Showing papers in "Qualitative Health Research in 2014"
TL;DR: A structured phenomenological approach to interviewing applies questions based on themes of experience contextualization, apprehending the phenomenon and its clarification, and employing descriptive and structural questioning to explore experience.
Abstract: In this article I propose a method of interviewing for descriptive phenomenological research that offers an explicit, theoretically based approach for researchers My approach enables application of descriptive phenomenology as a total method for research, and not one just focused on data analysis This structured phenomenological approach to interviewing applies questions based on themes of experience contextualization, apprehending the phenomenon and its clarification The method of questioning employs descriptive and structural questioning as well as novel use of imaginative variation to explore experience The approach will help researchers understand how to undertake descriptive phenomenological research interviews
468 citations
TL;DR: It is proposed that clinician acceptance explains much of the variation in the uptake, expansion, and sustainability of Australian telehealth services, and that Clinician acceptance could, in most circumstances, overcome low demand, technology problems, workforce pressure, and lack of resourcing.
Abstract: Telehealth, the delivery of health care services at a distance using information and communications technology, has been slow to be adopted and difficult to sustain. Researchers developing theories concerning the introduction of complex change into health care usually take a multifactorial approach; we intentionally sought a single point of intervention that would have maximum impact on implementation. We conducted a qualitative interview study of 36 Australian telehealth services, sampled for maximum variation, and used grounded theory methods to develop a model from which we chose the most important factor affecting the success of telehealth. We propose that clinician acceptance explains much of the variation in the uptake, expansion, and sustainability of Australian telehealth services, and that clinician acceptance could, in most circumstances, overcome low demand, technology problems, workforce pressure, and lack of resourcing. We conclude that our model offers practical advice to those seeking to implement change with limited resources.
275 citations
TL;DR: It is shown that the naturalistic case study can have extraordinary value in health research, and is useful from a variety of perspectives, by presenting a case report of a 92-year-old resident moving to a care center.
Abstract: Case studies can provide us with in-depth understanding of a single demarcated entity. Cases can be corporations and clinics, but are usually people. There are several approaches to case study. Naturalistic case study constitutes the science of the particular. The aim of naturalistic case study is to understand with minimum intervention the particularity of a case in its ordinary situation from multiple perspectives. Naturalistic case study relies on a humanistic commitment to study the world from the human perspective. The purpose here is to illuminate how five key features of naturalistic case study can be used in health research. Case studies are of use in various disciplines. In this article we show that the naturalistic case study can have extraordinary value in health research, and is useful from a variety of perspectives. We do so by presenting a case report of a 92-year-old resident moving to a care center.
133 citations
TL;DR: This article presents best-practice guidelines derived from the literature and experience to help researchers determine if an online qualitative study design is appropriate for their research project and, if so, when to begin data collection with a hard-to-reach population.
Abstract: Researchers new to online qualitative health research frequently have questions about how to transfer knowledge of offline data collection to an online environment. In this article, we present best-practice guidelines derived from the literature and our experience to help researchers determine if an online qualitative study design is appropriate for their research project and, if so, when to begin data collection with a hard-to-reach population. Researchers should reflect on administrative, population, and data collection considerations when deciding between online and offline data collection. Decisions must be made regarding whether to conduct interviews or focus groups, to collect data using asynchronous or synchronous methods, and to use only text or to incorporate visual media. Researchers should also reflect on human subjects, recruitment, research instrumentation, additional data collection, and public relations considerations when writing protocols to guide the research team's response to various situations. Our recommendations direct researchers' reflection on these considerations.
124 citations
TL;DR: It is suggested that full recovery from chronic anorexia nervosa is possible and the importance of hope, motivation, self-efficacy, and support from others in the recovery process is emphasized.
Abstract: In this study, we aimed to explore the process of recovery over time from the perspective of those who had fully recovered from chronic anorexia nervosa (AN), using stringent recovery criteria. Eight women, assessed as fully recovered from chronic AN, told their story of the process of recovery. Data were analyzed using the qualitative method, narrative inquiry. Recovery was identified as a long and complex process that spanned four phases: from being unable or unready to change, to experiencing a tipping point where motivation increased and changed in quality, allowing the women to take action against the AN and finally allowing them to reflect and rehabilitate. Results provide a framework for understanding this complex process. Findings suggest that full recovery from chronic AN is possible and emphasize the importance of hope, motivation, self-efficacy, and support from others in the recovery process.
