communication, which can deepen bonds between users and obscure information for outsiders not practiced in the language of ivf treatments in the #ttc community. treatment protocol choices during infertility treatment, particularly ivf, different practices create and rely on particular treatment protocols, including pre-treatment tests.65 for example, some protocols privilege certain drugs (e.g., gonal-f®, menopur®), some prefer freezing embryos prior to transfer, though age limits vary (e.g., some require an egg donor for cis female patients over 40), some practices prefer progesterone injections (via an injection) to creams or suppositories. practices rely on their protocols to produce superior results (i.e., confirmed pregnancies), which they can advertise publicly to attract clientele and as a result, can be resistant to patient requests to adjust or alter the preferred protocol.11,65 against this backdrop, #ttc and ivf patients use social media platforms to ask about the protocols of others in their hashtag public, and what to discuss with their doctors, “any suggestions for questions to ask or tests to try?” and below a post about a failed cycle a commenter offered, “…maybe you could also do a repeat pregnancy loss panel?” another commenter disclosed a miscarriage they experienced and the poster provided medical expertise in response, including urging specific testing and asking about hormone levels: “i am sorry to hear about your miscarriage [broken heart] did you pgs test your embryos… don’t go into your 3rd cycle without knowing of you have endometriosis…have you been tested for nk cells? apa panel? immune issues in general? what is your tsh now?” these types of comments suggested medical expertise but also bound the community through language, acronyms and procedural references that would be confusing or opaque to outsiders, even medical practitioners outside the field of reproductive endocrinology. the implicit message is if you know, you know. but posts also addressed when and how to resist doctor-mandated treatment choices. for example, one account seeks to answer protocol-based and other medical questions and in one post, focused on an endometrial receptivity array test or era. commenters questioned whether they [page 6] [qualitative research in medicine & healthcare 2019; 3:7875] article no nco mm er cia l u se on ly would be goodcandidates for the test. however, other commenters entered the discourse to remind ig users what this test was reallyabout: “don’t forget to add that it’s basically a mock cycle so you are pumping your body with all the synthetic hormones you are just not getting the benefit of retrieving your eggs.” in these instances, individuals with unknown training and expertise sought to draw the conversation back to what could be a hurdle for many women undergoing the test: all the treatment, and no egg retrieval. the implicit connotation is if you are going through a cycle you’ll want something to show for it. items in images included medical instruments, medicines, supplies, and even bruised and swollen abdomens and marked injection points. multiple images were paired with extensive commentary using the terminology of technical, medical expertise. one post included a woman pictured in her kitchen, hand on hip, head angled up at the camera with a slight smile – here, the user signaled to the viewer that she is competent, ready to perform her injection at home and armed, literally and figuratively, with the capacity and information to complete this treatment. she also complicated stereotypical ideations around infertile bodies; the user appears to be white and cis female, but she also young (early 20s?), with a full arm of tattoos and a lip ring, she signals to the viewer that she understands this tension with the hashtag #thisiswhatinfertilitylookslike. while the image might inspire confidence and is suggestive of selfsufficiency, the text confirmed this inference, while utilizing the language of medical expertise: a lot of people have asked me what that nasal spray is for and i’m not sure my explanation was very clear. here’s a better one: nafarelin is a gonadotropin-releasing hormone agonist (gnrh agonist). its proposed mechanism of action is the desensitization of pituitary gnrh receptors leading to a decrease in gonadotropin release... instagrammers may encounter this image, the accompanying text, and the hypertext hashtagged beneath the picture (e.g., #infertilitysucks, #ttcjourney) by searching any of these hashtags and/or through other accounts following this user. while informative, the image was also empowering, illustrating the courage and confidence one can achieve in an otherwise isolating and difficult process. some of the posts operated similarly to a yelp review for fertility practices. one image has a purple background with a text bubble: “has anyone been to seattle ivf?” the text underneath the image read: “…i would love to hear your experiences if you’ve been there!” one commenter offered, “my cousin did and had a great experience.” a former employee from a local, competing rei practice discussed their former employer and then stated, “i hope it works out with seattle ivf! they seem like a great company who cares about the patients more than just the $$$ [heart emoji]!” alongside this recommendation to visit seattle ivf the poster attempted to soften the comment with symbolism – the commenter never said money, but the dollar sign had explicit connotations. the heart emoji seems to offer good luck and well wishes, but it is paired with a direct critique of the way some rei employees saw their practices and their bosses. the commentary was a warning to newcomers too; at some practices, it was not altruism, it was business. also connected to protocols was the practice of posting pictures of medication that the ig user intends to gift, or has received from another member in the community; these posts are also hyptertextual (e.g., #ivfmeds, #menopur). regarding the use of these medications, practitioner opinions vary: some refused to participate in the practice, others understand the difficulties in paying for medicine, particularly without insurance and allow their patients leeway; others take unused medication from their patients and keep it for other patients. as user 2 reported: “i am so happy i had a doctor who bucked the rules and took all my unused meds for patients without ivf coverage” (figure 2). some posters offered to ship medicine: “[lists medicines] these need to be used in the next three weeks – so if you need them, i’d love to help you out & donate them to you!! dm me so we can figure out shipment!” in the comments, some wondered about the legality of shipping medications through the mail: “question is it legal to ship medication…i think the post office throws them out if it isn’t from a pharmacy.” the sale of medication between individuals through the mail is illegal. the sale and exchange of medications is also risky – drugs can be tampered with and sent or stored in improper temperatures. however, that is not what is happening here. individuals are donating medications to one another, which is an important distinction. still, shipping medications through the mail can lead to a charge of mail fraud.66,67 despite the risks, the most common response to these posts are others providing offers of left-over drugs or further requests for medication: “i have some that expire next month, interested?” “i have so many left over!! not sure what to do with them.” there was an even a partner advocating for medications: “hi, my wife and i are starting our ivf journey and none of our meds are covered. does anyone have any they are willing to donate?” we cannot ascertain the actual incidence of medicine exchange, but the number of posts showing gifted drugs suggested that ig posts can facilitate the practice. regarding sharing/shipping medicines, many posters showed what they received, discussed the market value of fertility drugs, and celebrated their ability to return to treatment. the economic pressure of fertility, inc., the biomedical system driving reproductive endocrinology today is well studied; what we discovered is that social media presents a place to explicitly and implicitly work around some of these economic constraints to maintain rei protocols, regardless of cost.16,68 while the text focused on gratefulness for the medications or desires to share it with someone else, the images and hashtags do specific work here. using hashtags such as #ivfmeds, #menopur could potentially help users track [qualitative research in medicine & healthcare 2019; 3:7875] [page 7] article no nco mm er cia l u se on ly medication donors through ig’s search engine. the images are intertextual too – they illustrated medications with valid names and packaging and are shown in decent lighting and offer users close-ups to prove they are intact, unadulterated and safe, whether or not they are. but when medicine is proferred, it is always pictured. another reason for including a picture is that the same drug can be packaged in pens or vials and with varying doses, so a patient has to see the particular doses offered again to understand if or how it overlaps is there parallel with a patient particular protocol. treatment side effects infertility drugs can cause many side effects including weight gain and hot flashes, bloating and achiness. during ivf treatment patients take a host of these drugs simultaneously to facilitate ova growth and prepare for egg retrieval. patients often turned to their hashtag public for expertise on side effects related to the medicine specifically (e.g., how to prepare and draw up meds for injection) and then to discuss their reactions to these drugs. throughout this theme, the research team noted that within the comments section, users relied on symbolic imagetext like emoji and hypertext like hashtags and account tagging, helping other users come back to the post and add to the discourse or use the information during their own treatment cycles. altogether, these elements create an imagetext tapestry, which included numerous perspectives, sources of information and forms of knowledge, within and because of intertextual and hypertexual discourse. one user posted a picture of their medicine in the background with a sizable needle in the foreground and asked, “anybody else had blood spray out after this injection?” while the poster did not provide context, the treatment issue was implicit and commenters responded without requests for further clarification: “i hope the next one is easy peasy!” others added their own experience and suggested varying angles or positions to lower the chance of drawing blood. there is explicit solidarity here through the expertise proposed, but also emotional support through encouragement and understanding from others that used the drug, knew what it was for and already used it safely. another user posted a picture of the drug [merional®] ampoule: “so…any tips on snapping the glass so it doesn’t go everywhere?” commenters recommended a range of [page 8] [qualitative research in medicine & healthcare 2019; 3:7875] article figure 2. medicine distribution, menopur®. no nco mm er cia l u se on ly methods and identified themselves as both patients and technical experts. one directed: “as a nurse we fold gauze (or a napkin if you don’t have gauze) and pinch the glass with the gauze over it and snap it at the line. this allowed any broken pieces to end up in the gauze and not everywhere else. hope that made sense (blushing smiley face emoji).” the nurse cancellare gave detailed expertise but then ends with an emotive tone, symbolizing friendliness and perhaps even humility – almost an apology for her expertise – with the emoji. one ig poster bemoaned the “revenge of teenage acne/ivf problem spots” and shared her journey from great skin to acne as a result of ivf treatment. in the image, she displayed before and after pictures, but showing regression, with what appeared to be flawless skin to skin with obvious blemishes. the user linked 20 hashtags in her post, among them: ivfsupport, ivfmeds, ttc, ivfwithicsi and shareyourstory. the poster uses the term ivf skin in all capital letters twice in the caption, suggesting that this may be a common experience with others who have received treatment. the number of hashtags used at the bottom also implies the user is trying to draw people to her post, potentially to engage in dialogue, invite the stories of others, commiserate or find expertise on battling hormonal acne. the other hypertext in this is the user’s location, which is marked as her rei practice, so it is also possible ivf skin is a term she discussed with her medical team, though she does not intimate there is a cure. there are four follower comments, but all remarked on the strength of ivf patients. while the poster did not explicitly ask for support, the use of a series of selfies illustrating a treatment side effect such as acne, which can foster pubescent angst, embarrassment, anxiety and shame, represented an intertexual attempt to situate personal experience and boost confidence while seeking affirmation. pregnant diagnosis/confirmation in our previous qualitative research on infertility treatment support participants disclosed practices rei practitioners advised them on what to avoid.15,16 these include but are not limited to: sharing medications and taking pregnancy tests before the beta test (e.g., a blood test at an office). rei practitioners we interviewed realize patients often take pregnancy tests anyway, but they continue to discourage the practice, which can cause anxiety and emotional upset from false negatives or excitement and then devastation from false positives. there are posts discussing when to start home pregnancy tests after embryo implantation, all communicating that patients know better but then providing detailed images of test results, asking for feedback on symptoms, and querying other ig users for positive stories and experiences. all of the discourse around pregnancy testing reflects resistance to medical expertise on testing early. while testing is emotionally wrought, it reflects the individual desire to reinstate some control over the process, to know what is happening in the body after treatment and before the beta. some pregnancy-related posts showed pictures of pregnancy tests with results or discussed if positive lines were growing darker and more apparent, while others discussed testing out or monitoring the drop of synthetic hcg from the trigger shot (e.g., ovidrel®), which prompts ovulation before egg retrieval. once that level disappears, some continue testing to see if their body produces its own hcg and thus a positive pregnancy test, indicating the ivf cycle was successful. however, using pregnancy tests from the drugstore, with dye-based lines instead of digital readings can produce confusing results, so some turn to ig for feedback. there is also an economic constraint here – low-cost pregnancy tests are accessible (e.g., at the dollar tree, where tests are $1 if you buy 4 or more) and attractive for patients struggling to cover treatment costs, but these tests are notoriously unreliable. this tension is well understood in the #ttc community, especially among those on self-pay for meds and treatment, so, ig users present visual and textual supports when posts seek clarification on test results. user 3 posted an image of three pregnancy tests, each from successive days with a positive line becoming slightly more noticeable across the three days. in the picture the tests are labeled as 5dp5dt, 6dp6dt, 7dp7dt, meaning 5, 6, or 7 days post-five-day transfer, etc. the text says, “last ivf cycle, i didn’t get a line until day 7 (and it was a squinter to say the least)…however, each day the line continues to get darker and my confidence grows…[little plant emoji; #ivfsuccess].” commenters were encouraging: “looking good!!” and “you’ve got a sticky one in there! keep testing for as long as it makes you feel good” post viewers understood both the explicit and implicit question the image posed, and responded by confirming the tests became more positive over time. there is no contextual information about the picture, including the lighting for the image, the filter used or other information addressing the impact of setting on the appearance of the result lines. some users asked the question directly through their posts: “i know everyone is different…i just wanted to hear from you guys when your trigger was gone if you tested it out? how many days after the shot were your tests negative?” the user goes on to discuss the progression in the comments and is second-guessing her results. user 3 concluded: “if it’s still there i’ll ask when we have our wtf appointment next friday” (figure 3). perhaps the most visually provocative image we encountered showed the user’s cervical mucus. the poster realized their post was unusual, though the hashtagging within the post made the image discoverable to hundreds of thousands of ig users. the caption read: “this is very tmi, ladies!!! can you tell me what kind of cm [cervical mucus] this is? i’m having a hard time understanding this cm. [anxious face with sweat]…sticky? school glue? btw, my breasts are still sore. [face with medical mask emoji] p.s. i’m so sorry if this picture is disturbing you. i [qualitative research in medicine & healthcare 2019; 3:7875] [page 9] article no nco mm er cia l u se on ly might be deleting this pic after i know the answer.” the commenters did not seem deterred by this and instead responded very positively: “i’d call it somewhere between sticky and creamy” and “not to get your hopes up or anything but my body produced stuff like that when i was pregnant,” or “creamy/school glue i think!” this image is certainly explicit in its signaling – this is clearly a body fluid. yet the apologetic tone and use of tmi (which means too much information and flags information some users might find too personal) with the image are intertextual, asking for forgiveness with a parallel demand for confirmation. the responses were effusive and mimic the intimacy of the image by pairing adjectives common in pregnancy manuals and doctor’s pamphlets with encouraging words, positive emoji and assurances based on an image in an unknown setting. again affordances matter here – we wondered where the picture was taken (context), in what lighting, at what time of day, and posted with what ig filter? all of these contextual elements could change the appearance of the opacity and viscosity of the material on the poster’s fingers and as a result, the actual answer to her question. research implications based on our findings, patients before, during and after ivf treatments are using ig to give and exchange medical expertise, but also to build community and support one another (e.g., sharing words of encouragement, donating surplus drugs to each other). the intertextual and hypertextual nature of these posts (i.e., the use of imagetext to communicate) makes them accessible to potentially millions of ig users and creates a time-specific record of a dialogue between members of this hashtag public. given the public nature of this discourse and the personal information and data that is often shared, there are legal issues to consider. legally, problems may arise from medicine exchanges, particularly if sending donated drugs is considered mail fraud. is there liability in situations where ig users make personal health decisions based on ig discourse, and if so, who would be responsible? ethical guidelines and legal frameworks are far behind the potentialities of social media interactions, and so much of what we observed reflects this gap. on the other hand, the lack of oversight and regulation create meaningful spaces where individuals can build community and impact each other in tangible ways, which is vital given the isolation commonly experienced by fertility patients.11,13,14,17 considerations of legality also intersect with privacy issues. in our data set, posters included images that revealed their full names, birthdates and social security numbers, as well as screenshots of private emails received from their rei practices, with the first and last names of their practitioners publicized. interestingly, many of these were posted through accounts in which the individual’s ivf-specific account is obscured or hidden so strangers were potentially more likely to view this information than close friends or family. in the email instance, the nurse in question was clarifying a treatment error and commenters revealed the particular medical system and location of the practice. we are unaware if anyone from the practice was aware of this post, and the nurse may or may not have had anything to do with the clinical error in the message. [page 10] [qualitative research in medicine & healthcare 2019; 3:7875] article figure 3. blur of pregnancy tests, 5dp5dt. no nco mm er cia l u se on ly furthermore, it is unclear if ig users understand the searchability of their images based on their use of hashtags; do users realize that anyone that uses the same hashtag or searches that hashtag can view their information and potentially use it in ways the poster did not envision or would not approve (e.g., identity theft)? one protection available to users is to set their account to private but in the #ttc community, accounts are often public so users can follow the hypertextual trail to find and support each other.69 and if you have a private profile but leave a comment on a public account, your profile is visible and other users can click on your username.69 because ig delineates the privacy policy in their user agreement,69 it is unclear whether or how instagram supports users who claim invasion of privacy or identity theft; hypertext is an affordance, so it leaves a trail by design. lastly, for some ig users, ig represents a safe space to share their fertility journey because they are not discussing it openly with friends and family. the popularity of hypertext in these posts complicates the idea that simply obscuring one’s identity with a username provides the sort of anonymity expected or desired. for rei practices, it may be valuable for doctors and nurses to understand where patients are seeking and receiving information to better prepare patients to ascertain what is accurate advice. as we have seen from our previous research, telling patients don’t google is not effective,15 and during ivf cycles, treatments (such as injections) happen in the home and generally not during business hours. patients understandably have questions or concerns but due to long wait times and/or lack of availability, talking to a practitioner immediately might not be possible. given how quickly some posters turned to ig to gather information or share their frustration with medical experts (4 minutes in the case discussed), it is likely some users will find expertise and support on ig prior to making contact with a practitioner. on social media platforms, the contingent nature of information is visible – the way expertise is framed, consumed, and resemiotized through interand hypertexual discourse continues to confound the expertise binary of lay or technical.12 in this setting, users validate expertise through the nature of the discourse, by what is posted and what is liked rather than by clear standards and structures external to this discourse. for example, when patients receive support for activities against the recommendation of medical personnel (e.g., pregnancy testing during the two-week wait, or the time between embryo implantation and the beta test). regarding medicine exchanges, is it possible that medicine received from another ig user is no longer viable, was accidentally contaminated or damaged during shipping? as these medicines are posted, they become parts of hypertextual discourse, but they also lead to offline communication and interaction, including mailing packages and thank you notes. furthermore, these posts can be removed at any time, making the success of medicine exchanges challenging to gauge and track. practitioners might consider that patients’ resistance to or questions about protocols can result from expertise gleaned on ig (e.g., information on multiple embryo transfers). all of these practicalities highlight the power and complexity of imagetext on social media platforms, showing the richness of these spaces for semiotic discourse, as well as the complications introduced by hypertextuality. conclusions given the availability of social media-based data, there are countless entry points for other scholars to analyze multidmodal discourse on social media platforms. in terms of health issues, other studies could examine hormonal therapy, surgery, intrauterine insemination and other procedures or treatments distinct from the conversations we studied. future research could query the impact of alternative rei treatments (e.g., meditation, yoga, dietary changes). a multimodal analysis that seeks out the perspectives of women of color, queer women, trans women, women with lower socioeconomic status and other individuals in treatment would provide more information about the impact of ig’s affordances such as hashtag use, tagging, emoticon/emoji use and help interrogate the analytics of silencing alternative voices and perspectives. this silencing is a practice rachel cargyle (@rachel.cargyle) and others refer to as being shadow banned, wherein ig blocks an individual’s hashtag from appearing in searches without their knowledge (most users find out from their followers). reviewing a range of these discourses can also provide information on the varying experiences of communities at potential crisis points in the life-cycle of early motherhood.12 another call for future research is to broaden the system of data collection. there is no efficient tool to perform textual and visual analysis of ig imagetext, unless posts are individually collected, compiled and coded. netlytics and other programs focus on likes and other metrics, but do not have tools available for rhetorical analysis. radian6, which collects social media data, gathers text from ig, twitter, blogs and facebook but does not collect images. to analyze the imagetext in context we had to pair screenshots with comments in a linear progression, a tedious effort that worked but could be cumbersome to analyze. despite the challenges of data collection, ig is a social media platform with rich and wide-ranging research opportunities. future scholars might also conduct multi-discourse analysis on other stigmatized diseases (e.g., stis, diabetes). what types of health information and medical expertise are sought and exchanged in these communities on ig? future studies could analyze discourses available through facebook or ig live or stories functions and analyze users’ direct messaging to poster content. finally, researchers could closely examine emoji use within the #ttc community, [qualitative research in medicine & healthcare 2019; 3:7875] [page 11] article no nco mm er cia l u se on ly and in other hashtag publics. emoji are a semiotic, intertextual form unique to the social media age, and their role offers complex, fascinating material for study. today, we engage in a mediated world, where most discourses allow for multifaceted analysis (e.g. of intertext, hypertext, etc.). social media is just one level of our mediated realities. on instagram, users in the #ttc community act as informal patient advocates for themselves and others experiencing ivf treatments, while creating a multimodal, digital extension of the formal, textual medical record. for users, the unique nature of the ig platform, the power of hyptertext and the utility of images, offers a unique refuge from the biomedical gaze. as one user commented: “i’ve learned one thing, gotta advocate for yourself and pay attention to every detail.” the lack of acknowledgment by individual health practitioners, practices or systems regarding the impact of multimodal discourses on social media platforms actively denies the lived reality of many patients. this denial refuses to grasp the dynamic nature of multimodal communication in which expertise is negotiated, recontextualized, and even disseminated in new forms (e.g., through hyptertext such as #ivfmeds).12,70 with cautious optimism we urge healthcare practitioners and administrators to consider these dynamic, intertextual and interconnected discourses to keep practitioner-patient dialogue open and evolving in tandem with social media platforms available today and in the future. references 1. bigelow hr. the moral significance of sterility. obstetric gazette 1883;16:1-24. 