Showing papers in "Qualitative Health Research in 2011"
TL;DR: This article, from a keynote address, is the result of some of the things which I learned about qualitative research during my many years of doing and teaching it.
Abstract: This article, from a keynote address, is the result of some of the things which I learned about qualitative research during my many years of doing and teaching it. The main point I make is that qualitative researchers should present a good story which is based on evidence but focused on meaning rather than measurement. In qualitative inquiry, the researchers' selves are involved, their experiences become a resource. Researchers cannot distance themselves from the other participants, although they cannot fully present their meaning and experience. I also discuss voice, paradigm, and innovation as potentially problematic issues in qualitative research. These are terms often used but not always examined for their meaning in qualitative inquiry. If researchers are aware and sensitive, rather than overemotional or self-absorbed, qualitative research can be enlightening, person-centered, and humanistic.
207 citations
TL;DR: A reflexive discussion of two studies in which Heideggerian hermeneutic phenomenology was used to explore people’s experiences of sexuality and intimacy within the context of their illness to illustrate the different effects of joint and one-to-one interviews.
Abstract: Heideggerian researchers recognize that people and their worlds are coconstructed; people make sense of their world from within it, not detached from it. The presence of one's partner in a joint interview will therefore influence the experience of participants, and will also influence the descriptions they provide. In this article, we present a reflexive discussion of two studies in which we used Heideggerian hermeneutic phenomenology to explore people's experiences of sexuality and intimacy within the context of their illness. We present the Heideggerian concepts of Dasein, authenticity and truth, and draw on extracts from our interview transcripts to exemplify the different effects of joint and one-to-one interviews. We also discuss ethical considerations regarding these different interview approaches. Heidegger's philosophy does not preferentially support either method, but helps us to be clearer about the merits and limitations of each approach. Combining both approaches provides richer understanding of phenomena.
186 citations
TL;DR: Findings from an ethnographic study in which experiences of access to primary care services from the perspective of Aboriginal people seeking care at an emergency department located in a large Canadian city are discussed.
Abstract: In this article, we discuss findings from an ethnographic study in which we explored experiences of access to primary care services from the perspective of Aboriginal people seeking care at an emergency department (ED) located in a large Canadian city. Data were collected over 20 months of immersion in the ED, and included participant observation and in-depth interviews with 44 patients triaged as stable and nonurgent, most of whom were living in poverty and residing in the inner city. Three themes in the findings are discussed: (a) anticipating providers' assumptions; (b) seeking help for chronic pain; and (c) use of the ED as a reflection of social suffering. Implications of these findings are discussed in relation to the role of the ED as well as the broader primary care sector in responding to the needs of patients affected by poverty, racialization, and other forms of disadvantage.
173 citations
TL;DR: The historical groundings of what have become methodological conventions in the use of qualitative approaches to answer questions arising from the applied health disciplines are traced and an alternative logic more strategically grounded in the epistemological orientations of the professional health disciplines is advocated.
Abstract: In this article, I trace the historical groundings of what have become methodological conventions in the use of qualitative approaches to answer questions arising from the applied health disciplines and advocate an alternative logic more strategically grounded in the epistemological orientations of the professional health disciplines. I argue for an increasing emphasis on the modification of conventional qualitative approaches to the particular knowledge demands of the applied practice domain, challenging the merits of what may have become unwarranted attachment to theorizing. Reorienting our methodological toolkits toward the questions arising within an evidence-dominated policy agenda, I encourage my applied health disciplinary colleagues to make themselves useful to that larger project by illuminating that which quantitative research renders invisible, problematizing the assumptions on which it generates conclusions, and filling in the gaps in knowledge needed to make decisions on behalf of people and ...
139 citations
TL;DR: It is found that trust relationships were negotiated implicitly, and Physicians were authorized by patients to exercise their judgment as medical doctors to varying degrees, the patient’s mandate of trust to the physician.
Abstract: We examine the conditions for trust relationships between patients and physicians. A trust relationship is not normally negotiated explicitly, but we wanted to discuss it with both patients and physicians. We therefore relied on a combination of interviews and observations. Sixteen patients and 8 family physicians in Norway participated in the study. We found that trust relationships were negotiated implicitly. Physicians were authorized by patients to exercise their judgment as medical doctors to varying degrees. We called this phenomenon the patient's mandate of trust to the physician. A mandate of trust limited to specific complaints was adequate for many medical procedures, but more open mandates of trust seemed necessary to ensure effective and humane treatment for patients with more complex and diffuse illnesses. More open mandates of trust were given if the physician showed an early interest in the patient, was sensitive, gave time, built alliances, or bracketed normal behavior.