104 citations
TL;DR: This research examined the experiences of individuals living with obesity, the perceptions of health care providers, and the role of social, institutional, and political structures in the management of obesity using feminist poststructuralism as the guiding methodology to identify three key themes.
Abstract: In this research, we examined the experiences of individuals living with obesity, the perceptions of health care providers, and the role of social, institutional, and political structures in the management of obesity. We used feminist poststructuralism as the guiding methodology because it questions everyday practices that many of us take for granted. We identified three key themes across the three participant groups: blame as a devastating relation of power, tensions in obesity management and prevention, and the prevailing medical management discourse. Our findings add to a growing body of literature that challenges a number of widely held assumptions about obesity within a health care system that is currently unsupportive of individuals living with obesity. Our identification of these three themes is an important finding in obesity management given the diversity of perspectives across the three groups and the tensions arising among them.
91 citations
TL;DR: A synthesis of data from two in-depth qualitative studies in which morbidly obese participants were able to explain the development of the condition in their own terms is presented.
Abstract: Although there has been extensive research around the etiology of moderate obesity, there are still important questions relating to the development and lived experience of extreme obesity. We present a synthesis of data from two in-depth qualitative studies in which morbidly obese participants (N = 31) were able to explain the development of the condition in their own terms. We identified consistent themes in the two datasets, and undertook a detailed data synthesis. Particularly salient themes in the development of morbid obesity related to family structures and early socialization experiences, and the role of emotional distress was dominant in both initial weight gain and ongoing cycles of loss and regain. All informants accepted some responsibility for their health state, but identified a number of mitigating factors that limited personal culpability that were often related to the fulfillment of gendered social expectations.
88 citations
TL;DR: Satisfaction of the needs for competence and relatedness were central for participation during exercise at the adoption stages, and autonomy was particularly pertinent in facilitating adherence.
Abstract: Grounded in Self-Determination Theory, we aimed to explore and identify key motivational processes involved in the transition from a physically inactive to an active lifestyle, and the processes involved in lapse and dropout behavior within a walking program. We implemented a qualitative, longitudinal case study method, using semistructured interviews and theoretical thematic analyses. Fifteen women were interviewed over 10 months and three profiles were generated: (a) nonadherence, (b) lapse/readoption of physical activity, and (c) adherence. Internalization of walking behavior was key to adherence. Satisfaction of the needs for competence and relatedness were central for participation during exercise at the adoption stages, and autonomy was particularly pertinent in facilitating adherence. Those who lapsed and restarted physical activity experienced feelings of autonomy at the point of readoption. Sources of support were driving forces in the adoption and adherence phases.
86 citations
86 citations
TL;DR: In this paper, the authors conducted a metasynthesis that included 16 qualitative studies and identified 11 themes that require consideration when developing a type 2 diabetes prevention intervention in this population, including addressing the emotional impact of gestational diabetes, providing women with clear and timely information about future diabetes risk, and offering an intervention that fits with women's multiple roles as caregivers, workers, and patients, and focusing on the health of the whole family.
Abstract: Women with gestational diabetes are at high risk of developing type 2 diabetes, which could be prevented or delayed by lifestyle modification. Lifestyle interventions need to take into account the specific situation of women with gestational diabetes. We aimed to gain a deeper understanding of women’s experiences of gestational diabetes, their diabetes risk perceptions, and their views on type 2 diabetes prevention, to inform future lifestyle interventions. We conducted a metasynthesis that included 16 qualitative studies and identified 11 themes. Factors that require consideration when developing a type 2 diabetes prevention intervention in this population include addressing the emotional impact of gestational diabetes; providing women with clear and timely information about future diabetes risk; and offering an intervention that fits with women’s multiple roles as caregivers, workers, and patients, and focuses on the health of the whole family.
81 citations
TL;DR: Practical practitioners seeking to improve diet and health outcomes for Aboriginal adults living in a remote Australian community should attend to past and present contexts of food in nutrition education, support the educative role of caregivers, address the high cost of food, and support access to traditional foods.
Abstract: We explored with Aboriginal adults living in a remote Australian community the social context of food choice and factors perceived to shape food choice. An ethnographic approach of prolonged community engagement over 3 years was augmented by interviews. Our findings revealed that knowledge, health, and resources supporting food choice were considered “out of balance,” and this imbalance was seen to manifest in a Western-imposed diet lacking variety and overrelying on familiar staples. Participants felt ill-equipped to emulate the traditional pattern of knowledge transfer through passing food-related wisdom to younger generations. The traditional food system was considered key to providing the framework for learning about the contemporary food environment. Practitioners seeking to improve diet and health outcomes for this population should attend to past and present contexts of food in nutrition education, support the educative role of caregivers, address the high cost of food, and support access to traditional foods.