2. gregg rs. sterility versus fecundity, and the divorce evil. milwaukee med j 1905;13:60-2. 3. meaker s. human sterility: causation, diagnosis, and treatment. a practical manual of clinical procedure. baltimore: williams and wilkin; 1934. 4. centers for disease control and prevention. infertility faqs. available from: https://www.cdc.gov/reproductivehealth/infertility/index.htm. accessed: september 2018. 5. eunice kennedy shriver national institute of child health and human development of the national institutes of health. infertility and fertility. available from: https://www.nichd.nih.gov/health/topics/infertility. accessed: september 2018. 6. world health organization (who). infertility is a global public health issue. available from: http://www.who.int/reproductivehealth/topics/infertility/perspective/en/ accessed: september 2018. 7. sandelowski m. with child in mind: studies of the personal encounter with infertility. philadelphia: university of pennsylvania press; 1993. 8. marsh m, ronner w. the empty cradle: infertility in america from colonial times to the present. baltimore: johns hopkins university press; 1996. 9. mayo clinic. in vitro fertilization (ivf). 2019. available from: https://www.mayoclinic.org/tests-procedures/in-vitrofertilization/about/pac-20384716. 10. bell av. beyond (financial) accessibility: inequalities within the medicalization of infertility. sociol health illn 2010;32: 631-46. 11. johnson b. personal, interpersonal, biomedical, textual: vignettes on infertility and fertility privilege. depart crit qual res 2016;5:76-100. 12. johnson b, margaret m. you’re doing it wrong! mothering, media and medical expertise. rutgers: rutgers university press; 2019. 13. bute jj. “nobody thinks twice about asking”: women with a fertility problem and requests for information. health commun 2009;24:752-63. 14. bute jj, vik ta. privacy management as unfinished business: shifting boundaries in the context of infertility. commun stud 2010;61:1-20. 15. johnson b, quinlan m, marsh js. telenursing and nursepatient communication within fertility, inc. j holist nurs 2018;36:38-53. 16. johnson b, quinlan m, myers j. commerce, industry, and security: biomedicalization theory and the use of metaphor to describe practitioner-patient communication within fertility, inc. womens reprod health 2017;4:89-105. 17. willer ek. health-care provider compassionate love and women’s infertility stressors. commun monographs 2014;81:407-38. 18. breitkopf e, rubin l. 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[qualitative research in medicine & healthcare 2019; 3:7875] [page 13] article no nco mm er cia l u se on ly 68. mamo l. fertility, inc.: consumption and subjectification of lesbian reproductive practices. in: clarke ae, mamo l, focscket jr, et al., eds. biomedicalization: technoscience, health and illness in the us. durham, nc: duke university press; 2010. pp 173-196. 69. instagram. controlling your visibility. available from: https://help.instagram.com/116024195217477/?helpref=hc_ fnav&bc[0]=instagram%20help&bc[1]=privacy%20and% 20safety%20center accessed: september 2018. 70. quinlan m, johnson b. #motherhoodishard: narrating our research and mothering in the postpartum stage through texting and social media. health commun 2019; available from: https://www.tandfonline.com/doi/full/10.1080/10410236.201 9.1587694 [page 14] [qualitative research in medicine & healthcare 2019; 3:7875] article no nco mm er cia l u se on ly layout 1 introduction imagine an admonition that went against all commonly accepted wisdom: physician, don’t heal thyself… and whatever you do, don’t be seen seeking healing. one that even added: in fact, be very cautious about even acknowledging that you yourself need healing. it would be understandable if you winced, greeting such a caveat as so incredible as to only be imaginable in some medical version of george orwell’s 1984. alas, as we’ve witnessed over recent years, orwell’s dystopian fantasy was quite prescient. physicians get ill and have substance abuse problems? brace yourself this may come as a shock. physicians are human beings, and while often exceptional and resilient, they are not immune from succumbing to emotional illness, substance abuse or professional burnout. (for this paper, the term ‘physician’ throughout refers to licensed medical doctors, md or do or international equivalent, including physicians in postgraduate training, i.e. interns and residents, and to medical students. there is abundant literature documenting the yearly incidence of significant depressive symptoms in nearly a third of trainees and roughly the same for med students. so too the significant incidence of other emotional illnesses. and, in a study of alcohol abuse, in this case amongst surgeons, the incidence of such approximately 20%. as this is not an epidemiologically oriented treatise, for our purposes, let’s posit that approximately a quarter to a third of the practicing physicians in the us currently grapple with emotional illness or substance misuse; and when considered cumulatively, the prevalence of these escalates markedly. whether these illnesses rise to the level of impairment that significantly affects one’s performance at work is a crucial question. in fact, it may be one of the central questions underpinning legal arguments which challenge the alleged right of intervention of regulatory entities into one’s personal life. that question must be relegated to legal scholars and will not be addressed here. this paper aims to explore a previously under-recognized major hindrance to physicians seeking mental health and substance abuse care and one that paradoxically may be causing new or worsening psychopathology. an illustrative case consider the following composite scenario: a wellliked internist, dr j., had recently taken a brief medical leave due both to chronic and severe work life stress and urgent family issues. she confidentially queried a few of her colleagues on their recommendations and independently sought psychiatric care. diagnosed with depression in the context of serious burnout, she was begun on an antidepressant and also entered into psychotherapy. after to heal or not to heal, physician, that is the question kernan manion executive director cpr, the center for physician rights abstract physicians experience mental illness, substance abuse and burnout at comparable to considerably higher rates than the general population. however, they face great risk if they acknowledge on licensing and credentialing application queries the fact of their seeking help or that they have sought such in the past. physicians also risk allegation of having such disorders, especially by any of three major regulatory powers which have authority over their professional licenses. these entities can mandate so-called psychological fitnessfor-duty evaluations (pffde) by non-neutral evaluators and then compel acceptance of their findings and immediate and full compliance with their recommendations, doing so in an environment devoid of due process and with no discernible recourse for the subject physician. this article strives to highlight this previously unrecognized peril and encourage further exploration of these concerns and undertaking of collaborative measures to ensure that physicians can obtain professional help when needed without causing career jeopardy while also honoring the valid quality of care and patient safety concerns of the prevailing regulatory entities. correspondence: kernan manion, one mifflin place at harvard square, suite 400, cambridge, 02138 ma, usa. tel.: +1.978.381.3880. e-mail: cpr@physicianrights.net key words: physician; board; php; peer review; fitness-for-duty. received for publication: 6 november 2019. accepted for publication: 27 november 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:126-135 doi:10.4081/qrmh.2019.8665 [page 126] [qualitative research in medicine & healthcare 2019; 3:8665] qualitative research in medicine & healthcare 2019; volume 3:126-135 no nco mm er cia l u se on ly two weeks of approved leave, she returned to her clinical and leadership role without event and with full resumption of her duties. that month, her state medical license application was up for its three-year renewal; it asked if she had ever had a mental illness or been on medication for such and whether she had ever had problems with substance abuse. naive, and believing she had to disclose her recent initiation of psychiatric treatment, she answered that she had. she was subsequently notified by the medical licensing board (mlb) that she would need to schedule an assessment at the state’s physician health program (php). believing this to be little more than some form of routine clearance visit, she scheduled this evaluation. upon arriving, she was informed that, simply on protocol, she had to submit to an observed urine screen for drug testing. she then sat for a 90-minute interview with the php intake social worker who conducted a highly personal mental health consultation. during this assessment, upon being questioned about her alcohol use, she acknowledged that she consumed alcoholic drinks several times weekly and also upon further inquiry affirmed that, yes, during the peak of her burnout, she did notice that her pattern of drinking increased but not to any problematic degree and certainly not to incur any legal charges or adverse impact on patient care. at the conclusion of this interview, concerns were raised by this social worker and the non-physician clinical director about her evaluation and specifically her use of alcohol. while she thought their concerns were overly cautious, she left confident that all had been explained satisfactorily. several days later, she received correspondence from the php indicating that they were recommending that she attend a four-day comprehensive fitness-for-duty evaluation out-of-state at a specific php-approved facility at an out-of-pocket cost of nearly $5000 allegedly to determine whether she had a substance abuse problem and whether she was truly safe to practice. in calling to clarify, she was informed that, as her urine drug test for alcohol was elevated, they felt her attendance at this purportedly specialized assessment program was mandatory and that if she declined to participate, it was likely that when the php informed the mlb, the mlb would officially compel her compliance with their recommendation as a condition of licensure. as she reviewed this with incredulity, her concerns were only heightened in learning of similar stories of physician colleagues who were coerced into such four day evaluations and then ordered into lengthy treatment followed by five years of intrusive and costly php monitoring. she feared asking for a copy of her php evaluation but felt that she needed it just to be able to make sense of what they were basing their findings and recommendations on. she was told that she could not obtain that as it was privileged information. should she refuse to comply, the board would not renew her license. thus, she would lose her privileges at her hospital and would be reported to the national practitioner data bank, making her virtually unemployable anywhere. but should she comply and sign a contract to become a ‘participant’ in the php program, she risked being labeled as an ‘impaired physician’ which would subject her to strict compliance with a state-enforced php-managed treatment and monitoring program. she notified the chief medical officer at the hospital where she was a longtime employed physician. while the executive leadership at her hospital held her in highest esteem, they told her that they were bound to enforce compliance with whatever the php and mlb ordered. at considerable expense, she hired a professional license defense lawyer, a former board attorney himself, who matter-of-factly opined that she should comply simply out of expedience as the board had the right to suspend her license immediately if she challenged this. and should she decide to fight it, the legal effort would be protracted, very costly and likely futile. and besides, he cautioned, it would likely anger the board. discussion while the above is a composite reconstruction of a representative case, the reality is that variations of this scenario repeat with alarming regularity. hundreds if not thousands of physicians each year may find themselves ensnared in such a kafkaesque nightmare. but, absent actual documented concerns about her current clinical performance, it is unlikely that there is any legitimate basis for a mlb or php to order or conduct such an investigation simply on the basis of such intrusive licensure application questions. numerous authors have raised concerns about the very legitimacy of certain questions mlbs and credentialing bodies ask on their applications, opining that such questions are in overt violation of the americans with disabilities act (ada). and there is significant data to support that. but there is a world of difference between having rights and exercising them, especially in an administrative regulatory system untethered from any state oversight and free from liability for abuse of its power. and clearly there is more here than simply the legality of asking such intrusive questions on a licensing or credentialing application. the chaos and turmoil sequelae of php engagements when 1 more closely examines the cascade of events that has occurred, the decisional quandaries it poses and the future implications of whatever course of action she chooses, it is no surprise that dr j. found herself incredulous and immobilized. it is fair to say that so much has happened in such a short period of time with such immense implication that [qualitative research in medicine & healthcare 2019; 3:8665] [page 127] special issue on physician mental health no nco mm er cia l u se on ly truly the mind can’t unpack it. i have come to understand it as intrapsychic chaos and turmoil. the chaos is from too many events, issues and situations of awesome importance occurring virtually simultaneously, each demanding a reasoned internal dialog but because of its urgency, that dialog rising to the level of panicked cacophony. the accompanying emotions anxiety and fear, hurt and powerlessness, anger, shame … all flood forth as well. so much intrapsychic congestion occurs that it is literally impossible to tease apart expediently. it overwhelms the ram capacity of the mind. and like illness, the longer the chaos and turmoil continues, the more relentless the erosion of resilience and wellbeing. the sequelae in slow motion as one dissects this not atypical scenario, note the host of issues occurring concurrently. she had no idea the farreaching implications of submitting to such an evaluation. all she knew was that she had long-simmering but adequately managed burnout which acutely intensified; that she developed serious depression, and that she was relieved that she was wise enough to get help and was on the mend. she was pleased to be back in the groove and her colleagues were thrilled to have her back. she was initially more irritated than worried about the board’s insistence on submitting to the php assessment before renewing her license. she really thought it was just a pro forma thing that boards do; after all, she had never answered such a mental illness question in the affirmative before. she thought it was a bit intrusive but reasoned, after all, it must be legitimate for them to ask these questions, otherwise they would not. her medical society of which she was now president-elect had never raised any issues about it. she was taken aback by the unannounced observed urine drug testing, thinking nothing of her routine social use of alcohol. but she was bothered that in questioning why this test was necessary, she was matter-of-factly told it was part of their protocol. neither she nor her psychiatrist had had any concerns about her social drinking, including while she was on an antidepressant. she was simply cautioned, just keep it very moderate and do not drink to excess. she was very troubled by the intrusive php intake questioning. it felt like an intensive psychiatric assessment, delving into her past medical and psychiatric history including her sexual assault in college, and asking deeply personal questions about her marriage and other family matters, and the impact of her burnout on her clinical work, and whether she felt it had any adverse impact on her patient care. she recalled being asked what would your colleagues say about your work and immediately it crossed her mind that she feared that they would actually call some of them including one colleague who was vying for her leadership position and seemed to take every opportunity to cast her in a negative light. she did not know what her rights were and whether she should demand the full php report that they already said she had no right to, or simply let a lawyer deal with it. she felt it was deeply unfair but then again, apparently it was their right. she found herself worrying that they would even share their findings with her colleagues on the medical executive committee at her hospital. she was deeply unsettled not only by being advised that she should go to some unusual and costly four-day assessment program out of state, but that, if she did not, the php had the right to not only report her to the board as being non-compliant but, subsequently reviewing her signed disclosure consents, might actually share the entirety of her psychiatric report with them. that the board would actually enforce such a recommendation seemed unconscionable, incomprehensible. but further, she was incredulous that a highly recommended lawyer who routinely represented physicians in matters before the board told her that there was essentially nothing that she could do; even if she challenged it, she would not win. and it would cost tens of thousands of dollars and while she was challenging it, the board would demand the suspension of her practice in order to ensure that she was safe to practice and to protect the public. that was their right, he said, nodding sternly, and it was their duty. she was told it could go on for years! needless to say, her emotional stability in her early period of recovery from burnout and depression became quite tenuous. as her depression worsened and her anxiety intensified and now necessitated another leave from work, her psychiatrist was tempted to add medications to her regimen but her therapist who patiently enabled her to elaborate her story encouraged holding the course so that the two of them could sort out this avalanche of stresses. ‘physicianhood’ stress is normalized it is fair to say that the average physician’s professional life is quite stressful, many would argue immensely more so than most other professionals. that stress takes a toll. numerous studies report a mind-boggling incidence of burnout as high as 50% of the actively practicing physician population. so, prevalent is burnout that it has recently garnered its own world health organization (who) diagnosis code, though it appears that this is the sort of code that is used simply to connote a focus of treatment and not a defined mental illness per se. some researchers now are arguing that burnout is really just another form of depression and ought to be treated clinically. chronic stress itself diminishes resilience and increases the likelihood of new occurrence of emotional illness and substance abuse. it is well known to fuel maladaptive responses in professional and personal life, e.g. inappropriate reactivity in communication and behavior (as is characteristic of disruptive behavior). in 2007, i presented ‘burnout and its toll on physicians’ for the federation of state medical board’s (fsmb) six session conference. an epidemic of disruptive behavior among [page 128] [qualitative research in medicine & healthcare 2019; 3:8665] article no nco mm er cia l u se on ly physicians a web conference: clinical, legal, and disciplinary perspectives and proposed that burnout was a significant driver of disruptive behavior. fortunately, over the prior decade, there has been an intensified interest in understanding physician burnout and exploring remedies. some recent articles reference studies that have begun to explore burnout’s potential impact on errors and patient safety. the national academy of medicine (nam) held a resource-rich conference in 2018 the action collaborative on clinician well-being and resilience which stat news highlighted. in the comments section of the stat article (https://www.statnews.com/2018/02/15/clinicianphysician-burnout-resilience/), i raised multiple concerns about the nebulous notion of ‘potential for impairment’ and the dangerous leeway that term provided for even more aggressive intervention by mlbs and phps and conceivably even peer review (pr) entities. while certainly a well-motivated initiative, this new hypothesized linkage amongst burnout, depression and increased risk of clinical error affecting patient safety could have a paradoxical effect, essentially serving as a trifecta enabling mlbs, phps and pr entities to perceive that they have even more license to compel psychological … assessments (pffdes). also worrisome is the federation of state physician health program’s (fsphp) recently revised php guidelines which newly describe medicine as a ‘safety-sensitive profession’. such subtle labeling also may enable increased scrutiny of complaints about physician behavior, even anonymous ones bearing no objective basis, leading to a lower threshold for ordering stat drug testing in situ and compulsory fitness for duty assessments simply on suspicion. independent of any medical regulatory or other concerns, finding knowledgeable and relatable mental health care and specialized professional life coaching (e.g. for burnout) can indeed be a challenge in and of itself, not to mention the pragmatics of actually engaging such services, independent of whether the mlb, php or pr entity is involved. the dangers for physicians seeking mental health care physician unawareness and naïveté perhaps it is because of the apparent integrity and quality controls of our training institutions that physicians have tremendous trust in the integrity of the medical regulatory systems. and for most who have no disciplinary or alleged suboptimal performance allegations, these are simply benign bureaucratic administrative entities that operate in the background. under ordinary circumstances, an article detailing the rising incidence of mental illness, substance abuse and professional burnout might simply focus on why it is important that physicians have ready access to and actually pursue confidential, high quality mental health care. if you have depression, anxiety or any other form of emotional distress or illness, or a substance abuse issue, or even both, you’d be encouraged to make arrangements to get the help you need. just as in any other initial medical consultation, that help may entail a diagnostic psychiatric evaluation and perhaps being prescribed medication and psychotherapy (i.e. talk