131 citations
TL;DR: Common to all decision narratives was that relationship status framed college women’s perceptions of HPV susceptibility, and theoretical and practical implications for designing HPV vaccine messages aimed at college-aged women are discussed.
Abstract: Drawing on 38 in-depth qualitative interviews with college women and college health clinicians, we collected human papillomavirus (HPV) vaccine decision narratives to identify the implicit and explicit values underlying HPV vaccine decision making. Narratives of vaccine acceptance and resistance were identified. Vaccine acceptance narratives consisted of four themes: supportive family messages, explicit health care provider endorsement, peer descriptive norms reducing stigma of vaccination, and disease framing (e.g., cancer, HPV) shaping vaccine benefit perceptions. Vaccine resistance narratives consisted of five themes: skepticism of vaccine safety, invoking alternative prevention strategies, articulating stigmatizing HPV messages, overcoming self-efficacy barriers (e.g., cost, availability, time, and fear of parental disclosure), and delay strategies. Common to all decision narratives was that relationship status framed college women's perceptions of HPV susceptibility. Theoretical and practical implications for designing HPV vaccine messages aimed at college-aged women are discussed.
127 citations
TL;DR: A metasynthesis of the 21st-Century qualitative research concerning the self-management of type 2 diabetes concludes that a satisfactory account of diabetes care would pay attention to the “inner” world, while acknowledging the social and political conditions in which diabetes-related experiences unfold.
Abstract: Type 2 diabetes is a metabolic disorder characterized by chronically elevated blood glucose and high risk of comorbidities. In this article we report a metasynthesis of the 21st-Century qualitative research concerning the self-management of type 2 diabetes. We identified 38 relevant articles (sample size range 6 to 175), which were synthesized through a process of iterative reading and theory development. In this literature, authors argued and assumed that diabetes management is influenced by multiple, complex, competing factors, including interpersonal relations, gender, and sociocultural context. Conversely, self-management was sometimes construed as a facet of individual agency and was accepted uncritically, placing accountability for health with patients themselves. We conclude that a satisfactory account of diabetes care would pay attention to the “inner” world, while acknowledging the social and political conditions in which diabetes-related experiences unfold.
112 citations
TL;DR: Qualitative interviews with 132 HIV/HCV-coinfected patients were analyzed to explore how they experience the two layers of stigma and the impact of the hierarchical and nonhierarchical ordering of the two stigmas on patients’ felt and enacted stigmatization is explored.
Abstract: The realization that many persons with HIV/AIDS are subjected to multiple layers of stigmatization because they belong to socially deviant and disenfranchised groups (e.g., injection drug users, racial/ethnic and sexual minorities) accounts for an increasing interest in the phenomenon of stigma layering. The stigma associated with hepatitis C virus (HCV) has also been conceptualized as layered. However, researchers have overlooked the fact that HCV adds a layer to the HIV stigma and vice versa. Qualitative interviews with 132 HIV/HCV-coinfected patients were analyzed to explore how they experience the two layers of stigma. Most participants hierarchically ordered the stigmas associated with each disease and regarded HIV as the more stigmatizing of the two. A small number perceived HIV and HCV as equally stigmatizing. The impact of the hierarchical and nonhierarchical ordering of the two stigmas on coinfected patients' felt and enacted stigmatization is explored and implications for interventions are discussed.
107 citations
TL;DR: The concepts and support associated with the fat-acceptance movement helped participants shift from reactive strategies in responding to stigma to proactive responses to resist stigma and perceived that blogging within the Fatosphere led them to feel more empowered.
Abstract: Obese adults face pervasive and repeated weight-based stigma. Few researchers have explored how obese individuals proactively respond to stigma outside of a dominant weight-loss framework. Using a grounded theory approach, we explored the experiences of 44 bloggers within the Fatosphere--an online fat-acceptance community. We investigated participants' pathways into the Fatosphere, how they responded to and interacted with stigma, and how they described the impact of fat acceptance on their health and well-being. The concepts and support associated with the fat-acceptance movement helped participants shift from reactive strategies in responding to stigma (conforming to dominant discourses through weight loss) to proactive responses to resist stigma (reframing "fat" and self-acceptance). Participants perceived that blogging within the Fatosphere led them to feel more empowered. Participants also described the benefits of belonging to a supportive community, and improvements in their health and well-being. The Fatosphere provides an alternative pathway for obese individuals to counter and cope with weight-based stigma.
104 citations
TL;DR: Improvements over the last several decades have gone a long way toward acknowledging the significant disparities that affect Indigenous people and the role of researchers in addressing this issue, and events that have led to more appropriate research methods in Australia are described.