TL;DR: This article integrated critical narrative review findings with data from two discussion groups: qualitative researchers and research users/consumers to identify an important and novel theme of relationships that was emerging from the perspectives of researchers and users.
Abstract: In this article, we explore ethical issues in qualitative secondary analysis through a comparison of the literature with practitioner and participant perspectives. To achieve this, we integrated critical narrative review findings with data from two discussion groups: qualitative researchers and research users/consumers. In the literature, we found that theoretical debate ran parallel to practical action rather than being integrated with it. We identified an important and novel theme of relationships that was emerging from the perspectives of researchers and users. Relationships were significant with respect to trust, sharing data, transparency and clarity, anonymity, permissions, and responsibility. We provide an example of practice development that we hope will prompt researchers to re-examine the issues in their own setting. Informing the research community of research practitioner and user perspectives on ethical issues in the reuse of qualitative data is the first step toward developing mechanisms to better integrate theoretical and empirical work.
TL;DR: This 14-month ethnographic study examined the emotional labor and coping strategies of 114, level-4, neonatal intensive care unit (NICU) nurses and can contribute to the development of interventions to nurse the nurse, and to ultimately facilitate NICU nurses’ nurturance of stressed families.
Abstract: In this 14-month ethnographic study, I examined the emotional labor and coping strategies of 114, level-4, neonatal intensive care unit (NICU) nurses. Emotional labor was an underrecognized component in the care of vulnerable infants and families. The nature of this labor was contextualized within complex personal, professional, and organizational layers of demand on the emotions of NICU nurses. Coping strategies included talking with the sisterhood of nurses, being a super nurse, using social talk and humor, taking breaks, offering flexible aid, withdrawing from emotional pain, transferring out of the NICU, attending memorial services, and reframing loss to find meaning in work. The organization had strong staffing, but emotional labor was not recognized, supported, or rewarded. The findings can contribute to the development of interventions to nurse the nurse, and to ultimately facilitate NICU nurses' nurturance of stressed families. These have implications for staff retention, job satisfaction, and delivery of care.
TL;DR: Drawing on qualitative data with people involved in the National Cancer Research Network in the United Kingdom, it is suggested that PPI in research also offers spaces for the reconfiguration of self and identity.
Abstract: An enduring theme in the literature exploring patient and public involvement (PPI) in research has been the focus on evaluating impact, defined usually in terms of participants’ practical contribution to enhancing research processes. By contrast, there has been less emphasis on the perspectives and experiences of those involved in PPI. Drawing on qualitative data with people involved in the National Cancer Research Network in the United Kingdom, we report on what motivated participants to get involved and their experiences of involvement in this setting. We highlight how those involved in PPI often espoused the notion of the “good citizen,” with PPI in research being a natural extension of their wider civic interests. However, our findings also highlight how PPI was an important resource, utilized by participants to make sense of living with chronic illness. We suggest that PPI in research also offers spaces for the reconfiguration of self and identity.
TL;DR: Paramedics, who connected with their feelings regarding the patient and/or the family in different CIs, as well as those who sensed a lack of control, experienced difficult and negative emotions and used a variety of coping strategies to achieve detachment.
Abstract: Paramedics frequently encounter critical incidents (CIs). Their emotional, cognitive, and behavioral responses to these encounters present them with a variety of difficulties on the way to, during, and after events. The aim of our study was to examine how paramedics working in a large emergency service organization in Israel experienced CIs and the coping strategies they used to deal with these experiences. We interviewed 15 paramedics from this organization. Through data analysis, we revealed two main themes: (1) between connection and detachment and (2) between control and lack of control of the situation. Paramedics, who connected with their feelings regarding the patient and/or the family in different CIs, as well as those who sensed a lack of control, experienced difficult and negative emotions. To achieve detachment, they used a variety of coping strategies. Those who experienced cognitive and functional control of the situation reported a positive and empowering experience.
TL;DR: It was found that the barriers to and facilitators of implementation of clinical pharmacy services slotted into the environment and participant dimensions of Scott’s adapted version of Leavitt's organizational model.