therapy). and it may entail other evaluations or treatment, e.g. marital counseling, or substance abuse assessment that that evaluator / treater may not have expertise in. while perhaps embarrassing or inconvenient, physicians should be able to avail themselves of these services without adverse consequences. however, in the current medical regulatory environment, especially with such intrusive and likely ada-impermissible questions on medical licensing and credentialing applications, that is not the case at all. in fact, it may be quite dangerous to seek mental health care. with the emergence of the php movement, physicians came to be considered a special breed of professionals whose illnesses require aggressive intervention by governmental authorities to confront their denial of their lurking illness in order to ‘protect … safety’. the 2019 fsphp guidelines state: today, the php model of care management includes physicians and other healthcare professionals and occurs with the knowledge that i) addictive, psychiatric, or other potentially impairing conditions may be chronic relapsing conditions, and ii) without appropriate treatment and accountability, individual health and public safety are at risk. compulsory (and potentially impermissible) disclosure in contrast to the privacy rights of ordinary citizens and members of other professions, on very questionable grounds a physician may be mandated to reveal the existence of a current or past mental illness or substance use disorder and its treatment. these licensing and credentialing entities have the perceived (or perhaps actual) authority to ask on application invasive questions about your current or past mental health or substance use history. for example: within the past 5 years, have you ever raised the issue of consumption of drugs or alcohol or the issue of a mental, emotional, nervous, or behavioral disorder or condition as a defense, mitigation, or explanation for your actions in the course of any administrative or judicial proceedings or investigation; any inquiry or other proceeding; or any proposed termination by an educational institution; employer; government agency; professional organization; or licensing authority? (from alabama medical license application).2 now, it is not simply the invasiveness of one’s privacy and concerns about confidentiality that is the issue, though this is no small matter. it is what happens when you’ve answered in the affirmative: you can be ordered into a [qualitative research in medicine & healthcare 2019; 3:8665] [page 129] special issue on physician mental health no nco mm er cia l u se on ly state-run diagnostic assessment and treatment program accompanied by lengthy monitoring. after you have disclosed having such diagnoses and/or obtaining treatment for such conditions, even though in the past and having no impact on one’s current professional or personal life, various state and corporate powers have the actual or perceived authority not only to insist, independent of any consideration of your current professional performance, that you get an evaluation. they can also demand that you receive treatment whenever these entities determine that you need such, and that you do so at the ‘preferred provider’ of their choosing. there are at least six profoundly concerning components to this: i) you may be forced to disclose legally protected utmost confidential personal matters including your mental and physical health history and family history (this is designated in various laws as ‘phi protected health information’); ii) that upon some ill-defined and unwarranted determination by a medical regulatory therapeutic complex (mrtc) entity, you may be ordered to submit to an invasive psychological fitness-for-duty evaluation; iii) you may be required to unquestioningly accept its findings; iv) you may be required to immediately comply with the prescribed treatment no matter what it may be; v) such assessments and treatment are to be conducted by any clinical or perhaps even non-clinical provider the state or corporate entity chooses; and vi) you have no right to contest this in any manner. should these raise concerns? one would think so. the medical regulatory therapeutic complex mrtc mlbs, phps and pr entities, including performance appraisal (pa) systems as seen in academic departments and residency training programs, each serve a legitimate if not critically important function; they are not in and of themselves bad or constructed to be harmful. in studying the interrelatedness of these regulatory entities, emmons and coauthors described a seemingly independent but in actuality an aggregated system that works as a cohesive regulatory enterprise with awesome license and credential-determining and thus potentially career-ending power over the subject physician. they termed this entity the medical regulatory therapeutic complex (mrtc). however, alarmingly there is no discernible oversight of this immensely powerful mrtc system as a whole and often no oversight of the individual entities comprising it. its individual entities enjoy a virtually iron-clad immunity from prosecution for their activities and may deny any legal recourse for the affected licensee. all three entities operate virtually free of the constraints of due process, emboldened by their implied permission to act in this manner under the vague but broad banner of ‘protecting the public’. when any human system operates without oversight and free of accountability, it is vulnerable to corruption and susceptible to dramatic deviance from ethical and even legal bounds. as an example, note the propagation of the alleged legitimacy of denying due process to php clients as casually mentioned in the fsphp’s physician health news: phps also assist boards in their ability to respond more rapidly, as they are not burdened with ‘due process’ requirements. state phps function as a clinical arm for regulatory boards. note also their distinct declaration of non-neutrality. medical licensing boards (mlbs) mlbs have immense authority to discipline physicians and to intervene in cases of impairment and unprofessional behavior. mlbs become involved in this arena in a number of ways. a patient or colleague complaint may have been submitted about the physician’s behavior. in this setting, in stark contrast to the manner that complaints about lawyers must be submitted to the state bar, anonymous complaints are permitted. and mlbs themselves, even absent any external complaint, may be the genesis of such complaints, acting ‘on their own motion’. the physician may be deprived of responding to the complaint, even prevented from seeing it with the complainant identity concealed. while a mlb may conduct an investigation into the complaint (the operative parameters of such investigations remain quite obscure), in matters relating to any mental health or substance abuse issue, the mlbs as a general rule send such cases to the php for evaluation. surprisingly, there appears to be no way at this pivotal moment to challenge the basis for this compulsory referral given the wide legislatively granted power of mlbs. as an example of this authority, here is the mlb’s authority as written in the north carolina general statutes: § 90-14. disciplinary authority. (a) the board shall have the power to place on probation … require satisfactory completion of treatment programs … fine, deny, annul, suspend, or revoke a license … any person who has been found by the board to have committed any of the following acts or conduct, or for any of the following reasons: (3) made false statements or representations to the board, or willfully concealed from the board material information in connection with an application for a license …. [thus, physicians’ concern about not disclosing treatment for mental illness or substance abuse, notwithstanding whether such questions may be impermissible] (5) being unable to practice medicine with reasonable skill and safety to patients by reason of illness, drunkenness, excessive use of alcohol, drugs, chemicals, or any other type of material or by reason of any physical or mental abnormality. [you will note that ‘excessive’ is not defined and that the scope of this authority is apparently not [page 130] [qualitative research in medicine & healthcare 2019; 3:8665] article no nco mm er cia l u se on ly time-bound] the board is empowered and authorized to require a physician licensed by it to submit to a mental or physical examination by physicians designated by the board before or after charges may be presented against the physician, and the results of the examination shall be admissible in evidence in a hearing before the board. [this permits complete disclosure of one’s php and preferred partners’ records including that compiled from the polygraph interrogator.] (b) the board shall refer to the north carolina physicians health program all licensees whose health and effectiveness have been significantly impaired by alcohol, drug addiction or mental illness. …. [note that ‘effectiveness’ and ‘significantly impaired’ are not defined, nor is the manner of determination of these parameters by the mlb] (e) the board and its members and staff shall not be held liable in any civil or criminal proceeding for exercising, in good faith, the powers and duties authorized by law. [this establishes the mlb’s immunity; in a later section, similar immunity is codified for the exclusively contracted, mlb funded php]. modeled after the federation of state medical board’s (fsmb) ‘model medical practice act’, many of the elements here are common to other states’ statutes. peer review / performance appraisal (pr/pa) hospitals’ medical staff bylaws generally delineate the role of quality assurance and peer review of physicians. while an outgrowth of the quality assurance / continuous improvement movement amongst corporations in the business sector, peer review is an activity further defined and protected by the federal law known as the health care quality improvement act or hcqia. while it outlines a fair and confidential clinical care review process conducted within an environment of due process, many have found that protections for physicians who feel they have been subject to a wrongful or sham peer review (spr) are so weak as to be non-existent. dr lawrence huntoon has written extensively on the phenomenon of sham peer review. while pr / pa may not directly initiate its focus on allegations of physicians’ mental illness or substance abuse or seeking treatment for these, the pr / pa process may opine that a physician presents a matter of concern that seems to exist in this area and therefore may compel that that physician undergo assessment and perhaps treatment. it is in this manner that a pr / pa may then mandate such pffde and treatment, generally through the state’s php program which this referring entity may genuinely believe to be an independent, benevolent licensed mental health organization. a sham peer review may use such allegations in a hostile manner to establish a pretext of concern while also activating this costly mechanism to consume inordinate resources and effectively derail a physician’s career. given the absence of internal and external oversight of this process as well as of the mrtc as a whole and negligible protection against abuse, the potential for irreversible derailment of a physician’s career via wrongful accusation, hostilely motivated proceedings and a mandated referral process to a non-neutral non-overseen governmental entity is quite significant. once this cascade is begun, it can quickly become perilous and costly. finding specialized counsel knowledgeable in these matters may be challenging. physician health programs (phps) it appears that many phps are the offspring of state medical societies and often remain contractually and even corporately affiliated with them. in addition to their circumscribed legislatively granted authority, they may also enter into a memorandum of understanding not only with their parent organization and the mlb but with other specialty societies as well. in fact, phps may contract to become the exclusive ‘impaired professional’ evaluator for diverse other medical professionals, e.g. veterinarians, pharmacists, dentists et al. it is important to note that, while some (apparently a minority) have a psychiatrist on their staff, the phps are not offshoots of any organized psychiatric entity. however, many licensees and healthcare organizations are under the mistaken impression that these are legitimate psychiatric entities. the absence of such a professional identity, coupled with phps’ penchant for denying that they even conduct diagnostic psychiatric assessments at all, seems to free them from abiding by prevailing and professionally binding psychiatric ethics in the conduct of their weighty forensic activities while operating under the appearance of benevolence and neutrality. phps necessarily conduct some form of diagnostic assessment and do so on direct referral from an external entity like one’s employing hospital; on a physician’s self-referral; and on referral of the mlb which is generally not a referral but a board order. however, as they may be identified as the exclusive program for board-related matters, with the state defining its rights and operational parameters in both statute and administrative code, it’s important to note that each state’s php may be organized differently and operate under other legislatively granted power or perhaps none at all. the problem with phps in theory, phps are a promising endeavor. born out of local hospital impaired physician committees, they were initially intended to serve as a benevolently motivated program for physicians who were manifesting problems with substance abuse, predominantly alcohol though narcotic and other drugs of abuse were also in their purview. as such behavior was rightfully seen as an ill [qualitative research in medicine & healthcare 2019; 3:8665] [page 131] special issue on physician mental health no nco mm er cia l u se on ly ness, phps sought to protect physicians from disciplinary action, proposing to engage them in a treatment program. thus, phps served as a form of a non-disciplinary board diversion rehab program. however, as phps expanded their scope of diagnostic concerns (just as they are doing now with burnout) and tightened their relationships with mlbs, they began developing their own assessment and treatment paradigms and selecting ‘preferred programs’ they wished to work with, some of which their colleagues owned or staffed. additionally, perhaps due to their reliance on significant funding by the mlb (in one state, the mlb contribution amounts to half of its entire budget), they shifted their primary focus from their earlier emphasis on physician rehabilitation to ‘protecting the public’, and began aggressively promoting preemptive identification of illness, specialized assessment, lengthy inpatient treatment and extraordinarily extended post-treatment monitoring programs. the scientific validity of the main study supporting the efficacy of this alleged ‘gold standard’ is debatable. once you go to a php, whether voluntarily or on order of the mlb or another entity, for what you think is going to be a confidentiality-assured diagnostic intake assessment, you may learn to your dismay and detriment that that assessment was neither truly confidentiality-assured nor even a legitimate psychiatric diagnostic assessment covered by the ethical bounds of such. worse, you may discover that you must now go along with everything the php says, based on what its ‘findings’ are, or else you’ll be reported to the mlb or your referring institution as non-compliant. and you may discover that that php may insist it has the right not to share its diagnostic evaluation findings with you. you may also learn then that not only might material from your confidential assessment be shared with the mlb or the referring hospital or accreditation council for graduate medical education (acgme) office or even your personal physician, but you could then have your license whether full or provisional / training immediately suspended, simply on the basis of the still concealed though incontestable findings of the allegedly immune, exclusively contracted php, all conducted behind the valiant banner of needing ‘to protect the public’. the diagnostic evaluations phps conduct are inherently of a psychiatric / behavioral health sort, and fall under the general rubric of a psychological fitness-for-duty evaluation (pffde). there is a well-established body of literature defining the clinical and ethical dimensions of such evaluations. it does not appear, as a rule, that phps abide by these or perhaps even know they exist. the education and professional licensing requirements of php evaluators are quite vague, including whether they are even required to be licensed mental health clinicians or are mandated to undergo annual training in pffde guidelines, pertinent healthcare law or ethics. in fact, one may be surprised to learn that the php as an organization may not even operate as a recognized medical group or corporation, may carry no medical malpractice insurance, and may operate under the guise of an innocuous educational public charity while conducting questionably legitimate forensic diagnostic psychiatric evaluations as officially designated and effectively employed medical investigators for the mlb. it is curious that many state phps vigorously deny even conducting diagnostic evaluations, masquerading the assessment as a ‘peer review’ (perhaps doing so as the state legislature may have explicitly limited their scope to such) or as some sort of informal benevolent chat, or a nebulous form of screening that doesn’t seem to require a medical license to conduct but nevertheless enjoys the weight of a state sanctioned forensic diagnostic psychiatric evaluation. at best, these would seem to be deceptive practices. such compulsory mental health evaluations are in reality comparable to an involuntary outpatient civil commitment, albeit conducted under the threat of emergency license suspension, irreparable damage to one’s reputation and standing and loss of one’s medical career forever and everywhere. civilians subjected to involuntary commitment seem to enjoy immensely more robust civil rights protections. php exclusive referral to novel ‘preferred programs’ with referral propagation alarmingly, while denying physicians access to their evaluation report, phps may ‘recommend’ a referral to a novel out of state ‘preferred’ four-day diagnostic assessment program, one using non-validated, non-peer reviewed evaluation and consultation methodologies. nevertheless, that group’s diagnostic conclusions are deemed definitive and carry nearly infallible weight with the mlb. similar to the php, they present their purportedly non-diagnostic evaluation as being incontestable. the nature and protocol of this four-day evaluation remains obscure though some of these innovative centers, for example acumen assessments in lawrence kansas, feature a polygraph expert on staff. you would be correct in concluding that this is no ordinary mental health program. in fact, to my understanding as a board-certified psychiatrist, no legitimate mental health program in the united states features such. aside from its 1984ish appearance and mental association with backroom interrogation, the united states department of health & human services (usdhhs) and state departments of health have wisely recognized that the american medical association (ama) and other bodies long ago dismissed the alleged scientific merits of such examination, placing the practice in much the same category as phrenology. and yet, phps and their police-empowered mlbs refuse to confront these wrongful practices and by such refusal essentially endorse their highly questionable methodology and conclusions. such endorsement further contaminates the already contaminated assessment and adamant refusal to entertain complaint while thwarting access to contested case status in the administrative judicial [page 132] [qualitative research in medicine & healthcare 2019; 3:8665] article no nco mm er cia l u se on ly system effectively denies due process to the evaluated physician who contests such. the contractual and financial connection of these fourday evaluation programs to the referring php and its national trade group fsphp is also obscure but has been called attention to by at least one state auditor who also documented the denial of due process to 1140 physicians just over the ten-year period of review. sent out of state for such evaluation, one often has no access to counsel as i) they may not be licensed there; ii) you may have been deprived of external contact as your phone may have been taken from you; and iii) it seems to be implied that because your participation in this ill-defined mental/behavioral assessment program is ‘voluntary’, there is no need to engage an attorney. the experience of numerous physicians i and colleagues have spoken with suggests that upon arrival, you are presumed to be an addict ‘in denial’. one would have to acknowledge that holding such a diagnostic presumption at admission via an incontestable referral might tend to color the objectivity of the remainder of the $5000 consultation. at the close of one’s stay, this program, through some yet to be revealed group consensus process, compiles a report and may ‘recommend’ that you be referred to a lengthy in-patient program for your newly diagnosed but incontestable condition. experience suggests that these four day programs too may withhold their records from you for an extended, and critically important, period of time. the aggregate php assessment and recommendation portfolio upon completion, the referring state php receives this preferred program’s findings which apparently routinely corroborates the omniscient diagnostic hunch of the purportedly non-diagnosing referring state php which then informs the physician client of these definitive findings and recommendations. these recommendations may include extended hospitalization at the same or yet another phppreferred center for the newly diagnosed condition. the php encourages subject physicians’ immediate consent. absent such, the php sends these now purportedly definitive findings and recommendations to the mlb, informing them that the physician is non-compliant with their recommendations. the mlb generally treats the php and its preferred partners’ diagnostic evaluation findings as unchallengeable and its recommendations as sacrosanct. it may then order complete and prompt compliance under threat of public order for immediate license sanction. and it may additionally issue public charges of unprofessionalism for being non-compliant with the state’s sovereignly immune order for definitive treatment of the officially diagnosed mental illness, substance abuse or behavioral health matter in the exact manner prescribed. objection to this process is prevented by the board until it may, at its convenience, schedule a board hearing on the matter. unfortunately, the experience of many suggests that these too are inherently biased due process-deprived affairs. such would seem self-evident if only because of that entity’s refusal to disallow the cascade of procedural wrongs which preceded, not the least of which being due process-deprived, methodologically contaminated pffdes. in the interim, the physician is compelled to cooperate with the php-defined treatment and monitoring program or have one’s license suspended pending hearing. the financial and psychological burden of just this initial phase of mrtc engagement php assessment; engaging counsel; attending the four-day evaluation; and contesting any aspect of this assessment process is immense. alas, it may only be the beginning of an arduous, potentially bankrupting and career-ending ordeal. no escape the larger ramifications of these mrtc actions if the mlb declares that your license will be restricted if you do not comply, then, should you remain in opposition, your practice (or training) will be abruptly interrupted, patient care may be jeopardized, and you will be deprived of income from your profession. such loss of income will eventually deprive you of legal representation. your hospital may suspend your credentials and in doing so may be compelled to report you to the national practitioner data bank (npdb) for such. as daunting as things have been thus far, from this point forward, the consequences of challenge to these proceedings only escalate in intensity, career risk and cost. there appears to be no escape from this kafkaesque theater of the absurd, whether from within the administrative legal system in which the board operates with nonsupervised police power or within the civil court system. both judicial systems, the former being termed quasi-judicial, give immense deference to these state entities (i.e. the mlbs and their exclusively contracted phps with their entourage of exclusively selected preferred partners). understandably, these courts presume that they operate in an ethical and law-abiding manner, afford due process, and have both internal and external oversight and legal accountability for wrongdoing. alas, these appear to be false assumptions but it is not within any one physician complainant’s power to establish these deficiencies. even without problematic licensing or credentialing questions, if one self-refers (including being ‘encouraged’ by one’s institution or practice), there remain multiple dangers including misdiagnosis, non-maintenance of confidentiality, prevention of self-direction of treatment and funneling into the ‘preferred’ treatment system and prolonged invasive and costly ‘monitoring’ accompanied by ongoing fear of the php reporting you to the board for an alleged violation of your ‘contract’. it would appear that