Abstract: Evidence-based approaches to health care have been difficult to achieve in Indigenous populations across the world, a situation which has contributed to the significant health disparities found in this group. One reason for the inadequacy of evidence-based health interventions is that empirical knowledge tends to be organized around professional disciplines that are grounded in Western ways of knowing. In this article we describe events that have led to more appropriate research methods in Australia, and the resulting changes in the research community. The principles that have guided Australian research policy development might not yet be fully matured, but the improvements we have experienced over the last several decades have gone a long way toward acknowledging the significant disparities that affect Indigenous people and the role of researchers in addressing this issue.
103 citations
TL;DR: The analysis concerns the function of diagnosis from the perspective of personal identity, with particular focus on the status of official diagnosis, as well as community members’ discussions of symptoms and psychiatric syndromes that amount to informal diagnosis or consultation.
Abstract: This article consists of a qualitative analysis of discussion forums in online mental health communities whose members routinely write about diagnosis. The analysis concerns the function of diagnosis from the perspective of personal identity, with particular focus on the status of official diagnosis, as well as community members' discussions of symptoms and psychiatric syndromes that amount to informal diagnosis or consultation. Self-diagnosis sometimes takes the form of recommended "quizzes" and other online quasi-diagnostic tools. Other-diagnosis, in which a third party is discussed by community members, is also considered. We discuss the implications of such online discourse for Internet users themselves as well the challenges for the health and medical professions.
TL;DR: It is demonstrated that acknowledging the role of narrative reconstruction in reflexivity creates more ethical research, and that it is therefore crucial for researchers to more explicitly recognize this.
Abstract: Being reflexive and providing these reflections for public scrutiny is often considered a key element of ethical, rigorous qualitative research. Prevalent conceptualizations of reflexivity, however, need interrogating and sharpening. We aim to contribute to this by examining reflexive practice, and in particular researchers' reflexive accounts, through the lens of the narrative paradigm. Our aim is to demonstrate that acknowledging the role of narrative reconstruction in reflexivity creates more ethical research, and that it is therefore crucial for researchers to more explicitly recognize this. Both authors present an analysis of one particular exchange between interviewer and participant. This analysis highlights that despite our best efforts at "doing reflexivity," both immediately following and when reflecting back on an interview, there are influential factors that escape our gaze. Reflections of the past are particularly imperfect. Without fully recognizing this, we are not utilizing all the tools available for ensuring honest, ethical research.
TL;DR: It is revealed that adolescent survivors might experience an identity paradox when making the transition to “survivor,” which can contribute to their sense of isolation and risk of health-detracting behaviors.
Abstract: Adolescent cancer survivors face psychological effects that can include isolation, poor peer relations, anxiety, depression, and fear of recurrence, which can increase their risk for psychological late effects and poor health posttreatment. The purpose of this exploratory analysis was to understand the experiences of adolescent cancer survivors, with a particular focus on identity, health promotion, and meaning making. In-depth interviews were conducted with 12 adolescent cancer survivors. Constant comparative analysis was used to identify core themes from the data. Findings revealed that adolescent survivors might experience an identity paradox when making the transition to "survivor," which can contribute to their sense of isolation and risk of health-detracting behaviors. Health promotion, prevention, and supportive programs need to be developed for health care professionals to address the isolation and identity transition needs of adolescent cancer survivors.
TL;DR: The emotional stress the authors experienced while coding semistructured, after-death interviews conducted with 38 next of kin of deceased veterans is described to generate an expanded discourse on how qualitative inquiry impacts the emotional well-being of researchers.
Abstract: Qualitative researchers who explore the individual’s experience of health, illness, death, and dying often experience emotional stress in their work. In this article, we describe the emotional stress we experienced while coding semistructured, after-death interviews conducted with 38 next of kin of deceased veterans. Coding sensitive topic data required an unexpected level of emotional labor, the impact of which has not been addressed in the literature. In writing this discussion article, we stepped back from our roles as interviewers/coders and reflected on how our work affected us individually and as a team, and how a sequence of exposures could exert a cumulative effect for researchers in such a dual role. Through this article, we hope to generate an expanded discourse on how qualitative inquiry impacts the emotional well-being of researchers.
TL;DR: It is described that medication administration entailed a complex mixture of varied and often competing demands that temporally structured the nurses’ entire workday and called into question the current emphasis on reducing interruptions as a tactic to decrease medication errors.
Abstract: The medication administration stage of the medication-use process is especially vulnerable to error because errors are least likely to be caught before reaching the patient. Medication administration, however, remains poorly understood. In this article we describe medication administration as observed in an ethnographic study conducted on one medical unit and one surgical unit. A central finding was that medication administration entailed a complex mixture of varied and often competing demands that temporally structured the nurses' entire workday. Articulation work was evident in time management strategies nurses used to handle demands from institutional policies, technical devices, patients, the physical environment, and the medications themselves. The average number of doses of medication per patient was more than double the number policy groups have indicated. Medication administration is not simply the giving of drugs, nor does it have clearly defined temporal boundaries. Because of its inseparability from other nurses' work, medication administration inherently entails interruption, thereby calling into question the current emphasis on reducing interruptions as a tactic to decrease medication errors.