Abstract: New policies in China have recently led to the implementation of clinical pharmacy services in hospitals. We explored the views of hospital administrators, pharmacy directors, clinical pharmacists, and dispensing pharmacists about the factors affecting clinical pharmacy services in China, using the framework approach and organizational theory. We conducted 30 interviews with 130 participants at 29 hospitals (both secondary and tertiary) in Beijing, Zhengzhou, Luoyang, and Shanghai. We found that the barriers to and facilitators of implementation of clinical pharmacy services slotted into the environment and participant dimensions of Scott's adapted version of Leavitt's organizational model. External support from government was perceived as crucial to promoting pharmacy services. It is proposed that the internationally recognized Basel Statements of the International Pharmaceutical Federation also provide a strong foundation for guiding China in implementing clinical pharmacy services.
TL;DR: This study explores the contested space of home-to-hospital transfers that occur during labor or in the immediate postpartum period as a means of identifying the mechanisms that maintain philosophical and practice divides between homebirth midwives and hospital-based clinicians in the United States.
Abstract: The purpose of this study was to explore the contested space of home-to-hospital transfers that occur during labor or in the immediate postpartum period, as a means of identifying the mechanisms that maintain philosophical and practice divides between homebirth midwives and hospital-based clinicians in the United States. Using data collected from open-ended, semistructured interviews, participant observation, and reciprocal ethnography, we identified six key themes-three from each provider type. Collectively, providers' narratives illuminate the central stressors that characterize home-to-hospital transfers, and from these, we identify three larger sociopolitical mechanisms that we argue are functioning to maintain fractured articulations at the time of transfer. These mechanisms impede efficient and mutually respectful interactions and can result in costly delays. However, they also contain the seeds of possible solutions, and thus are important starting points for developing an integrated maternity system premised on mutual accommodation and seamless articulations across all delivery locations.
TL;DR: This article presents iconographic and thematic analysis for the 23 photovoice works from two pilots of the Recovery Narrative Photovoice intervention, revealing several themes, including metaphors for mental illness, associated losses, recovery strategies, and recovery outcomes.
Abstract: People with serious mental illness face stigma that interferes with recovery. Photovoice is a method that integrates photography and writing, providing a valuable means for capturing the narratives of people with mental illness whose voices are often marginalized. The purpose of the present article is to explore the meaning of recovery for individuals with serious mental illness based on a qualitative analysis of a new photovoice-based intervention, Recovery Narrative Photovoice. This intervention focuses on promoting the process of recovery and sense of identity through the creation of empowering visual images and narratives of recovery for individuals with serious mental illness. In this article, we present iconographic and thematic analysis for the 23 photovoice works from two pilots of the Recovery Narrative Photovoice intervention. Results reveal several themes, including metaphors for mental illness, associated losses, recovery strategies, and recovery outcomes. A final theme pertains to recovery messages learned from the recovery process.
TL;DR: Through 58 in-depth interviews, it is demonstrated how differences in social and cultural capital between women of low and high socioeconomic status (SES) result in different ways of learning about health.
Abstract: Health information influences an individual's health outcomes. Indeed, researchers have found that communication inequalities contribute to health inequalities. We do not have a clear understanding of why and how the communication disparities exist, however, particularly the social forces behind such differences. The qualitative nature of this article reveals the nuances of health information seeking using the case of infertility. Through 58 in-depth interviews, I demonstrate how differences in social and cultural capital between women of low and high socioeconomic status (SES) result in different ways of learning about health. Women of high SES have access to support groups, physicians, and the Internet, whereas women of low SES do not discuss their health problems with their peers, and lack access to and distrust physicians. I explore how these differences in health information shape the illness experience. I conclude with policy implications.
TL;DR: Compared face-to-face focus groups and an online forum in qualitative research with people with multiple sclerosis (MS) and family members, there was a high level of overlap in the themes generated between groups.
Abstract: We compared face-to-face focus groups and an online forum in qualitative research with people with multiple sclerosis (MS) and family members. Although the merits and challenges of online qualitative research have been considered by others, there is limited literature directly comparing these two data collection methods for people with disability or chronic illness. Twenty-seven people participated in one of four focus groups and 33 people took part in an online forum. Demographic and MS-related characteristics were similar between the two groups, with a slight nonsignificant trend toward nonmetropolitan residence in online forum participants. There was a high level of overlap in the themes generated between groups. Participant responses in the online forum were more succinct and on-topic, yet in the focus groups interaction was greater. Online qualitative research methods can facilitate research participation for people with chronic illness or disability, yielding generally comparable information to that gathered via face-to-face methods.