nearly any interaction with these non-overseen mrtc entities mlb, php, pr or pa body poses the immense risk of complicating your profes [qualitative research in medicine & healthcare 2019; 3:8665] [page 133] special issue on physician mental health no nco mm er cia l u se on ly sional life, tarnishing your reputation, jeopardizing patient care, consuming inordinate financial and psychological resources, and even losing your career forever, everywhere. conclusions perhaps one might speculate that this dystopian recounting surely must be the rare exception rather than the rule. one would be forgiven if you found yourself saying no, that can’t be! they couldn’t (wouldn’t) do that!? to me? just because i have (or had) depression or burnout? or because i drank too much at a christmas party and was not on duty? unfortunately, abundant case interview experience with hundreds of physicians from around the country has revealed such calamitous outcomes from similar unsubstantial or unwarranted causes of engagement. implications for physicians seeking mental health or substance abuse care presuming the validity of the foregoing, might these concerns be causing physicians to re-consider whether they want to risk acknowledging a mental health or substance abuse diagnosis on their application or seek assistance from a php or even any mental health care professional? studies strongly suggest so. on your licensing or credentialing application, you risk the potential consequence of either acknowledging that you are getting or in the past received treatment for a condition … or, answering the intrusive questions negatively so as to not enter into this career-threatening cascade, you risk discovery of your lying about getting treatment. for many, their reasoning is pragmatically expedient. i’m busy; i don’t have time to take care of myself. it’s already been drilled into me that my needs are secondary to the mission of patient care. i’m seen as weak if i seek help. i ought to be able to overcome this. the risk of this ‘either acknowledge … or lie’ option is way too great. so, simplest is just don’t get treatment that way i don’t have to risk exposure and i’ll just have to toughen up and find a way to survive this. such pragmatism seems entirely reasonable. unfortunately, as understandable as it is, it can also be disastrous. that one would have to fear getting treatment and therefore suffer the consequences of not getting needed treatment, including deepening depression and suicide, or another worsening mental illness or substance abuse condition, is not just regrettable; it is antithetical to the very principles of the profession of which these physicians are themselves the central healers. to put them in such a bind is unconscionable. to allow such a bind to continue is ethically untenable. that one would avoid seeking critically important even life-saving treatment for fear that acknowledging such would then get them sent into the inescapable state-affiliated php machinery and provide literally no recourse to object and halt the process and subject it to external review should be of urgent concern to every physician and every leader in healthcare. a future article will explore potential avenues of recourse. for now, it must suffice to say that if you are a physician, it important that you know that you have a right to be ill, and to get well, and to be protected from this care-seeking jeopardizing your job or your career or your reputation. you must remain vigilant about these potential perils, whether intentional and opportunistic or simply due to the amorality of dangerously defective systems. you have a right to practice according to the dictates of your profession and your patients too have rights to benefit from your continued care. you must take an active and informed role in protecting your and your colleagues’ rights not only to seeking needed care to which you and they are entitled but to a fulfilling medical career free from burdensome, discriminatory and unwarranted punitive or opportunistic intrusion. references 1. the medical society of new jersey vs fred m. jacobs, md, jd, and the new jersey state board of medical examiners. memorandum of the united states as amicus curiae. civ. a. 93 3670 (wgb). oct. 5, 1993 united states district court, new jersey. available from: https://www.ada.gov/ briefs/mednjbr.pdf 2. wible p, palermini a. physician-friendly states for mental health: a review of medical boards. pamela wible md 2019. available from: https://www.idealmedicalcare.org/physician-friendly-states-for-mental-health-a-review-of-medicalboards/ 3. goren w. medical licensing boards, physician health programs, and the lack of ada compliance: an opportunity for plaintiff lawyers. understanding the ada 2019. available from: https://www.williamgoren.com/blog/2019/07/13/medical-licensing-boards-physician-health-programs-ada-compliance/ 4. reese s. is it burnout or depression, and does the solution differ? medscape 2018. available from: https://www.medscape.com/viewarticle/903025 5. page l. burnout might really be depression; how do doctors cope? medscape 2018. retrieved from https://www.medscape.com/viewarticle/891005 6. national academy of medicine nam 2018. establishing clinician well-being as a national priority in action collaborative on clinician well-being and resilience [internet] available from: https://nam.edu/establishing-clinician-wellbeing-as-a-national-priority/ 7. dzau v. collective action needed to stem burnout and restore clinician well-being and resilience. stat 2018. available from: https://www.statnews.com/2018/02/15/clinicianphysician-burnout-resilience/ 8. federation of state physician health programs 2019. physician health program guidelines [internet]. available from: https://www.fsphp.org/guidelines. [page 134] [qualitative research in medicine & healthcare 2019; 3:8665] article no nco mm er cia l u se on ly 9. emmons r, manion k, andrew l. systematic abuse and misuse of psychiatry in the medical regulatory-therapeutic com-plex. j am phys surg. 2018;23:110-4. available from: http://www.jpands.org/vol23no4/emmons.pdf 10. skipper g, specht t. state phps protect the public and save careers. physician health news. 2013;18:4. [newsletter]. available from: https://www.fsphp.org/assets/docs/ fsphp_newsletter_2013.pdf 11. north carolina general assembly. general statutes. available from: https://www.ncleg.gov/enactedlegislation/ statutes/pdf/bysection/chapter_90/gs_90-14.pdf 12. federation of state medical boards 2018 guidelines for the structure and function of a state medical and osteopathic board. available from: http://www.fsmb.org/siteassets/advocacy/policies/guidelines-for-the-structure-and-functionof-a-state-medical-and-osteopathic-board.pdf 13. huntoon l. sham peer review: violations of due process and fundamental fairness. j am phys surg. 2018;23. available from: https://www.jpands.org/vol23no3/huntoon.pdf 14. huntoon l. tactics characteristic of sham peer review. j am phys surg. 2009;14. available from: https://www.jpands. org/vol14no3/huntoon.pdf 15. dupont r, mclellan at, white wl, et al. setting the standard for recovery: physicians' health programs. j. subst. abuse treat 2009;36:159-71. 16. american psychological association. professional practice guidelines for occupationally mandated psychological evaluations. available from: http://www.apa.org/practice/ guidelines/psychological-evaluations.aspx 17. office of the state auditor, state of north carolina. performance audit north carolina physicians health program 2014. available from: https://www.auditor.nc.gov/epsweb/reports/performance/per-2013-8141.pdf 18. gold kj, andrew lb, goldman eb, schwenk tl. “i would never want to have a mental health diagnosis on my record”: a survey of female physicians on mental health diagnosis, treatment, and reporting. gen hosp psychiatry 2016;43:51-7. [qualitative research in medicine & healthcare 2019; 3:8665] [page 135] special issue on physician mental health no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2019; 3:8649] [page 107] introduction could a pediatrician in marriage counseling 10 years ago be mandated to disclose her therapy records to the state board? yes. could a dermatologist with postpartum depression 3 years ago be required to defend her competence before the board? yes. should a medical student worry that a licensing board might read his psychological evaluation for test anxiety? yes. state medical boards may access applicants’ confidential health records and require that all 3 individuals defend their competence to practice medicine. are medical boards injuring physicians by violating their rights? many, like this physician, say yes. why are mental health questions still allowed to be on there? i have had postpartum anxiety/depression three times now and i feel like it is none of their damn business. so, i have lied about it on my applications. also, i feel these questions could contribute to doctors not seeking help, especially for serious problems that could require a mental health hospitalization. do these questions have an adverse effect on doctors and medical students presenting (or not) for care they may desperately need? we all desire competent, healthy doctors who deliver excellent patient care. state medical boards exist to protect the health, safety, and welfare of patients through licensing, investigating, and disciplining physicians. their mission is to protect the public from impaired physicians, yet medical boards may be impairing physicians’ access to confidential compassionate health care by subjecting doctors to mental health questions that violate united states law. one doctor reports: after reading an article about one woman’s journey through hell after being honest on those application questions, i sought care an hour away. i drove an hour in another direction to nervously fill prescriptions for antidepressants. i required several meds to stop thinking of suicide all day every day. my suicidal thoughts were 100% workrelated. suicide is an occupational hazard of the medical profession.1 though students enter medicine with their mental health on par with or better than their peers, they are 3 times more likely to kill themselves, according to the physician-friendly states for mental health: a comparison of medical licensing board applications pamela wible,1 arianna palermini2 1family physician, founder ideal medical care, eugene, or, usa; 2medical student abstract do medical boards undermine physician mental health by breaching physician confidentiality and privacy? we analyze the initial medical licensing process in each state to determine if qualified applicants who report mental illness experience discrimination. we then identify the most favorable states for physician mental health. correspondence: pamela wible, p.o. box 5225, eugene, or 97405, usa. tel.: +1.541.345.2437. e-mail: roxywible@comcast.net acknowledgments: the authors thank all physicians who submitted their lived experiences with medical boards and physician health programs. dedication: the article is dedicated to our brothers and sisters in medicine who lost their lives to suicide in pursuit of healing others. contributions: ap performed the majority of research to acquire initial licensing applications from all state medical boards. pw drafted manuscript that was edited by both authors. conference presentation: portions of prior draft manuscript were presented at psych congress in san diego, california, on october 6, 2019. key words: physician mental health; physician suicide; physician depression; medical boards; physician health programs. disclosures: authors report no financial disclosures or conflict of interest. funding: research project was unfunded. authors were unpaid volunteers. received for publication: 31 october 2019. accepted for publication: 14 november 2019. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2019 licensee pagepress, italy qualitative research in medicine & healthcare 2019; 3:107-119 doi:10.4081/qrmh.2019.8649 qualitative research in medicine & healthcare 2019; volume 3:107-119 no nco mm er cia l u se on ly american medical student association. in some residency programs 75% of interns meet criteria for major depression.2 suicide risk increases with untreated mental illness. physicians who die by suicide are less likely to be receiving mental health care compared with non-physician suicides. physicians are more likely to self-medicate for anxiety, depression, and suicidality with tragic outcomes. doctors are reported to have the highest suicide rate of any profession even higher than the military-according to findings presented at the 2018 american psychiatric association annual meeting.3 what is causing our physician mental health crisis? physicians are routinely exposed to tragedy and death resulting in occupationally induced anxiety, depression, and post-traumatic stress disorder (ptsd). yet doctors receive no routine on-the-job support. instead, they risk punishment when asking for help. state boards, hospitals, even health plan and malpractice insurance companies interrogate doctors about their mental health, read their confidential medical records, and then deny health plan participation, medical liability coverage, hospital privileges, and state licensure. doctors with occupational distress may be referred to physician health programs (phps) where they are required to participate in 12-step addiction recovery with witnessed random urine drug screens even when they have never used drugs as this psychiatrist reports: i’m amazed at the punitive terms i’ve had to face in recovering professionally from a depressive episode for which i was hospitalized last year. one of my requirements is to be urine tested for substance abuse, despite multiple demeaning assessments that have rendered the clear verdict that i don’t have a substance use problem. i’ve had to attend costly treatments for ‘professionals’ in which i am the only female in a group of male physicians who have had sex with their patients or have become assaultive with staff. any efforts on my part to point out that i don’t quite ‘fit’ are taken as further evidence of my pathology. i’m a single parent as well, so that each of these ‘treatments’ i’m required to attend takes me away from my two children for extended periods of time. throughout all of this, nobody has told me how common my feelings are that a large number of doctors feel depressed and suicidal at times. rather, i’ve been told that my actions are unheard of for someone in mental health and may preclude me from ever providing therapy again since ‘we tell patients to never give up hope, but you did’. hopefully, in the near future this won’t be a taboo subject, and there will be places for those like me to seek responsible and confidential care. while phps have been effective for some physicians with substance abuse, physicians have also died by suicide under the care of these programs.4 phps hold a monopoly in the provision of state-board-sanctioned physician assistance services in most states. to avoid punishment by phps and boards (that may restrict licensure and publish doctors’ mental health diagnoses online) physicians drive hundreds of miles out of town, use fake names, and pay cash for off-the-grid care. one doctor reports: i’ve been in practice 20 years and have been on antidepressants and anxiolytics for all of that time. i drive 300 miles to seek care and always pay cash. i am forced to lie on my state relicensing every year. there is no way in hell i would ever disclose this to the medical board they are not our friends. results from a 7-year investigation of 1300 physician suicides reveal that doctors (and medical students) die by suicide due to fear of seeking care that would be disclosed on their applications for residency, hospital privileges, and state licensure. fear of seeking treatment leads to delayed diagnoses thereby increasing anxiety, depression, substance abuse, and suicide.5 one doctor shares: do you know what really hurts? the fact that anyone can look me up on the internet and read my dirty laundry. i’m publicly shamed (by my medical board), punished for being ill. i will only know peace when i am gone. the american medical association (ama) code of medical ethics upholds the right of confidentiality for all seeking health care. a therapeutic alliance requires trust to allow full disclosure of sensitive and personal information. individuals receiving care believe their medical records will be safeguarded and only released with their consent. physicians hold confidentiality sacred and take an oath to preserve it at all costs. physicians are understandably shocked when their own personal health information is accessed by employers, hospitals, and medical boards under the pretense of public safety. health insurance portability and accountability act (hipaa) provides data privacy and security provisions to safeguard medical information for all us citizens. information about health status, provision of health care, or payment for health care that is collected by a covered entity (such as a doctor or health center) and can be linked to an individual is protected health information (phi) under federal law. though physicians must uphold patient hipaa rights or face harsh penalties, physicians are expected to waive their own hipaa rights to medical institutions such as state boards. the americans with disabilities act (ada) of 1990 states: no covered entity shall discriminate against a qualified individual on the basis of disability in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment.yet competent physicians suffer repeated invasion of privacy and discrimination by medical institutions in violation of the ada. [page 108] [qualitative research in medicine & healthcare 2019; 3:8638] article no nco mm er cia l u se on ly materials and methods we queried via social media and emailed 6000 us physicians: have you ever faced discrimination, limitation of license, or delay/denial of your medical license due to mental health issues? a selection of de-identified submissions is published with permission. we analyzed mental health questions on medical board initial licensing applications from all 50 states and the district of columbia. most applications were accessed online or by portable document format. when only available through a portal, a login was created. when an application was unavailable or no mental health question was identified, the board was contacted by email and/or phone to confirm the absence or presence of mental health questions and verify wording when present. all mental health and impairment questions were organized on a spreadsheet to compare quantity and quality of questions. substance use queries were removed. the focus of this research is on non-drug-related endogenous mental health conditions and corresponding questions by medical boards. we italicized key mental health phrases for ease of reading and graded states based on invasiveness of mental health questions into 5 categories a through f. grade a: states with no mental health questions or one or 2 straightforward current impairment question(s) that do not mention mental health. grade b: states with progressive mental health question(s) linked to current impairment. grade c: states with mental health question(s) spanning the last 5 years. grade d: states with have-you-ever questions related to mental health, mental health questions beyond 5 years, or a requirement for peer reference on applicant’s mental health. grade f: states with highly invasive mental health questions unlinked to current impairment that contain confusing, punitive, or adversarial language. results grade a: states with no mental health questions or one or 2 straightforward current impairment question(s) that do not mention mental health. 9 states: connecticut, hawaii, kentucky, maine, michigan, nevada, new york, pennsylvania, wyoming. connecticut, hawaii, michigan, and new york are the most physician-friendly of all states with no mental health or impairment questions. kentucky asks: are you currently suffering from any condition for which you are not being appropriately treated that impairs your judgement or that would otherwise adversely affect your ability to practice medicine in a competent, ethical and professional manner? maine asks: are you physically and mentally able to perform all the essential functions or services necessary to exercise the privileges or services applied for with or without reasonable accommodation? are you able to perform these functions without significant risk or injury to yourself or others? nevada asks: do you currently have a medical condition which in any way impairs or limits your ability to practice medicine with reasonable safety and skill? if you currently have a medical condition which in any way impairs or limits your ability to practice medicine, is that impairment or limitation reduced or ameliorated because of the field of practice, the setting, the manner in which you have chosen to practice, or by any other reasonable accommodation? pennsylvania asks only about drug-related impairment: do you currently engage in or have you ever engaged in the intemperate or habitual use or abuse of narcotics, hallucinogens, or other drugs or substances that may impair judgement or coordination? wyoming has no direct mental health questions, though reference must answer: does the applicant’s health allow for the safe and competent practice of medicine? grade b: states with progressive mental health question(s) linked to current impairment. 14 states: california, illinois, indiana, iowa, maryland, missouri, new jersey, new mexico, north carolina, south carolina, tennessee, vermont, virginia, wisconsin. california asks: do you currently have any condition (including, but not limited to emotional, mental, neurological or other physical, addictive, or behavioral disorder) that impairs your ability to practice medicine safely? illinois asks: do you now have any disease or condition that presently limits your ability to perform the essential functions of your profession, including any disease or condition generally regarded as chronic by the medical community, i.e., i) mental or emotional disease or condition; ii) alcohol or other substance abuse; iii) physical disease or condition? if yes, attach a detailed statement, including an explanation whether or not you are currently under treatment. indiana asks: do you now have any disease or condition that presently limits your ability to perform the essential functions of your profession, including any disease or condition generally regarded as chronic by the medical community, i.e., i) mental or emotional disease or condition; ii) alcohol or other substance abuse; iii) physical disease or condition? iowa asks 5 current impairment questions. the first is: do you currently have a medical condition which in any way impairs or limits your ability to practice with reasonable skill and safety? follow-up questions: are you receiving ongoing treatment or participating in a monitoring program that reduces or eliminates the limitations or impairments caused by either your medical [qualitative research in medicine & healthcare 2019; 3:8649] [page 109] special issue on physician mental health no nco mm er cia l u se on ly condition or use of alcohol, drugs, or other chemical substances? does your field of practice, or the setting or the manner in which you have chosen to practice, reduce or eliminate the limitations or impairments caused by your medical condition or use of alcohol, drugs, or other chemical substances? the final 2 questions relate to current drug use. medical condition is defined as any physiologic, mental or psychological condition, impairment or disorder, including drug addiction and alcoholism. maryland asks: do you currently have any condition or impairment (including, but not limited to substance abuse, alcohol abuse, or a physical, mental, emotional, or nervous disorder or condition) that in any way affects your ability to practice your profession in a safe, competent, ethical, and professional manner? missouri asks the same questions as illinois though adds sexual disorder: do you currently have any condition or impairment which in any way affects your ability to practice in a professional, competent and safe manner, including but not limited to: i) a mental, emotional, nervous or sexual disorder, ii) an alcohol or substance abuse disorder or iii) a physical disease or condition? states such as missouri have updated their questions to avoid discrimination against physicians with mental illness reports one psychiatrist: i have experienced discrimination and delay in getting my missouri medical license due to my mental illness. i have bipolar disorder in remission for years. never affected my ability to practice (my only mental illness which has affected my ability to practice has been my ptsd secondary to being a physician). years ago, the missouri application asked whether you were diagnosed with a psychotic disorder, and it had schizophrenia and bipolar disorder in parenthesis. so, of course, i had to answer yes. as a result, i had to undergo an additional yearly evaluation by my psychiatrist and he had to write a letter to the board saying that i was safe to practice medicine even though i have a psychotic disorder. my license was always delayed and it was a nightmare renewing every year. now the missouri board has removed that question so they must have caught some heat. but i felt very violated and targeted with that question. new jersey asks 4 impairment questions. the first is: do you have a medical condition which is any way impairs or limits your ability to practice medicine with reasonable skill and safety? the next 2 are related to current use of chemical substances and the final question asks about any diagnosis of pedophilia, exhibitionism, and voyeurism. the entire section on medical conditions is preceded with a statement about an applicant’s fifth amendment right against self-incrimination. new mexicoasks: do you have a physical or mental condition that would affect your ability, with or without reasonable accommodation, to provide appropriate care to patients and otherwise perform the essential functions of a practitioner in your area of practice without posing a health or safety risk to your patients? if yes, what accommodations would help you provide appropriate care to patients and perform other essential functions? north carolina asks: do you currently have any medical, chemical dependency or psychiatric condition that might adversely affect your ability to practice medicine or surgery or to perform the essential functions of your position? an emergency physician reports: i was sued. overwhelmed with grief and fear, i took antidepressants and saw a psychiatrist. i paid cash and considered using a false name. i had already seen the north carolina medical board send a physician to 6 weeks of inpatient alcohol treatment due to a complaint without any proof he was drinking. that saved his license but he owed an astronomical bill. south carolina asks: are you currently being treated for any physical, mental or emotional condition that might interfere with your ability to competently and safely perform the essential functions of practice as a physician? tennessee asks: do you currently have any physical or psychological limitations or impairments caused by an existing medical condition which are reduced or ameliorated by ongoing treatment or monitoring, or the field of practice, the setting or the manner in which you have chosen to practice? tennessee also asks: have you ever been diagnosed as having or have you ever been treated for pedophilia, exhibitionism, voyeurism or other diagnosis of a predatory nature? (reference grade b section end note on predatory/criminal behaviors). vermont has a section entitled: medical condition, treatment, use of chemicals or illegal substances. it begins with definitions: the ability to practice medicine is a term that includes: i) the cognitive capacity to make and exercise reasoned medical judgments, and to learn and keep abreast of medical developments; ii) the ability to communicate those judgments and medical information to patients and other health care providers, with or without the use of aids or devices, such as voice amplifiers; and iii) the physical capacity to perform medical tasks and procedures, with or without the use of devices, such as corrective lenses or hearing aids. medical conditions include physiological, mental or psychological conditions with a non-comprehensive list that includes emotional and mental illnesses, learning disabilities, drug addiction, and alcoholism. currently means recently enough to have a real or perceived impact on one’s functioning as a medical pro[page 110] [qualitative research in medicine & healthcare 2019; 3:8649] article no nco mm er cia l u se on ly fessional. ‘chemical substances’ means alcohol, drugs (legal and illegal), and prescribed medications. this section has 3 main questions, each with a follow-up question and place to upload relevant documents. all focus on current impairment. two relate to substance use and the other reads: do you have a medical condition that in any way impairs your ability to practice medicine in your field of practice with reasonable skill and safety? virginia asks: do you currently have any mental health condition or impairment that affects or limits your ability to perform any of the obligations and responsibilities of professional practice in a safe and competent manner? currently means recently enough so that the condition could reasonably have an impact on your ability to function as a practicing physician. wisconsinhas 5 impairment questions: do you have a medical condition, which in any way impairs or limits your ability to practice medicine with reasonable skill and safety? follow-up questions are: if yes, are the limitations or impairments caused by your medical condition reduced or ameliorated because you receive ongoing treatment (with or without medications) or participate in a monitoring programs? if yes, are the limitations or impairments caused by your medical condition reduced or ameliorated because of the field of practice, the setting, or the manner in which you have chosen to practice? the fourth question is related chemical substance impairment and final question: have you ever been diagnosed as having or have you ever been treated for pedophilia, exhibitionism, voyeurism? note: new jersey, tennessee, and wisconsin have a similar question on criminal/predatory behavior (pedophilia, exhibitionism, voyeurism) as do alabama, ohio, minnesota, mississippi, and washington. medical boards must protect patients from criminal behavior and we do not penalize states for these questions. grade c: states with mental health question(s) spanning the last 5 years. 10 states: arizona, colorado, minnesota, montana, north dakota, ohio, oklahoma, oregon, texas, utah. arizona lists mental health questions in confidential questions. the primary question: have you received treatment within the last 5 years for use of alcohol or a controlled substance, prescription-only drug, or dangerous drug or narcotic or a physical, mental, emotional, or nervous disorder or condition that currently affects your ability to exercise the judgment and skills of a medical professional? if so, provide the following: i) a detailed description of the use, disorder, or condition; and ii) an explanation of whether the use, disorder, or condition is reduced or ameliorated because you receive ongoing treatment and if so, the name and contact information for all current treatment providers and for all monitoring or support programs in which you are currently participating. iii) a copy of any public or confidential agreement or order relating to the use, disorder, or condition, issued by a licensing agency or health care institution within the last 5 years, if applicable. colorado asks: within past 5 years, have you engaged in any conduct or exhibited any behaviors that resulted in an impairment in your ability to practice in a safe, competent, ethical and professional manner? minnesota asks: have you within the past 5 years been advised by your treating physician that you have a mental, physical, or emotional condition, which, if left untreated, would be likely to impair your ability to practice medicine with reasonable skill and safety? an affirmative answer requires 5 additional questions regarding current treatment, compliance, and name of treating physician. minnesota also asks: have you ever been diagnosed as having or have you ever been treated for pedophilia, voyeurism, or other sexual behavior disorders? we strongly feel that sexual behavior disorders are too broad as focus should be on criminal/predatory conduct only. montana asks: have you been diagnosed within the past 5 years with a physical condition or mental health disorder including potential health risk to the public? north dakota asks: within the last 2 years have you been treated for any physical, mental or emotional condition which impaired or could be said to impair your ability to practice medicine safely and competently? ohio asks 4 mental health questions. the first 3 are: in the past 5 years, have you been diagnosed as having, or been hospitalized for a medical condition which in any way impairs or limits your ability to practice medicine with reasonable skill and safety? are the limitations or impairments caused by your medical condition reduced or ameliorated because you receive ongoing treatment or received treatment in the past (with or without medication) or participate in a monitoring program? are the limitations or impairments caused by your medical condition reduced or ameliorated because of the field of practice, the setting, or the manner in which you have chosen to practice? if you receive such ongoing treatment or participate in such monitoring program the board will make an individualized assessment of the nature, severity, and duration of the risk associated with an ongoing medical condition. have each treating physician submit a letter detailing the dates of treatment, diagnosis, and prognosis. a final question is: have you ever been diagnosed as having, or have been treated for, pedophilia, exhibitionism, or voyeurism? (reference end note grade b section on predatory/criminal behaviors). oklahoma asks: do you currently have or have you had within the past 2 years any mental or physical disorder or condition, which, if untreated, could affect your ability to practice competently? [qualitative research in medicine & healthcare 2019; 3:8649] [page 111] special issue on physician mental health no nco mm er cia l u se on ly oregon has 3 mental health questions. the first: within the past 2 years, have you participated in a program (other than the oregon php) for evaluation, monitoring, or treatment for any issue in lieu of or as a condition of resolving a matter before a health care program or facility or a regulatory or licensing board or has such action been pending or proposed? issue includes, but is not limited to, substance use, communication, or boundary issues. (if yes provide full details and dates to include the name and location of the diversion program, regulatory board, healthcare program or facility, and/or court, and reasons for and results of entering the program). the second: do you currently have, or have you had within the past 2 years, any physical, mental, or emotional condition which impaired or does impair your ability to practice your health care profession safely and competently? the final question: within the past 2 years, have you been admitted to any hospital or other treatment facility for any physical, mental or emotional condition or substance use disorder which impaired or does impair your ability to practice your health care profession safely and competently? (if yes to either, provide full details and name of healthcare professional providing treatment. request the healthcare professional send directly to the board a statement regarding the ability to safely practice medicine). texas has a mental and physical health section with 5 questions with mandatory submission of another form for any affirmative answer. the first 3 relate to selfreferral to the texas physicians health program, substance use within past 5 years, and physical/neurologic condition impairments within 5 years. the mental health question is: within the past 5 years, have you been diagnosed with or treated for any: psychotic disorder, delusional disorder, mood disorder, major depression, personality disorder, or any other mental health condition which impaired or does impair your behavior, judgment, or ability to function in school or work? if you answered yes are the limitations caused by your mental condition or substance abuse/dependency problem reduced or ameliorated because you receive ongoing treatment (with or without medication) or because you participate in a monitoring program? one internist reports: i am applying for my texas license and i feel my rights are being violated. i have well-managed depression. i was asked do you have a mental condition yes, and then i was asked does it affect how you function at work no. i thought that would be the end of it, but now i need a treating physician statement, a statement from my program director, and i need to justify why i said no to it not affecting how i function at work. i’m required to list all my medications from the past 5 years and all physicians who have treated me. how is this not a hipaa violation? why are they still allowed to do this? my application has been flagged as impaired and needs to go before the board and people who have never met me will decide if i am a danger to my patients. i have no money for a lawyer. if i fight this it can delay my license and my being able to work. my friends with no medical issues were approved months ago and here i am still waiting. utahasks: if you are licensed in the occupation/profession for which you are applying, would you pose a direct threat to yourself, to your patients or clients, or to the public health, safety, or welfare because of any circumstance or condition? have you ever been declared by any court or competent jurisdiction incompetent by reason of mental defect or disease and not restored? utah’s one have-you-ever question is far less invasive than those in grade d section. grade d: states with have-you-everquestions related to mental health, mental health questions beyond 5 years, or a requirement for peer reference on applicant’s mental health. 10 states: arkansas, district of columbia, georgia, idaho, kansas, louisiana, nebraska, new hampshire, south dakota, west virginia. arkansas asks: are you currently suffering from any condition for which you are not being appropriately treated that impairs your ability to practice medicine or to perform professional or medical staff duties in a competent, ethical, and professional manner? if yes, explain. are you currently, or have you ever been monitored by a physician health committee in any state? if yes, explain, and ask the physician health committee to send documentation of your status. non-impaired physicians have been mandated to impaired practitioner programs as retaliation. these programs (phps), governed by the federation of state physician health programs, exist under private contracts in all states except california, nebraska, and wisconsin. an occupational medicine physician explains: phps remain largely non-compliant with ada laws and regulatory guidelines in assessing medical and psychiatric fitness of physicians. they receive revenue from contracts with physician employers and residency programs plus referred medical students/physicians who pay costly out-of-pocket fees or risk career destruction. physician employers liberally refer to phps for virtually any reason. phps even encourage third-party referrals. aggrieved spouses, jilted lovers, market competitors have all successfully required php evaluations of physicians. district of columbia is a federal district with its own medical licensing board that asks 2 non-drug-related im[page 112] [qualitative research in medicine & healthcare 2019; 3:8649] article no nco mm er cia l u se on ly pairment questions: do you have a medical condition or have you become aware of any medical condition that impairs or limits your ability to practice your profession? have you ever engaged in any conduct that either indicated an impairment, or actually impaired, your ability to practice your profession? two additional questions are: have you ever entered into a monitoring program for purposes of monitoring your abuse of alcohol, drugs, or other controlled substances? have you ever entered into a monitoring program for purposes of monitoring your professional behavior including recordkeeping, billing, boundaries, quality of care or any other matter related to the practice of your profession? we find referrals based on any other matter related to the practice of your profession to be broad and subjective given that one anonymous and unsubstantiated complaint can lead to a physician php referral and undermine a doctor’s career. georgia has no impairment or mental health questions though requires 3 peer references to answer: does this physician have, or has this physician had in the past, any mental or physical illnesses or personal problems that interfere with his/her medical practice? unlike the single wyoming (grade a) peer reference, georgia requires multiple colleagues to reveal any mental health issue at any time in the life of a physician peer including past personal problems. such questions pose barriers to seeking mental health care and create collegial distrust when physicians fear revealing their struggles with peers who may report them to boards. two physicians explain: isn’t it more appropriate to ask a reference about a physician’s knowledge, reliability, integrityperformance? mental health questions have a chilling effect that i admit have kept me from seeking mental health support when it would have been wise to do so. stigma is so severe that i have heard many physicians state that it would be better to die from suicide than be admitted to our hospital’s psychiatric unit. my psychiatrist requested i report to the georgia medical board my inpatient care for a major depressive disorder. they stamped a 5-year private consent order on me whereby i had to submit to random urines (though there was no history of substance abuse). if i knew what i would be subjected to over the next 5 years and the expense of hundreds of urines, i would not have fulfilled his request. the toughest challenge was getting through the red tape with hospital privileges when they found out i had been treated for depression. i know dozens of physicians under psychiatric care for depression. they dare not relay such to the board secondary to what i endured. idaho asks: have you ever been diagnosed and/or treated for any mental, physical, cognitive condition including substance use disorder that may affect your ability to practice medicine with reasonable skill and safety? kansas has 4 impairment questions. the first: within the last 2 years have you been diagnosed or treated for any physical, emotional or mental illness or disease, including drug addiction or alcohol dependency, which limited your ability to practice the healing arts with reasonable skill and safety? the second on self-medicating: within the last 2 years have you used controlled substances, which were obtained illegally or which were not obtained pursuant to a valid prescription order or which were not taken following the directions of a licensed health care provider? the third: have you ever practiced your profession while any physical or mental disability, loss of motor skill or use of drugs or alcohol impaired your ability to practice with reasonable safety? given widespread sleep-deprivation impairment (and use of stimulants) during residency, nearly all physicians (if responding honestly) would admit yes. the final question: do you presently have any physical or mental problems or disabilities which could affect your ability to competently practice your profession? one doctor reveals: i used samples of paxil and had my spouse write me prescriptions for lexapro, buspar, paxil, and sleeping pills over the years. i did not trust other doctors. i did not want any of this stuff in my records as i did not want to be seen as crazy (this is how many doctors refer to psychiatric patients). louisiana asks: in the last 10 years prior to this application have you had any physical injury or disease or mental illness or impairment, which could reasonably be expected to affect your ability to practice medicine or other health profession? nebraska asks: do you currently, or have you had, any physical, mental, or emotional condition which impaired, or does impair your ability to practice your health care profession safely and competently? within the last 5 years, has any licensing agency or credentialing organization initiated any inquiry into your physical, mental or emotional health? as we noted previously, inquiries can be retaliatory and the question posed by nebraska would imply physician guilt for having psychological needs. new hampshire asks: have you ever had any physical, emotional, or mental illness which has impaired or would be likely to impair your ability to practice medicine? a physician with postpartum depression decades ago must answer yes leading to invasion of privacy unlinked to current impairment. south dakota asks 4 questions. two are related to drug use and the other 2 are: do you have a physical, mental or emotional condition which may adversely affect your practice? have you been treated for or do you have a diagnosis for any mental health condition? (if [qualitative research in medicine & healthcare 2019; 3:8649] [page 113] special issue on physician mental health no nco mm er cia l u se on ly yes, please ask your treating provider to send a status letter to the board office). phrasing indicates that a physician must reveal any lifetime mental health condition to the board which is invasive and unlinked to current impairment. west virginia asks: have you had any interruption in your practice of medicine which might reasonably be expected by an objective person to currently impair your ability to carry out the duties and responsibilities of the medical profession in a manner consistent with standards of conduct for the medical profession? have you ever had anything occur which might reasonably be expected by an objective person to currently impair your ability to carry out the duties and responsibilities of the medical profession in a manner consistent with standards of conduct for the medical profession? though west virginia mental health questions focus on current impairment and are preferable to the wording of all other states graded d, we have placed west virginia in this category due to have-you-ever questions. grade f: states with highly invasive mental health questions unlinked to current impairment that contain confusing, punitive, or adversarial language. 8 states: alabama, alaska, delaware, florida, massachusetts, mississippi, rhode island, washington. alabamaasks 3 mental health questions. the first: within the past 5 years, have you ever raised the issue of consumption of drugs or alcohol or the issue of a mental, emotional, nervous, or behavioral disorder or condition as a defense, mitigation, or explanation for your actions in the course of any administrative or judicial proceedings or investigation; any inquiry or other proceeding; or any proposed termination by an educational institution; employer; government agency; professional organization; or licensing authority? the second: have you ever been diagnosed as having or have you ever been treated for pedophilia, exhibitionism, or voyeurism? final question: are you currently engaged in the excessive use of alcohol, controlled substances, or the illegal use of drugs, or received any therapy or treatment for alcohol or drug use, sexual boundary issues or mental health issues? the application explains: the term currently does not mean on the day of, or even in the weeks or months preceding the completion of this application. rather it means recently enough so that the condition referred to may have an ongoing impact on one’s functioning as a physician within the past 2 years. we wonder why the application did not instead read within the last 2 years. the final question suggests that applicants must reveal if they have ever received any therapy for mental health issues in their lifetime regardless of current impairment. for this reason, alabama is graded f. alaskaranks worst of all states with 25 yes-or-no questions related to mental health, many invasive have-you-everhad questions unlinked to current impairment. the first: has your ability to practice medicine in a competent and safe manner ever been impaired or limited by any condition, behavior, impairment, or limitation of a physical, mental, or emotional nature? alaska also asks: since completing your postgraduate training, have you ever been physically or mentally unable to practice medicine for a period of 60 days or longer? the most invasive mental health question we found on any application is: have you ever been diagnosed with, treated for, or do you currently have: followed by a list of 14 mental health conditions including depression, seasonal affective disorder, and any condition requiring chronic medical or behavioral treatment (figure 1). one hospitalist reports: in residency, i had to do a rotation in alaska. the application asked if i had ever been on psychotropic medications or in counseling. i had taken zoloft 12.5 mg for 90 days due to anticipatory anxiety about starting intern year. fortunately, my fears weren’t realized, so i stopped the medication when the prescription expired. i had also gone to counseling in my fourth year of medical school for a separate relationship issue. so, i answered both questions affirmatively. this resulted in my having to defend myself to a panel of people on the alaska medical board over the phone. they granted my license, but it was a humiliating experience and definitely created barriers to my seeking care moving forward-both because i have not wanted to be in a position to have to answer those types of questions affirmatively, and due to financial barriers because i will not use insurance to defray costs of counseling since that may be discoverable. what a horrible culture of shame those questions create! delaware begins with the same question as alabama: within the past 5 years, have you ever raised the issue of consumption of drugs or alcohol or the issue of a mental, emotional, nervous, or behavioral disorder or condition as a defense, mitigation, or explanation for your actions in the course of any administrative or judicial proceedings or investigation; any inquiry or other proceeding; or any proposed termination by an educational institution; employer; governmental agency; professional organization; or licensing authority? two follow-up questions include: are such current conditions or impairments reduced or ameliorated because of ongoing treatment (with or without medication) or participation in a monitoring program or because of the field of practice, the setting, or the manner in which you have chosen to practice medicine? do you have a mental or physical disability that limits your ability to practice medicine in a fully competent and professional manner with safety to patients? if yes, are you willing to accept a conditional or limited [page 114] [qualitative research in medicine & healthcare 2019; 3:8649] article no nco mm er cia