TL;DR: The barriers that emerged for university- and community-based partners as they asserted individual and collective identities, and negotiated boundaries, access, and power relations in the process of designing and conducting research are explored.
Abstract: We consider the work of research ethics boards and funding models for research that at times are incompatible with the relationship building required for feminist participatory action research with a disability community. We explore the barriers that emerged for university- and community-based partners as they asserted individual and collective identities, and negotiated boundaries, access, and power relations in the process of designing and conducting research. This critical reflection contributes to our understanding of the structures of academic research funding, ethics approval, and how problematic conceptualizations of vulnerability embedded in the Tri-Council Policy Statement and research ethics board practices impact on relationship building and the research process. Recommendations for change will be helpful to researchers studying disability, those using participatory action research, and individuals serving on ethics review boards.
TL;DR: The findings indicate that caring for a spouse with severe mental illness is a unique role compared with other caring roles and has implications for how mental health service providers work with and support spouse carers.
Abstract: The burden of caring for family members with mental illness has been researched extensively; however, knowledge of spouse carers' experiences is limited. In this article, we explore this from a carers' perspective, with 28 spouse carers, using qualitative open-ended semistructured interviews and a grounded theory approach informed by the social interactionism tradition to collect and analyze the data. We present six interrelated themes around the central theme of this being "a real and genuine relationship." The findings indicate that caring for a spouse with severe mental illness is a unique role compared with other caring roles. First and foremost, spouse carers strive for the relationship with their partner and accommodate mental illness into their lives to protect the relationship. Because of this, they often lead surreal lives marked by significant emotional pressure and isolation. This has implications for how mental health service providers work with and support spouse carers.
TL;DR: The challenges faced by bilingual health and social services professionals in a Canadian bilingual setting, as well as the strategies used to overcome them are explored.
Abstract: We explore in this qualitative research the challenges faced by bilingual health and social services professionals in a Canadian bilingual setting, as well as the strategies used to overcome them. Eight focus groups were conducted with a total of 43 bilingual Francophone professionals who offered services in French in 21 health and social service organizations in eastern Ontario, Canada. We highlight linguistic issues affecting a minority Francophone clientele, the shortage of services in French, and organizational issues within these agencies. The solutions that the professionals adopt for better serving the clients and overcoming these challenges focus on adapting services from linguistic angles. In the long term, such an enhanced approach can affect staff well-being. Ensuring access to services for linguistic minority populations and the active offer of same should not rest solely on the shoulders of such professionals, but rather on organizational strategies.
TL;DR: A randomly selected sample of metasynthesis articles was systematically reviewed to identify the types of findings that have been produced and methods for moving metasyNThesis findings into relationship are discussed.
Abstract: Early on, qualitative researchers predicted that metasynthesis research had the potential to significantly push knowledge development forward. More recently, scholars have questioned whether this is actually occurring. To examine this concern, a randomly selected sample of metasynthesis articles was systematically reviewed to identify the types of findings that have been produced. Based on this systematic examination, it appears that findings from metasynthesis investigations might not be reaching their full potential. Metasynthesis investigations frequently result in isolated findings rather than findings in relationship, and opportunities to generate research hypotheses and theoretical models are not always fully realized. With this in mind, methods for moving metasynthesis findings into relationship are discussed.
TL;DR: The lived experiences of women who had a surgical menopause as a result of undergoing a hysterectomy with Bilateral Salpingo-Oopherectomy are explored to examine the prominent and underresearched theme of body image change.
Abstract: We aimed to explore the lived experiences of women who had a surgical menopause as a result of undergoing a hysterectomy with Bilateral Salpingo-Oopherectomy (BSO). We adopted a qualitative interview design using Interpretative Phenomenological Analysis (IPA), and recruited 7 women aged 47 to 59. We conducted synchronous online semistructured interviews using the MSN (Microsoft Network) Messenger program. In the findings, we examine the prominent and underresearched theme of body image change. We discuss the women's journey from a deep internal bodily change, the meaning of this changing body image, through to the thoughts and behaviors involved with self-presentation concerns and coping with body image changes. A woman's perceived attractiveness and appearance investment are important factors to consider regarding adaptation to change over this transition. The findings might have implications for interventions designed to enhance mental well-being and increase health behaviors in women experiencing gynecological illness and/or menopause.