l u se on ly license to practice medicine if it is possible to accommodate such disability? final question: do you agree to submit to an examination at your own expense if the executive director of the board of medical licensure and discipline deems it necessary to determine whether your physical and/or mental impairment presents a significant risk to the health or safety of patients or otherwise causes you not to be fully qualified to practice medicine in a competent and professional manner with safety to patients without limitations or accommodations? if no, submit a signed, notarized statement fully explaining your answer. delaware’s application makes an anticipatory request that physicians waive their confidentiality/hipaa rights and submit to an impairment exam at their own expense before the board reviews the application or meets with the physician. florida has 6 questions. three relate to substance use and one to physical impairment. two mental health questions are: in the last 5 years, have you been admitted or referred to a hospital, facility or impaired practitioner program for the treatment of a diagnosed mental disorder or impairment? during the past 5 years, have you been treated for or had a recurrence of a diagnosed mental health disorder that has impaired your ability [qualitative research in medicine & healthcare 2019; 3:8649] [page 115] special issue on physician mental health figure 1. alaska image (from public document alaska medical board licensing application 2019; https://www.commerce. alaska.gov/). no nco mm er cia l u se on ly to practice medicine? neither of these questions focus on current impairment. an affirmative answer to any question requires: a selfexplanation providing accurate details that include names of all physicians, therapists, counselors, hospitals, institutions, and/or clinics where you received treatment and dates of treatment. a report directed to the florida board of medicine from each treatment provider about your treatment, medications, and dates of treatment. if applicable, include diagnostic and statistical manual of mental disorders (dsm) dsmiii r/dsm iv/dsm iv-tr axis i and ii diagnosis(es) code(s), admission and discharge summary(s). two florida physicians report: when i applied for my florida license it was delayed by months. i was required to have a psych evaluation by an approved doctor due my history of depression which was treated and well managed. it fell under the impaired physician program and definitely was stigmatizing. to this day i don’t answer those questions honestly anymore and am hesitant to seek treatment as needed. after the unexpected death of a patient, i sought counseling. by a stroke of (bad) luck, i picked the only one in town in charge of impaired physician monitoring. he told the board (though stable) i should be monitored. i had to defend myself in front of the florida board. they laughed in my face and then posted in the local newspapers that i was sentenced to 5 years of monitoring. i had mandatory wednesday group therapy. though i was an exemplary physician, my employers had to be told why i was unavailable for call every wednesday. each time i (re)credential with hospitals, i must explain the whole thing again. hipaa for me does not exist. i have never missed a single day of work for mental health. massachusetts previously ranked an a with one straightforward question: do you have a medical or physical condition that currently impairs your ability to practice medicine? now massachusetts asks 2 additional impairment-related questions related to substance use including: have you ever refused to submit to a test to determine whether you had consumed and/or were under the influence of chemical substances? this section is preceded by a convoluted definition of currently meaning within the past 2 years (similar to alabama). following these questions is a large box titled ‘important note regarding physician wellness’ with 4 paragraphs promoting the massachusetts medical society’s physician health services (phs) culminating with a statement that their state’s physician health program is designed to assist physicians with the following: alcohol misuse; substance use disorder; behavioral or mental or physical health issues that currently impair the ability to practice medicine; stress including administrative burdens; financial pressures; and work-family balance issues. recruiting physicians with occupational stress into the state’s php on a medical licensing application is misplaced and predatory given the adverse impact of these health programs on the careers of physicians detailed in this report. mississippi application forces physicians to waive all confidentiality and hipaa rights plus consent to a mental exam at applicant’s expense. similar to delaware, mississippi has this additional paragraph: by submission of an application for licensing to the board, an applicant shall be deemed to have given his or her consent to submit to physical or mental examinations if, when and in the manner so directed by the board and to waive all objections as to the admissibility or disclosure of findings, reports or recommendations pertaining thereto on the grounds of privileges provided by law. the expense of such examination shall be borne by the applicant. mississippi also asks: have you ever been diagnosed as having, or have you ever been treated for, pedophilia, exhibitionism, or voyeurism, bipolar disorder, sexual disorder, schizophrenia, paranoia or other psychiatric disorder? given the forced breach of confidentiality, forced consent to exam, and have-you-ever been diagnosed with mental health conditions such as bipolar disorder unlinked to current impairment, mississippi is graded f rhode island has no current impairment questions; however, there are 2 questions that may preclude a physician who suffered retaliation for a mental health condition during training from receiving a medical license. the first: during any professional/medical education were you ever dismissed, suspended, restricted, put on probation, or otherwise acted against or did you take a leave of absence for medical reasons? the second: during any post graduate training, were you ever dismissed, suspended, restricted, put on probation, or otherwise acted against or did you take a leave of absence for medical reasons? having to defend a leave of absence for medical reasons that may have happened decades ago re-victimizes physicians who have experienced punishment/retaliation for occupationally induced mental health conditions. one anesthesiologist explains: when i became overwhelmed with abuse i was facing in residency, i begged my program director with tears running down my face for emergency mental health care. i spent the next few days isolated, confused, exhausted on my couch. i saw a counselor. i started an antidepressant for the first time in my 30 years of existence. by the weekend i felt refreshed with a glimmer of hope. when my program asked to meet with me on [page 116] [qualitative research in medicine & healthcare 2019; 3:8649] article no nco mm er cia l u se on ly monday, i was sure it was to see if i was okay, to ensure i had no thoughts of self-harm or suicide. i was wrong. the meeting was to let me know i was placed on 6 months’ probation for being unprofessional. i was flabbergasted, my mouth literally fell open. i couldn’t believe i was sitting in front of the people i trusted with my education and they were able to look at me in my greatest time of need and anguish knowing i was now in counseling and on medication and respond only with punishment. washingtonhas personal data questions that cover mental health, substance use, and criminal/predatory behavior with a list of impairing medical conditions that match the vermont application (figure 2). though washington asks about medical conditions linked to current impairment and rightfully screens physicians for predatory/criminal behavior, we find the threatening language in the black box to be concerning including forced breach of an applicant’s confidentiality and privacy. discussion the federation of state medical boards (fsmb) defines impairment as a physical, mental, or substance-related disorder that interferes with a physician’s ability to undertake professional activities competently and safely.6 the fsmb focus is the individual impaired physician. but what causes the impairment? has the impairment been fixed? one psychiatrist explains: taking medication for attention deficit hyperactivity disorder (adhd) is analogous to wearing [qualitative research in medicine & healthcare 2019; 3:8649] [page 117] special issue on physician mental health figure 2. washington image (from public document washington medical commission licensing application 2019; https://wmc. wa.gov/). no nco mm er cia l u se on ly glasses for my nearsightedness. my state licensing question asks: do you have a condition that could impact your abilities? as long as i am wearing my glasses i can see. as long as i am taking my adhd medicine i can keep fairly focused. what business is it of theirs? normally i feel guilty for lying about the slightest thing. i was counseled behind closed doors by a faculty who knew of my struggles with adhd to simply put no on the form and leave it at that. this proved to be good advice. i was raised to be extremely honest about everything. when it comes to completing these questions for licensing i believe i am being honest because i was instructed by my respected faculty member to look at the questions in this light: are you impaired by your condition? no. then the answer on the application is no. many states treat illness as impairment. according to the fsmb: some regulatory agencies equate illness (i.e., addiction or depression) as synonymous with impairment. physician illness and impairment exist on a continuum with illness typically predating impairment, often by many years. this is a critically important distinction. illness is the existence of a disease. impairment is a functional classification and implies the inability of the person affected by disease to perform specific activities.6 fsmb believes illness precedes impairment and that physicians may at any point fall into the continuum of inability to practice medicine competently and safely. medical board intervention is always directed at the physician, not the system. but what if the system causes physician impairment? case in point: resident physicians are legally forced to work 28-hour shifts (or longer due to unenforced caps).7 working just 17 hours is equivalent to the cognitive and psychomotor impairment of a 0.05% blood alcohol content (illegal to drive in utah and most western european countries). working beyond 24 hours is equivalent to a 0.10% blood alcohol content (exceeding the 0.08% legal limit to drive in 49 states and district of columbia). impairment escalates along a continuum and is noted even at 10 hours.8 sleep-deprivation-related cognitive and psychomotor impairment leads to medical mistakes and fatal car accidents after long hospital shifts.7 professional boards are tasked with protecting the public. to prevent pilot fatigue resulting in impairmentrelated plane crashes, the national transportation safety board (ntsb) limits maximum flight time to 9 hours during the day or 8 hours at night. why force physicians to work 3 times that amount? as guardians of public safety, medical boards (like transportation boards) must address hazardous work conditions that currently impair more than 130,000 us resident physicians.9 given our physician shortage, boards should protect physicians from sleep-deprivation-related seizures, hallucinations, psychosis and death inside our hospitals. we cannot afford to lose one more doctor. beyond sleep deprivation, physicians are injured by chronic violations of their human rights in hospitals due to overwork (80-100 hours work week is equivalent to 2 to 3 full-time jobs), food/water deprivation, bullying, harassment, discrimination, and punishment when sick (including lack of confidential mental health care).5 late-stage effects of these violations are substance abuse and mental illness. rather than address the systemic causes of physician impairment, medical boards too often sanction physicians thereby re-victimizing victims. some board questions seem more voyeuristic and predatory than helpful, exploiting vulnerable physicians for profit. fine-print warnings threaten hefty fines for intentional or inadvertent non-disclosure leading naively honest physicians to answer ada-noncompliant questions by sharing intimate confidential information when they present no danger to patients. sanctioned physicians risk public disclosure of their mental health conditions. one affirmative answer creates a cascade effect in which non-impaired physicians are further traumatized and may be mandated to multi-year addiction recovery programs (even though they have never used drugs). when one state denies or limits licensure, others mirror the action. one positive response to a mental health question may follow an applicant for life. conclusions medical boards do undermine physician mental health by breaching physician confidentiality and privacy. qualified, competent applicants who disclose mental health conditions do suffer discrimination by medical boards. many state medical boards ask questions about physical and mental health in violation of title ii regulations of the americans with disabilities act of 1990, nearly 30 years after enactment of the law. in their search for criminal behavior among physicians, medical boards must not become criminal in their own behavior. by breaking federal law, physicians’ civil rights, and the ama code of ethics, boards have weaponized mental health diagnoses against physicians. recommendations for all medical boards: i) remove mental health questions from medical licensing applications. replace with current functional impairment questions such as: do you currently have a condition that impairs your ability to practice medicine safely? comply with federal law by following best practices of grade a states. move criminal/predatory conduct such as voyeurism queries to the criminal section; ii) address impairment from hazardous working conditions.rather than focus on individual victims, engage in high-yield activities that resolve hazardous conditions impairing physicians en masse. to truly protect patients, align with all other industries invested in public safety that have legislated and enforced maximum 16-hour shifts, 60-hour work weeks, with minimum 30-minute breaks every 8 [page 118] [qualitative research in medicine & healthcare 2019; 3:8649] article no nco mm er cia l u se on ly hours; iii) encourage non-punitive 100% confidential mental health care. physicians require safe, accessible mental health care to be well-adjusted human beings. most physicians enter medicine as humanitarians with noble intentions. help them be well. after all, how can physicians give patients the care they’ve never received? one surgeon summarizes: physicians are treated as criminals and tracked more closely than level 3 sex offenders. answering all these questions on applications, the subtle, unspoken lesson is you had better be squeaky clean, mentally, morally and physically! if you step off the shining path, bad things will occur. i have known 7 male physicians who died by suicide. most with a happy exterior. why? they cannot confide in colleagues for fear that their colleagues will turn them in to hospitals and boards and there goes their privileges and livelihood. they cannot confide in their spouses because during rough patches mentally, their marriages are already in trouble. if they share psychological problems, they probably fear that the wife may use this as ammunition in any future divorce. so, they keep on smiling right up to the hour they die. even until their last breath, physicians retain their work ethic. some doctors are completing chart notes, returning lab results, and checking in on hospitalized patients in the hours before their suicides.5 by injuring physicians, we are not protecting the public. let’s end the physician mental health witch hunt. references 1. vogel l. has suicide become an occupational hazard of practicing medicine? cmaj 2018;190:e752-3. 2. pereira-lima k. residency program factors associated with depressive symptoms in internal medicine interns: a prospective cohort study. acad med 2019;94:869-75. 3. anderson p. doctors’ suicide rate highest of any profession. american psychiatric association annual meeting 2018. available from: https://www.webmd.com/mentalhealth/news/20180508/doctors-suicide-rate-highest-of-anyprofession#1 4. wible p. do physician health programs increase physician suicides? medscape 2015. available from: https://www. medscape.com/viewarticle/850023 5. wible p. human rights violations in medicine: a-to-z action guide. pamela wible, m.d. 2019. 6. federation of state medical boards. policy on physician impairment. available from: https://www.fsmb.org/siteassets/ advocacy/policies/physician-impairment.pdf 7. wible p. sleep-deprived doctors disclose hospital horrors. pamela wible, m.d. 2017. available from: https://www.i dealmedicalcare.org/sleep-deprived-docs-disclose-hospitalhorrors/ 8. dawson d, reid k. fatigue, alcohol and performance impairment. nature. 1997;388:235. 9. association of american medical colleges. physician speciality data report. [internet]. acgme residents and fellows by sex and specialty, 2017. available from: https://www.aamc.org/data-reports/workforce/interactivedata/acgme-residents-and-fellows-sex-and-specialty2017?fbclid=iwar21ckjgb8uedw11y3l3lw9b5qv0yszr wxlvfguaba6tgo53st4_d3sljxo [qualitative research in medicine & healthcare 2019; 3:8649] [page 119] special issue on physician mental health no nco mm er cia l u se on ly layout 1 [qualitative research in medicine & healthcare 2020; 4:8642] [page 1] introduction pete’s advanced stages of parkinson’s disease caused incredible difficulties in his communicative efforts. he had lost much of his hearing, his attempts to control his constant tremors demanded most of his energy and attention, and his voice was muffled and quiet. his body also suffered from multiple other diagnoses that challenged his overall wellbeing, but those were never explained to me and i did not feel the need to ask. he lived alone in a room at a full-time care facility, receiving daily hospice visits from his nurse as part of his care plan. otherwise, he spent his time alone. the edges of his room, which was kept in orderly fashion to diminish the risk of falls, were adorned with artifacts from what appeared to be a full and vibrant life (e.g., photographs featuring seven decades worth of smiles and relationships, family pottery passed down through generations, greeting cards, antique clocks, and books with worn and dusty covers) and presented a striking contrast to his crisply tucked bed linens, empty moss green burlap couch, and dining room table with one wooden chair. his sister requested hospice volunteer visits, hoping that company would alleviate his depression and her own guilt for not being able to take care of him on a regular basis. after my first discouraging visit with him, she called to suggest that his love of country music might be my best bet in forming any sort of connection. a simple set of noise-cancelling earbuds and his tunes that’s all it took. our visits and his daily life in my absence were transformed. pete was enlivened by the sounds of reba, dolly, and johnny cash. joy emanated from his body in those moments; it was miraculous, really. previously hesitant to interact because of his physical limitations and insecurities therein, he found the rhythm he needed to dance in his chair, thumbs effortlessly slipped into his belt loops, and southern-twang shoulder shrugs, as he often exclaimed: ‘i’m dancing now!’ his antraversing temporalities at end-of-life: mobilizing narratives with imagination and aesthetic sensibilities stephanie m. pangborn,1 lynn m. harter2 1department of communication, hope college, holland, mi; 2school of communication studies, ohio university, athens, oh, usa abstract we bring into focus the role of the imagination and aesthetics in narrative sensemaking, particularly as it informs end-of-life care, in this engaged and ethnographically-inspired research project. to begin, we detail a brief history of hospice and situate our work amid literature on storytelling and health communication. we then introduce readers to grace hospice’s creatively-inspired experiences (cies), opportunities for patients and their family members to engage in artful interactions, which was integrated within volunteer services as means of offering care beyond basic measures for comfort and companionship. motivated by curiosities about how storytelling arises and functions in contexts often characterized as the end, this project illustrates the capacity of storytelling to traverse the temporalities of life stories while meaningfully responding to the challenges of relational connection and narrative continuation in hospice contexts. specifically, findings suggest that narrative imagination and aesthetic sensibilities act as mobilizing resources, enabling stories to affect relationships by transcending chasms, nurturing mindfulness and presence, and cultivating legacies and tomorrows. correspondence: stephanie m. pangborn, department of communication, hope college, martha miller center 122, 257 columbia avenue, holland, mi 49423, usa. e-mail: pangborn@hope.edu conflict of interest: the authors declare no potential conflict of interests. key words: storytelling; narrative imagination; aesthetics; temporality; hospice. to the hospice organization that trusted us to contribute to the holistic care of their patients, thank you beyond measure for enabling these experiences to be a part of our professional journeys. to the patients and families who shared their lives with us, we offer our heartfelt gratitude – your resiliency and legacies continue to inspire our work. conference presentation: a former version of this manuscript was accepted for presentation at the 2015 national communication association conference in las vegas, nv. received for publication: 26 october 2019. accepted for publication: 12 january 2020. this work is licensed under a creative commons attribution noncommercial 4.0 license (cc by-nc 4.0). ©copyright: the author(s), 2020 licensee pagepress, italy qualitative research in medicine & healthcare 2020; 4:1-12 doi:10.4081/qrmh.2020.8642 qualitative research in medicine & healthcare 2020; volume 4:1-12 no nco mm er cia l u se on ly imated spirit demonstrated that he felt known, seen, and worthy of relationship, even though the corporeal effects of this disease tempted him to believe otherwise. (first author fieldnotes). there are two basic essential needs of dying patients: i) to allow for hope … not the same hope for cure treatment or prolongation of life and ii) a reassurance that they will not be deserted.1 rather than viewing hope as an attitude or an outcome, mattingly2 positioned hope as a relational practice that most centrally involves the practice of creating, or trying to create, lives worth living even in the midst of suffering, even with no happy ending in sight. in pete’s case, it was the formation of relationship rooted in a mutual appreciation for music that instilled something worth living for in a life otherwise perceived to be drastically diminished, one that had been given an estimated end date. although southern tunes had no chance of curing the diseases of progressive decline continuously altering his body and abilities, his sister did claim that music saved the life he had left to live. his aesthetic spirit and vulnerability to imagine otherwise for himself enabled vivid performances of a life that still lingers with force in our minds and motivates our passionate pursuit of creative approaches to care. narratives are symbolic resources that temporally and spatially situate characters and motives, scenes, events, and action sequences through the process of emplotment.3 in the mundane and extraordinary moments, humans draw on and craft stories to make sense of life. although communication scholars significantly influenced the narrative turn in health-related practice,4 scholars have yet to adequately attend to the poetic potential of narrative sensemaking and the conditions that cultivate the sharing and performing of lives and their stories. the use of a narrative lens for exploring the ways in which human beings understand and operate within complex social environments has grown exponentially, noted andrews;5 yet, [m]ost of this work has not dwelled upon the machinations of human imagination in the production and interpretation of narrative. and here, we intervene. rather than gravitating toward spoken or written texts as much of communication scholarship does, we actively accept sharf’s6 urging that scholars pursue possibilities to be realized by communicative interactions that rely on multisensory forms. we join this conversation and illustrate the merits of an aesthetic approach to storytelling that includes but reaches beyond linguistic signifying practices. we bring into focus the role of the imagination in narrative sensemaking, particularly as it informs endof-life care. to begin, we offer a brief account of hospice care and situate our work amid literature on storytelling and health communication. we then introduce readers to grace hospice and its creatively-inspired experiences (cie), created and directed by the first author. the coupling of narrative theory and the aesthetic practices of cie is instructive in illustrating the salience of temporality and creativity in narrative-based interventions in medicine and healthcare. the narrative shape of hospice care hospice care envision[s] a world where everyone facing serious illness, death, and grief will experience the best that humankind can offer.7 hospice services involve: a coordinated program providing palliative care to terminally ill patients and supportive services to patients, their families, and significant others 24 hours a day, seven days a week. comprehensive/case managed services based on physical, social, spiritual, and emotional needs are provided during the last stages of illness, during the dying process, and during bereavement by a medically directed interdisciplinary team consisting of patients/families, health care professionals and volunteers. professional management and continuity of care is maintained across multiple settings including homes, hospitals, long term care and residential settings. 8 the american hospice foundation9 further explains that the patient is at the center of this interdisciplinary team approach to enhancing quality of life: you tell the team about your story, your hopes your values. you decide what kind of care is not enough and what is too much. your hospice team members use their experience and skills to carry out your wishes. those whose lives and families have been cared for within the hospice approach, think of it as caregiving in the finest tradition: care that is both competent and compassionate.8 to truly understand hospice, and its value, requires that we accept the reality of death, a reality that we have been trained to ignore because of the dis-ease we feel in communicating about our mortality10 and the discomfort often experienced by the chasms that lifelimiting illness imposes in relationships.11 western culture’s delusional misunderstanding that medicine is an infallible science fuels social hesitance to accept hospice care as a legitimate and necessary approach to caring for the holistic pain experienced by dying persons and those who love them. in fact, choosing hospice is often regarded as frightening, socially unacceptable, or as giving up, encouraging people instead to do everything to avoid death without serious consideration of the consequences therein.10 in 1967, after nearly two decades of witnessing patients endure these burdensome consequences and learning from the stories they shared, cicely saunders founded the first hospice, st. christopher’s, in london; the roots of its inception characterize hospice as a narratively-inspired form of care. the hospice movement was (and arguably, still is) considered to be a revolutionary approach to care because it challenges [page 2] [qualitative research in medicine & healthcare 2020; 4:8642] article no nco mm er cia l u se on ly the mind-body dualism of modern medical practice and prioritizes people and their stories.12 storytelling in health-related contexts narrative is at once a phenomenon worthy of inquiry and a theoretical perspective used to explore social phenomenon.4 narrative theory positions storytelling as a legitimate form of reasoning: a knowledge producing resource enabling individuals to make sense of disruption and envision otherwise.3 we adopt a broad standpoint that encompasses personal stories, cultural and institutional scripts, and the storytelling process. we understand narratives as enactments of events, told from a particular point of view. we also conceive of storytelling as a performative act that shapes and is shaped by the discursive and material surround. storytelling is a symbolic resource used by humans to make sense of suffering and foster well-being. frank13 compared a serious diagnosis to a loss of destination and map and characterized patients as wounded storytellers. narratives account for misfortune, ascertain responsibility, and infer warrants for decisions made and future directions.14 while reckoning with illness, treatment, and what remains in the aftermath, patients and families also construct life and health legacies, revealing or sequestering storylines in effort to fulfill desired purposes.15,16 in arthur frank’s17 letting stories breathe, he explained that, [s]tories animate human life; that is their work. stories work with people, for people, and always stories work on people, affecting what people are able to see as real, as possible, and as worth doing or best avoided. we are reminded here that our stories are consequential – informing our sense-making processes and giving form to our ongoing performances of self and relationship. our stories animate … instigate … mobilize, … remind us that we have to live with complicated truths, and offer a plot that makes some particular future not only plausible but also compelling. in acknowledgement of their capacity to move us in all of these ways, we have much to gain in further exploration of the narrative resources that cultivate occasions for our stories. narrative resources a central feature of storytelling is its ability to deal simultaneously with continuity and disruption. crafting and consuming stories, especially in response to disruption and the relational disconnection that ensues, requires people to exercise their imagination. coupling narrative sensibilities with the imagination emphasizes the importance of temporality.5 a fundamental part of the narrating process at end-of-life is the and then – the constructing of a sequence of elements to understand the complexities of current experiences18 as well as resisting temptation to finalize lives and limit legacies.19 acknowledging temporality encourages the consequential linking of events, demonstrating the human capacity to make sense of present conditions while being both anchored by history and transported into the future. narrators who exercise their imagination are artful in piecing together fragments of their life stories. in this way, storytelling involves what andrews described as time travelling, or movement between the past and present and the past again as they revisit memories in light of changing circumstances and envision otherwise for their futures. however, in the hospice context, when a patient has been given a terminal diagnosis and chosen to forgo curative treatments, the and then gets complicated for individuals and relationships. people’s lives are defined by what is both included and overlooked in the telling of stories, a process that is nonetheless socially conditioned. as noted by andrews5 imagination, like knowledge, does not come out of nothingness, but is a creative synthesis which emanates from a particular location. envisioning otherwise is a meaningmaking process fraught with difficulty. the practice of medicine is intricately linked to deeply entrenched cultural assumptions and normative conceptions. cultural scripts (e.g., technology is progress) institutionalize patterns of care and normative expectations (e.g., the eradication of disease).20 forgoing curative treatments is a difficult choice, as it is often perceived as losing hope and giving up. too often, these characterizations lead individuals to submit to narrative foreclosure, an inability to see one’s experience as having any significance beyond itself.19 fostering storytelling through creative programming is a practice full of possibility. yet, communication scholars generally gravitate toward spoken or written texts. sharf6 urged scholars to be careful about over-privileging the verbal such that other important sensory contributions are not recognized and credited. as she suggested, there is much to be discovered in the potential of creative forms of narrative, as they might open dialogue in ways that better reflect the unique experiences of suffering individuals. in light of the relational and communicative challenges patients and families face in hospice, the pursuit of new narrative resources that capitalize on the aesthetic, embodied nature of experience is one way of providing compassionate, humanizing care. through the sharing and performance of the continued narrative new selves emerge, allowing relationships to move beyond the limiting tropes of illness.15 as individuals whose lives were profoundly affected by hospice experiences, we (both authors) recognize the capacity of stories and an aesthetic spirit in moving beyond the difficulties surrounding end-of-life care. the first author’s grandfather served as a hospice chaplain and died as a hospice patient. the second author’s mother graduated from hospice care when her health stabilized and her father’s life ended in hospice care. we [qualitative research in medicine & healthcare 2020; 4:8642] [page 3] article no nco mm er cia l u se on ly both acknowledge that while hospice workers delivered incredible care to our families, we deeply longed for something more. this personal desire, inspired by our narrative, aesthetic, and pragmatic sensibilities, led us to explore the integration of multi-sensory storytelling experiences in hospice. certainly, we are not the first to acknowledge that interventions beyond the scope of traditional western medicine have the potential to affect patients’ holistic well-being in profound ways. complementary and alternative medicines (cam) – professionally-directed integration of experiences such as art, music, massage, meditation, aromatherapy, and acupressure, among others – are designed to address the mind, body, and spirit connection in healing and have been found to reduce patients’ symptoms of pain, depression, anxiety, and fatigue. 21 while the goal of cam is to enhance quality of life and comfort, thereby aligning perfectly with the hospice philosophy, the medicare hospice benefit does not require it of hospice interdisciplinary teams. our family hospice experiences, as is the case for individuals enrolled in most hospice organizations in the united states, did not include such therapies for our loved ones. in fact, more than 70% of hospice organizations do not employ a professional cam therapist; of those that do, only 53% have an art therapist on staff and only 22% have a music therapist.21 a lack of paid interdisciplinary team members primarily dedicated to enabling patients and families to experience the socioemotional benefits of narrative occasions conditioned by art and music should not keep people from engaging in creatively-inspired communication and experiencing the relational healing therein. motivated by frank,17 we focus attention on what stories do for people, exploring how stories breathe life into living. specifically, we focus on the question: how do multisensory stories, and the creative conditions in which they arise, function in the hospice context? in answering this question, we extend health narrative scholarship by emphasizing the practical value of narrative theory and an imaginative, aesthetic orientation as resource for meaningful storying occasions (i.e., telling, witnessing, sharing, and performing). research design cie were comprised of activities that relied on aesthetic engagement (e.g., video life legacies, painting, drawing, photography, music, and poems) to foster conditions for performances of self and narrative imagination within relationships. these additions to grace hospice’s approach to caring for the holistic needs of individuals were theoretically-grounded opportunities to enrich hospice patients’ and their families’ experiences as they made sense of what can be a very difficult experience. cie were explained to patients and family members during their initial hospice enrollment meeting. oftentimes, it took more time for patients and families to embrace these opportunities and they usually sought them out in conversation with their nurse, social worker, or volunteer coordinator at a later date. upon their expressed desire to participate, the first author and volunteer coordinator met with the participants to identify activities of interest and selected a volunteer well-suited for the particularities of the given context. worth noting here is that all cie volunteers were required to attend a hospice volunteer training and interactive seminar led by the first author in which the purpose and theoretical foundations of cie were described in detail. at the outset of the project, too, during one of their regularly scheduled meetings all members of the hospice interdisciplinary team were provided an in-depth explanation of cie, its purpose, and the theoretical foundations upon which it was designed. specifically, in discussion with care providers, the first author emphasized the important role they each could play in efforts to enhance holistic care by identifying patients and families who might benefit from cie engagement as well as relying upon these communicative sensibilities as they sought to build meaningful relationships with their patients. only one month following cie implementation, twelve care providers (who verbally committed to intentionally prioritize cie as a meaningful part of holistic care) and five volunteers dedicated solely to cie (each kept an average of three patients with whom they regularly visited, assignments obviously shifting with the nature of hospice in that they would meet with new patients after others with whom they had visited were no longer alive) were engaged as participants. of the patients who chose to engage in cie, some had family members involved, while others did not. throughout the life course of this project, participation in cie grew with encouraging trajectory. keeping track of the number of patients, family members, volunteers, and care providers engaged in cie became a trivial task as we witnessed participants in the project become advocates of these creative narrative resources, inspiring countless others to rely upon similar sensibilities in their work and relationships. exiting the field upon completion of an ethnographic project is a challenging task, especially when the experience emotionally enmeshes you in the lives of participants and reveals the necessity of your engaged work. the difficulties we experienced in closing the door to this specific journey were greatly alleviated by the knowledge that we offered something of value to the organization and the people it serves. grace continues to provide cie and uses the training materials created for this project to educate volunteers and care providers about the value of creative narrative resources in the hospice setting. while we do not anticipate pursuing similar applied research projects with other hospice organizations, we do hope that grace’s capacity to infuse their organizational practices with these narrative sensibilities, even while con[page 4] [qualitative research in medicine & healthcare 2020; 4:8642] article no nco mm er cia l u se on ly tinuing to face the financial burdens inhibiting them from having cam therapists on staff, will inspire other hospice teams to cultivate creatively-inspired communicative experiences of their own. as this project and numerous others have taught us, creative approaches to communicating in healthcare settings have tremendous capacity to enhance well-being and its practice need not be reserved for trained professionals. setting the first author had previously worked at grace health system (note: an organizational pseudonym was chosen to maintain privacy of participants) – a large community-owned, not-for-profit health system with a full range of inpatient and outpatient services, including a hospice home. she relied upon her relationships with the ceo, staff members and care providers to secure access and approval for the creation of cie as aligned with the organization’s expressed desire to enhance its patientand family-centered focus. specifically, although they lacked the financial resources to hire cam professionals to work integrated these experiences from therapeutic perspectives, as many hospice organizations do, grace leadership and both authors were optimistic about the potential to be realized by training members of the volunteer force to draw upon narrative and aesthetic sensibilities in their interactions with patients and families. cie were explicitly described as non-therapeutic, but still yet, intentional efforts to cultivate conditions for the well-being and experiences of patients and families to be enriched; they simply and profoundly infused the care setting with creative approaches to communication. after obtaining irb approval, the first author, with the guidance of the second author who served as a mentor situated outside of the site of study, embarked upon a fifteen-month ethnographically-inspired journey aimed toward crystallizing various qualitative methods (e.g., participant observation, in-depth interviews, and creative analytic practices)22 in an effort to offer a rich, nuanced understanding of how storytelling functions in cie. discourse collection as a participant researcher, the first author immersed herself within the setting in various ways: cie implementation, recruitment and training of volunteers, and observation of and participation in the program. further, she joined in weekly interdisciplinary team (idt) meetings in which care teams discussed the comprehensive care plans of each patient and identified those who might most benefit from cie participation. in the midst of ethnographic observation, the first author facilitated interviews with 3 patients, 4 family members, 5 volunteers, and 5 care providers. these interviews were an essential component of the research process, as they enabled participants to retrospectively make sense of their experiences.23 each one who chose to participate provided verbal consent for observation and written consent for interviews. in addition, each participant was given the option to have his/her name used in publications or to choose a pseudonym. the first author used a semistructured approach in facilitating the 18 interviews (17 participants were interviewed; one participant engaged in three separate interviews and two-family members requested to be interviewed together), inviting deep description and detail from interviewees.24 these conversations ranged from 30 to 90 minutes. further, the artistic renderings of experience that emerged from cie activities served as prompts for insightful conversations about the role of creative narrative forms. in sum, 235 hours were spent involved in program development, implementation, observation, and interviews. the collected discourses included notes from meetings, patient/family visits, volunteer trainings, conversations, and interviews. these discourses resulted in more than 500 pages of fieldnotes, transcripts, and reflections and were supplemented with numerous multisensory artifacts created during cie interactions. discourse analysis from the time the first author began fieldwork, she engaged in a flexible approach to constant comparative sensemaking to identify emergent ideas worthy of further development.25 importantly, she engaged the discourse with narrative sensibilities. following the lead of reissman,26 she paid attention to stories told in interviews and performed in interaction, documenting her sensemaking processes in the form of reflections, theoretical memos, and conceptual maps. as she analyzed discourse, she was reminded of boje’s27 argument that narratives are not always structured linear accounts. stories often unfolded, during cie activities and in interviews, as fragments not nearly as tidy as often portrayed in academic theorizing. we resisted imposing counterfeit coherence27 on people’s accounts while still highlighting concerns of interest to narrative scholars: temporality, disruption, plot, characters and their relations, and settings. the second author’s outside vantage point provided an important perception check during data analysis. we discussed and debated various interpretations of what was evidenced in the discourse until reaching a consensus on the most viable, defensible, and interesting explanations. here, we present an artistic account that intermingles discourses and performances observed and experienced throughout the study with theoretical sensemaking about narratives and the social experiences of end-of-life. in doing so, our desire is to make rich contributions to com [qualitative research in medicine & healthcare 2020; 4:8642] [page 5] article no nco mm er cia l u se on ly munication theory and the practice of caring for individuals in health contexts as we demonstrate what it is that stories do: transcend relational chasms, nurture mindfulness and presence, and cultivate meaning-filled tomorrows. the vignettes we offer are firsthand accounts with individuals whose lives enlarged our capacity to envision humanizing potentials for end-of-life care. alone, each one speaks volumes; together, they paint a vivid picture of possibility. mobilizing forces: narrative imagination and aesthetic sensibilities in a very real way, the act of travel enables people to experience anew. it offers a freedom to explore, to see, to sense. it presents fresh perspectives, invites inspirations, and cultivates moments turned into memories. such was the case for leon, a hospice patient living with lung cancer with a remaining life expectancy of only a few months. he and his wife, eileen, living at the time with advanced alzheimer’s disease, and their daughter, patty, participated in the cie and engaged in conversations often prompted by family photographs and hymns the couple had recorded as newlyweds some fifty years prior. below, we offer an extended vignette from the first author’s fieldnotes to demonstrate the value of time travelling, a central concept in andrews’25 explanation of narrative imagination, to illustrate how storytelling allows participants to move between the past, present, and future. the photographs leon shared were vivid representations of his love and need for travel. in fact, he recounted his adventures with eileen as being some of his fondest memories, as the two had stepped foot in each of the united states, with the lone exception of hawaii. leon emphasized the importance of this effort with a statement that continues to affect me, it’s one thing to travel through some place and quite another to dwell in a moment on new terrain in appreciation of its beautiful value in your life. coincidentally, only a few days prior, my aunt asked me to join her on a trip to hawaii. due to my fond connection to leon and realistic fear that he would die while i was away, i hesitated to accept her invitation. leon urged me to go, to soak up the experience, to engrain its beauty in my mind. as i ran along the shores of waikiki, toes in the water and sand, i thought about leon. i dreamt of my grandfather. i revisited moments in my mind with many of my grace patients and families. each had left vivid markers on my life. leon was right. something magical happens when you allow yourself to travel to spaces and places – real and possible, past and future. travelling introduces vantage points that reveal new potential to your present reality, your understanding of the past, and your tightly gripped hopes for tomorrows. my run ceased that morning when the bottom of my bare foot made painful contact with a porous, weathered white rock with rough edges on the ocean floor. i picked it up, imagining the journey it had endured to achieve this condition – a condition with striking similarity to the storied accounts many hospice patients and family members had described to me. quite frankly, the rock was a visual representation of things i had felt but never been able to describe, too. i kept this little piece of hawaii to share with leon. upon returning home, leon’s condition had declined. he could not get out of bed and his breathing was heavily labored. there wasn’t much talking during our time together that day, but he managed to ask: ‘how was the trip?’ i smiled and showed him the rock. as i vividly described the gorgeous scenes i had encountered, he closed his eyes and handed the rock back to me. he said ‘put it on my foot … let me feel it, like i’m there.’ i could see that he was no longer confined to his bed but immersed in another place and time. i took his socks off and carefully rolled the rock along his toes and his heels. his eyes still closed and his smile even wider, he said: ‘there, now my feet have touched hawaii.’ (first author fieldnotes). although tethered to a physical reality marked by diagnoses, medications, and medical equipment, an imaginative stance toward circumstance, ourselves, and one another, enables us to inhabit another dimension. the marrying of narrative sensibilities and our inherently human drive to imagine leads to what bruner3 referred to as trafficking in human possibilities rather than settled certainties. during the cie experiences, hospice staff, volunteers, patients, and families transcended the place restricted by bodily decline and entered a space of enlarged potential for humanity to come into its fullest bloom. cie taught us that even as individuals must traverse the rugged terrain of life, they also have the opportunity to explore what andrews5 described as the creative tension between temporality and possibility and recognize life as threaded by ongoing change and perpetual becoming. specifically, cie served as a context in which to explore the critical function of imagination and narrative understanding. in these settings characterized by life-limiting illness, creative storytelling occasions functioned as a relational practice of hope that transcended chasms, nurtured mindfulness and presence, and cultivated meaningfilled tomorrows. transcending chasms the progression of terminal illness often imposes corporeal changes that complicate patients’ communicative capacities, and shifts focus from the comfort of a previous life story to a perpetual fear [of] being unable to ever reconnect with the normal world.28(p110) in response, a primary goal in end-of-life care should be to maximize the human potential for thriving.29 to humanize the journey from life to death, the imaginative pursuit of possibility [page 6] [qualitative research in medicine & healthcare 2020; 4:8642] article no nco mm er cia l u se on ly is necessary, even in the midst of difficult, often exhausting, and painful realities that characterize the experience. the following vignettes illustrate the power of aesthetics to inspire narrative performances of self that are capable of fostering connections between people which transcend the divisive nature of their unique positionalities. for 16 weeks, bob had not touched the keys of his piano, previously an integral part of his everyday life. doctors told him that his cancer had metastasized to his brain, that his memory and cognitive capacity would drastically and quickly fade. he refused to let the diagnosis steal this defining marker of who he and others knew him to be – a masterful pianist. after numerous cie visits in which we relied on hymns played from the television stereo system, the disconnect between him and his craft was too much to take. he asked if i played, if i promised to not tell anyone if he played less than with excellence, and i responded yes to both of his extremely serious inquiries. he made me play first and the significance of what was at stake only enabled me to rely on the scales my grandmother had made me rehearse decades ago. i made it through only a minute before he motioned to the bench as if to ask permission to become himself again. witnessing his initial hesitance and eventual eagerness as he reclaimed his art was one of the most beautiful things i had ever witnessed but was topped by the genuine grin of exuding happiness as his fingers lingered on the keys long after the notes faded. in this moment, bob connected with one of the most meaningful parts of his life and i was invited to know a deeper dimension of his story. (first author fieldnotes). further, the corporeal conditions of some illnesses are to blame for the relational divides and communicative difficulties at end-of-life. a case in point is evident in one of our cie volunteer’s journals, which she kept for herself and shared with the first author during their one-on-one interview. ashley, one of the most outgoing and artistically-inclined volunteers, had been selected to try to lift joyce’s spirits which had been very low for a long time following an alzheimer’s diagnosis and loss of ability to speak in coherent sentences. joyce had simply quit speaking. because ashley had such a difficult time connecting with joyce, she took it upon herself to journal about the experience in hope that it would inspire ideas or at least motivate her persistence. on july 25, she wrote: she did not like me at first … i was a little offended … i’ve been meeting with her for three weeks now, and she still won’t make eye contact with me. … i couldn’t have possibly gotten a worse match. i am a talker. joyce falls asleep. in her august 1st entry, she described her approach to letting joyce know she was committed to being with her even when it was difficult. she reflected, whenever i talk, i sometimes think she tries to act like she is sleeping so i think she isn’t listening, but i talk anyway. … just one little head nod would be fantastic. … i feel like there hasn’t’ been much progress with our relationship. on august 16, though, initiated by ashley’s willingness to rub joyce’s back while holding her hand, the vibrancy of the outdoors, and a small yellow flower, things changed: it was a beautiful day… we sat at a bench to admire the waterfall and i noticed joyce was admiring the potted flowers, so i picked one for her. … she held it with a firm grip… and kept smelling it… she was so happy it was hers. ashley was moved by the significance of these aesthetic moments shared in relationship, not predicated by words at all, and documented what she deemed an incredible moment. when it was time for ashley to leave, she leaned down to say goodbye while looking joyce in the eyes. this time, fully expecting her to look past me like she normally does, she moaned… reached out her hands and placed them on my cheeks. … she pulled my face into her and kissed my forehead. joyce kissed my forehead! (excerpts from cie volunteer journal). suffering and illness are not easily reduced to words; they are a lived reality, evoking intense feelings. as janine, our volunteer coordinator described, when you work in hospice, it’s just intense; we are in crisis; somebody’s dying. cultivating edifying relationships takes concentrated time and effort, and often a good dose of imagination, to overcome the corporeal communicative challenges imposed by diagnoses, disease progression, and disassociation from self and others that seems to temporarily alleviate partial aspects of pain. cie relied on aesthetic moments and imaginative approaches to connecting with self and other, thereby enlarging narrative possibilities for relationship and ongoing significance of life as it approached its physically bound end. cie experiences broke through constraints of what traditionally counts as communication, embracing multi-sensory storytelling with music, lyrics, color, photographs, poetry, paints, and artifacts. these artful moments invited patients to use creative resources in their efforts to perform their selves and connect with others – they were able to feel, see, and create a new within an experience marked by physical and socioemotional pain. the miracle of imaginative and aesthetic narrative resources is realized when tangled scenes of life are made more intelligible … their meanings as the matter of a clarified, coherent, and intensified or ‘impassioned’ experience.30 in each of these examples, end-of-life circumstances previously perceived as isolating, for which individuals had no words sufficient in their ability to express the totality of their pain and desires, became shareable through new modes of multisensory experience. during cie experiences, imagination and narrative sensibilities enabled patients to meaningfully reconnect to their lives and others in rich aesthetic fashion. janine, the volunteer coordinator, emphasized the importance of these cie opportunities by saying, it comes down, with [qualitative research in medicine & healthcare 2020; 4:8642] [page 7] article no nco mm er cia l u se on ly these families and especially with the patients, to what ‘really matters.’ and these tools, these activities, these things matter … it helps them to express that and especially experience that. further, the art-based modalities revitalized individuals’ dynamic spirits, addressing what whalen31 described as the common intense desires at end-of-life: to leave lasting legacies, to thoughtfully review their lives, make peace with their losses, and deepen relationships with those whom would survive their death. nurturing mindfulness and presence hospice patients’ families, friends, care professionals, and volunteers create a circle of witnesses who not only observe loved ones but also travel with them through their experience affirm[ing] what is eternal, valuable, meaningful, and sacred in their lives.13(p19) unfortunately, when the corporeal changes in bodies and minds affect individuals’ abilities to interact with others, the building and maintaining of these relationships becomes a complex and challenging experience. further, relationships within the medical setting are fraught with relational chasms characterized by extreme differences in perspectives toward the circumstance at hand.11 freeing ourselves from preconceived notions that suggest hospice equates to the end – of life, relationship, meaning, possibility – invites us to imaginatively navigate relational challenges imposed by life-limiting illness and the anticipated grief of loss. when we rely on aesthetic dimension of communication and let it do its way 30 with us, we learn to be present within painful and challenging moments which allows us to move in edifying directions with one another. as dewey30 suggested of a growing life, so too may a relationship grow through pain and be, in effect, enriched by the state of disparity and resistance through which it has successfully passed. cie introduced a flexible foundation for patients and families to engage with one another. using imagination and aesthetic experience as narrative resources allowed them to make some sense of a significant disruption, immersed in the here and now with an orientation toward possibility. within these spaces, individuals moved beyond the immediacies of corporeal circumstances of illness to know the other and, in turn, themselves in new ways. these efforts achieved a transformation of time and space for patients and those in their circle of witnesses, an atmosphere made possible with what reverend rick, the spiritual care coordinator, called the ministry of presence which occurs when we choose to attend to the dying not by promising to alter their reality, but rather to say, for this moment, i’m going to be here, to journey with you. you’re not going to be alone. unfortunately, not all individuals living with terminal illness have the luxury of being surrounded by their loved ones on a consistent basis as they approach death. many of the grace hospice patients lived in the organization’s twenty-bed hospice home or a long-term healthcare facility in the community, which inevitably limited the time they were able to spend with family members and friends. for them, the urgency of a circle of witnesses beckoned staff members and volunteers to respond to moral moment[s]32 in pursuit of dialogic relationship. cie enabled individuals to cultivate these new relationships with the insight of imagination that opens doors to possibility, hope, and healing.30 for people like libby, who had limited interactions with others, these relationships and moral moments experienced therein were integral to healing because, as frank32(p45) suggested, the self has its origin and ongoing existence only in that realm. when libby was enrolled in hospice services, she was living in a full-time healthcare facility, steadily losing weight, talking about death, seeing people from her past, and saying she was ready to go. linda, her hospice nurse, learned that libby had enjoyed a successful music career and thought that she might appreciate visits from a cie volunteer. i met libby when i ventured down the long, lonely hallways to her room. before i reached her door, my heart was tugged by her voice, strenuously and urgently repeating: ‘who knows me? i don’t know who i am.’ i knocked on her doorframe. ‘libby? libby, may i visit with you for a while?’ she turned in my direction. an immediate smile joined the previously sad scene. ‘libby?’ i asked. ‘me? that’s me? do you know me? come tell me if you know who i am.’ i walked in and was immediately affected by the materials of her surround: an abundance of photographs pinned to a board on her wall, kleenex boxes adorned with her handwritten notes to herself, red lip prints from the countless kisses she gave to her white teddy bear, colorful flowers cut from magazine pages and scattered on her bedside table, and dove chocolate wrappers with quotes she found meaningful. here, this woman was using all she had at her disposal to create something beautiful of a circumstance that imposed social suffering. in our cie visits, we celebrated the stories of her life as she narrated them, prompted by photographs, newspaper clippings, and songs from her past that held special meaning. we talked about playing the piano and singing and she tried to help me expand my range because i struggled to hit the low notes of her favorite song, danny boy. every visit started the same ‘do you know who i am?’ to which i replied: ‘you’re my friend, libby.’” spurred by intentional questions to inspire descriptive tales of her past, with the help of google to fill in some of the forgotten pieces, she navigated stories of her life in my company. from the scenery and big white house in north carolina to meeting betty white at a dine & dance event in hollywood’s ambassador hotel, her stories brought life [page 8] [qualitative research in medicine & healthcare 2020; 4:8642] article no nco mm er cia l u se on ly into the previously dim room and light into her eyes. the affective nature of the experience also shifted the ways in which i understood my own role in these moments – as witness to her and her condition, as creative navigator of tough moments of frustration which were relieved in our enmeshment in music, colors, touch, and photographs. i often sat on the floor by her chair, holding one of her beautifully wrinkled hands while she twirled my hair between the fingers of her other. as reverend rick described, these cie moments are important because: ‘they are focused on life. patients need someone who cares about their story, who wants to know about the times they laughed, the times they cried, the people who loved them, and the ways they’ve loved others.’ this was mindfulness, this was presence; and, while i knew the fundamental purpose of my visit was to enhance libby’s holistic health, the connection was really good for me, too. (first author fieldnotes). the capacity of creative programming to foster a mindful presence that resists narrative foreclosure was continuously evidenced in cie experiences. throughout leon’s illness, patty was able to connect with her parents, both of whom she was losing quickly due to devastating diagnoses. leon and eileen had a special relationship and their love for one another was glaringly obvious with every sweet glance, laugh, and kiss. following one of their afternoon dates, eileen said, i don’t remember a lot of these stories on my own, but when leon tells our stories, it makes me happy to hear all the places we went and how much we’ve loved each other. patty expressed that bearing witness of this love was one thing she would miss most once they were gone, so we used cie resources to video-record some of their dates. patty further invested herself in these opportunities by digging through boxes of old photographs and putting together slideshows to guide their shared moments dwelling in the stories of the family narrative. after leon passed away, patty overflowed with appreciation – for the time spent with her parents and the gift of having those moments memorialized on video. you just, you just don’t think of doing that kind of thing when you’re in the midst of managing the illness and taking care of your parents, she reflected. i’m so very glad you were there to think of something that i just couldn’t on my own. i will cherish these moments. in cie interactions, identities were performed, relationships were consummated, and important conversations unfolded that otherwise may not have occurred. in these spaces, we witnessed what mattingly2 referred to as the narrative shape of hope, hope that is not merely cherished or passively received but actively cultivated, practiced. through an embodied, aesthetic approach to relationship, cie participants joined in a shared vulnerability and responsiveness to the humanity of one another. their capacities to be mindfully present and move with others through experience, to feel with and for one another, were fundamentally transformed to be communicable and endlessly shareable, reaffirming and celebrating individuals’ fundamental identities as ‘creators,’ ‘imaginers,’ and ‘makers’ in their relational narratives. 33 cultivating meaning-filled tomorrows in response to the significant changes imposed by lifethreatening illness and death, individuals are faced with the task of renegotiating meaning in life. the cie rooted relational responses in an artful perspective, inspired by what dewey30 described as not one of rationalization in response to this world of mystery, uncertainty, and doubt, but rather one navigated by the insight of imagination. such was the case for missy, a hospice patient in her early thirties with two young sons, who spent quite a bit of time in her room writing letters to her boys. she was determined to remain a powerful presence in their lives even after cancer took her life. missy had a keen awareness that her illness and death would shape her children’s futures. she also was aware her children would become constant reminders to her mother of a piece of her history that she had lost too soon. in recognition of this, missy used the cie to design a collage she would gift to her mother, crafted with their favorite colors, images, textures, and a photo representative of their mother-daughter bond: a keepsake reminder of their family legacy. end-of-life circumstances do disrupt and alter life stories, but they do not finalize them. as freeman19 recognized, [e]ven when one has reached what feels like a point of no return, it may nevertheless be possible to move creatively into the future. joey and josh, twin teen brothers who requested a cie photography session when their mother was transferred to the hospice home, knew this to be profoundly true. for, even though their mother’s death had been the lowest point of their lives, these young adult men found joy and purpose in capturing lasting images of their mother’s love. as we took photos of various tattoos she had inscribed on her body after they were born – their initials, the moon and stars, their favorite pet’s name – they reciprocated her gentle spirit and caring nature by moving bed linens, monitors, and wires to ensure that her legacy would not be marred by illness. only weeks after they said their final goodbye, the cie photographs prompted these brothers to share vivid stories with me; their memories flowed freely, from childhood and their pet duck to the music that helped them heal and their new tattoos in remembrance of their mom. joey and josh demonstrated that people have rich histories and hopefilled futures to share that can be spurred by the aesthetic qualities of the world around them. their aunt explained, something changed in those boys after the three of you spent time together … it was like they were full of life again, underscoring the powerful effect of the cie experiences and their capacity to enable individuals to embrace the legacies of those they love and co-construct family [qualitative research in medicine & healthcare 2020; 4:8642] [page 9] article no nco mm er cia l u se on ly legacies that fuel rather than constrict the future of their stories. death does not mean finality. this is something that reverend rick stressed time and again, those left behind have lives intertwined with those they have lost. … legacies continue in us. patrice, the bereavement coordinator, referred to the spaces that cie created as holy ground, places that were personalized and creatively responsive to individuals’ unique experiences and need to account meaningfully for their loss. dewey30 encouraged individuals to move beyond the tendency to beat down or bury painful experiences and, instead, use them as an invitation to reflection. in recognition of this, the first author and her significant other relied upon narrative imagination and aesthetic appreciation to guide their approach in working as teen leaders for grace hospice’s annual family-bereavement retreat. these young individuals (four had lost an older sibling or close relative to suicide and one lost a younger sibling to drowning) shared that they often felt misunderstood and intentionally silenced their own thoughts and emotions in effort to be strong for their family. although their experiences were undeniably tragic, each one desperately wanted to hold fast to positive memories of their loved one. throughout the weekend they engaged in of a wide range of activities (e.g., a bonfire, sparklers, funny photo session, charades, canoeing, walks through the woods, photography, painting, collages, beaded acronym bracelets) that elicited storytelling occasions in which they thoughtfully reflected on the life legacies of those they had lost. there was something spectacular in the aesthetically rich collaborative space that made room for possible futures previously unimagined. further, they embraced vulnerability and demonstrated their resiliency as they shared new perspectives gained from their experiences with other family members. in these various end-of-life contexts, cie experiences became spaces in which individuals challenged themselves to perceive the potency of immediate circumstance as temporal events that begged significance beyond themselves. as patients and families interacted in these artbased storytelling occasions, they co-constructed their relational stories in edifying ways that unveiled possibilities for their tomorrows. the active performance and building of family legacies invites individuals to attend to the and then of their stories, or from a deweyan perspective, a concentrated effort to carry the past into the present and future to deepen the moral commitment of cultivating an artful life. conclusions cie embraced an artful approach to living and dying. rather than submitting to the finality of death, volunteers, patients, and patients’ family members relied upon their aesthetic sensibilities and narrative imagination as resources that enabled them to actively cultivate hope amid the uncertainties and pain inherent in end-of-life circumstances. individuals’ multisensory stories, guided by an impulse of imagination, functioned to move people – not just in an emotive sense, but also in a transformative manner to other perspectives and possibilities. the legacies of lives lost in a medical sense remain powerfully present in histories shared and memories made throughout the course of illness. relational bonds survive. futures may be imagined that hold fast to the legacies of those whose lives end before our own. in the context of end-of-life, the value of stories cannot be over-emphasized. conjoining imagination and narrative understanding breathes life into living, and dying. clarity emerges through chaos while complexity is acknowledged;17 permanence and change intertwine and coexist as integral supporting elements to one another;34 lives and relationships grow in edifying ways as individuals artfully move through temporal moments of disparity and joy.30 as evident in cie moments, the complexity of these circumstances requires an imaginative stance toward the temporal nature of the events and relationships that give shape and meaning to our lives. we are, as andrews5 noted, living, breathing and interacting in the world even while our minds are full of memories and dreams and this is the precise balancing act which defines us as human beings. to ignore these rich aspects of human nature would be to discount some of the most affective features of life. if we wish to celebrate humanizing approaches to care – to enlarge our capacities to realize the relational depths waiting to be achieved with creative and compassionate adventure – we must admit that we fail ourselves and one another when we reduce our communication to words and sequester the meaningfulness of past stories, present moments, and future possibilities due to the challenges brought on by circumstance. language is limited. life and its ending are confusing, chaotic, and messy journeys; they are also beautiful, experienced and expressed in vivid ways. our stories should reflect this reality. our relational choices, personal and professional, should have the courage, the audacity, to embrace imagination as a narrative sensemaking resource that is responsive to life’s inherent fragility and vulnerability. real life happens in the difficult and the ordinary of every day—we make it extraordinary, though, and experience what foster35 described as the magic in the mundane when we are willing to put our imaginations to work and actively story our experiences. in doing so, we create edifying relational spaces: where histories and possibilities are intimately tied to the potency of the present; where individuals may navigate experience with a situated, yet dynamic, perspective; where people may be simultaneously rooted in the present moment, while transporting themselves to the stories of their pasts and imagined futures so as to enrich existence with acknowledgement [page 10] [qualitative research in medicine & healthcare 2020; 4:8642] article no nco mm er cia l u se on ly that experiences do hold far greater meaning than their temporal tethers. imaginative narrative resources offer us the opportunity to pursue more nuanced understandings of what stories do to and for people. we witnessed the aesthetic spirit and impulse of stories, told and performed, working on people. no matter how it manifested – whether the innate desire to play the piano or sing, or perhaps the accepted invitation to paint when someone never thought they would have the chance, a daughter who asks her parents to record stories of their life together, or a hospice nurse who recognizes that her patient needs something more than the details outlined in her hospice care plan – narrative imagination and aesthetic sensibilities worked together in end-of-life settings to actively refuse narrative foreclosure in a context all-too-often misunderstood as being the end. we hope our portrayal of cie encourages readers to explore what is accomplished by the stories people perform and tell and what is made possible by the multisensory modalities with which they are created and shared. these imaginative endeavors paved way for relational practices of hope that transcended circumstance and served the critical functions of transcending chasms, nurturing mindfulness and presence, and cultivating legacies and meaning-filled tomorrows. in recognizing the potentials of narrative imagination and creative forms of communication, we may attend to people with grace in the vulnerable experiences of life, offer practical opportunities to strengthen resiliency, enhance the manner in which care is cultivated in the health professions, embrace the essence of being human amid the very real difficulties that 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