TL;DR: A feminist standpoint lens is used to explore the process by which BRCA-positive women came to socially construct and understand their risk for developing breast and/or ovarian cancer and the treatment options they elected post-testing.
Abstract: Little is known about how the breast cancer (BRCA) gene mutation affects women's decision-making processes. I use a feminist standpoint lens to explore the process by which BRCA-positive women came to socially construct and understand their risk for developing breast and/or ovarian cancer and the treatment options they elected post-testing. This study included in-depth interviews with 64 BRCA-positive mutation women, some of whom sought surveillance and others who opted for preventive surgical intervention. The in-depth analysis and case study approach revealed a complex cancer risk assessment resulting in a "nexus of decision making" that does not mirror a statistical medical model of risk assessment. The particular configuration of women's nexus of decision making impacted their pre- and posttesting BRCA experience as empowering or disempowering, regardless of whether they elected surgery or surveillance. I discuss the implications for development of clinical strategies that will serve to enhance women's pre- and post-BRCA decision making.
TL;DR: It is documented that not only did participants report a range of positive outcomes across multiple systems of influence, but they experienced some negative outcomes because of disruption to work flow and a changing of work habit.
Abstract: We aim to provide a better picture of the outcomes associated with implementing a nonpurposeful, physical activity, e-health intervention in a professional workplace. There is a need for health professionals to evaluate physical-activity-based workplace health interventions with a full range of measures. Using a social ecological model as a basis, we identify a range of subjective outcomes from 15 interviews of a cross section of participants. We document that not only did participants report a range of positive outcomes across multiple systems of influence, but they experienced some negative outcomes because of disruption to work flow and a changing of work habit. We conclude that using subjective evaluations provides a comprehensive picture of the factors that influence judgments of the efficacy of a workplace health intervention.
TL;DR: An ethnographic analysis of a psycho-education and peer-support program for school-aged children of parents with mental illnesses finds participants used humor to manage group expectations, revealing how they made sense of their parents’ problems, as well as their own.
Abstract: We report an ethnographic analysis of a psycho-education and peer-support program for school-aged children of parents with mental illnesses. We conducted a critical discourse analysis of the program manual and observed group interactions to understand whether children shared program goals predetermined by adults, and how, or if, the intervention was responsive to their needs. Children were expected to learn mental illness information because “knowledge is power,” and to express difficult feelings about being a child of a mentally ill parent that was risky. Participants used humor to manage group expectations, revealing how they made sense of their parents’ problems, as well as their own. Suggestions are made for determining good mental health literacy based on children’s preferences for explaining circumstances in ways they find relevant, and for supporting children’s competencies to manage relationships that are important to them.
TL;DR: It is argued that communication is embedded in social relations of hope, justice, and uncertainty, as well as being shaped by patient biographies, when negotiating this transition to specialist palliative care.
Abstract: Communication about palliative care represents one of the most difficult interpersonal aspects of medicine. Delivering the "terminal" diagnosis has traditionally been the focus of research, yet transitions to specialist palliative care are equally critical clinical moments. Here we focus on 20 medical specialists' strategies for engaging patients around referral to specialist palliative care. Our aim was to develop an understanding of the logics that underpin their communication strategies when negotiating this transition. We draw on qualitative interviews to explore their accounts of deciding whether and when to engage in referral discussions; the role of uncertainty and the need for hope in shaping communication; and their perceptions of how patient biographies might shape their approaches to, and communication about, the end of life. On the basis of our analysis, we argue that communication is embedded in social relations of hope, justice, and uncertainty, as well as being shaped by patient biographies.
TL;DR: This article uses concept analysis methodology—predominantly concept clarification—to clarify the concept of change in self-identity following traumatic brain injury (TBI), and presents an integrative model of this process.
Abstract: Our aim with this article is to clarify the concept of change in self-identity following traumatic brain injury (TBI). We used concept analysis methodology-predominantly concept clarification. We identified 110 articles using a systematic literature search, and used critical appraisal, content analysis, and analytical questioning to explore attributes and boundaries. A reported change in self-identity is the ultimate expression of a variety of cognitive, psychological, and social sequelae of TBI. We present an integrative model of this process, identifying three potential levels of change: (a) component parts (egocentric self, sociocentric self, and "identity as shared with others"); (b) integral processes (self-awareness and expression via meaningful occupation and narratives); and (c) whole-system disruption. Change in self-identity after TBI is a highly individualistic process. The driver of this process is "self-reflective meaning making," giving a purpose and direction in life, providing motivation and goals for future behavior.