TL;DR: This article examines the construction of self following acquired brain injury from an experience-centered perspective, and presents the processes of delegitimation, invalidation, negotiation, and resistance as crucial aspects of the postinjury construction of personhood.
Abstract: In this article we examine the construction of self following acquired brain injury from an experience-centered perspective. Life history and semistructured interview transcripts collected from four brain injury survivors were analyzed using thematic, syntactic, and deep structure analysis. Though notions of the “lost” or “shattered” self have dominated discussions of personhood in the acquired brain injury literature, we argue that this perspective is a crude representation of the postinjury experience of self, and that aspects of stability, recovery, transcendence, and moral growth are also involved in this process. We highlight the intersubjective nature of the self, and present the processes of delegitimation, invalidation, negotiation, and resistance as crucial aspects of the postinjury construction of personhood. We explore the implications of this complex process of construction of self for grief and bereavement theories, clinical practice, and professional discourse in the area of acquired brain i...
TL;DR: This study used a constructivist grounded theory approach to explore maternal identity negotiations among low-income ethnic minority mothers with postpartum depression (PPD) symptoms and found that mothers experienced their PPD symptoms and poverty as evidence of maternal failure, but also drew on discourses of maternal self-sacrifice, engagement with their children, and pleasure in mothering to construct a positive sense of self.
Abstract: In this study, we used a constructivist grounded theory approach to explore maternal identity negotiations among low-income ethnic minority mothers with postpartum depression (PPD) symptoms. Nineteen mothers were recruited from Women, Infant, and Children clinics located in two coastal cities in the United States to participate in in-depth interviews. Constant comparative analysis revealed that mothers experienced their PPD symptoms and poverty as evidence of maternal failure, but also drew on discourses of maternal self-sacrifice, engagement with their children, and pleasure in mothering to construct a positive sense of self. To negotiate these conflicting versions of self, mothers positively appraised their own mothering in relation to stigmatized "others" and framed their depression as a foreign entity, one that stood outside of a core, authentic sense of self. Through our consideration of the intersecting contexts of poverty and postpartum depressive symptoms, this article adds to the literature on PPD and mothering.
TL;DR: A range of unmet psychosocial and behavioral needs among young adult cancer survivors is highlighted, and information can be used to develop interventions for this population.
Abstract: Behavioral interventions for cancer survivors have historically targeted older adults or young adult survivors of childhood cancer. In this study, 18- to 39-year-olds diagnosed with cancer during young adulthood were interviewed to identify the types of behavioral and psychosocial programs needed. These young adult cancer survivors were also asked to identify potential barriers to program utilization. Participants expressed interest in programs targeting physical activity, relaxation, emotional support, provision of cancer-related and other information, and nutrition/weight loss. Emergent themes included the importance of choice, flexibility, convenience, and similarity to other program participants. Barriers to participation included practical barriers (e.g., limited time), lack of awareness of programs, health issues (e.g., fatigue), and psychosocial barriers (e.g., low motivation). Results highlight a range of unmet psychosocial and behavioral needs among young adult cancer survivors. This information can be used to develop interventions for this population.
TL;DR: This article investigates a new avenue of support that is gaining popularity in the public health sector: the Internet and examines messages in an asynchronous online chat room for new fathers to reveal how fathers themselves requested, offered, and received social support.
Abstract: Men are becoming increasingly aware of and keen about the promises of involved fathering, and there is growing recognition of the need to support fathers, especially in the postnatal period. However, there is limited evidence of how best to offer this support. In this article, we investigate a new avenue of support that is gaining popularity in the public health sector: the Internet. Using qualitative methods, we examine messages in an asynchronous online chat room for new fathers to reveal how fathers themselves requested, offered, and received social support. Features of their communication style included humor and self-disclosure. An emergent, overarching purpose of their communications was to make fathering more "visible," and to encourage each other to engage confidently and wholeheartedly in fathering.
TL;DR: To ensure that research participation is accessible to all, researchers must employ flexible recruitment methods that permit adaptation to specific needs arising out of health status, level of involvement with services, culture, and socioeconomic status.
Abstract: In this article we reflect on the recruitment of research participants to two related studies of experiences of mental health problems in Black and minority ethnic communities in the United Kingdom. A total of 65 people were recruited via three main strategies: the employment of bicultural recruiters, intensive information sharing about the studies, and work through local community groups. Three main issues seemed to affect recruitment: gatekeepers’ attitudes, the (non)payment of participants, and reciprocal arrangements with local community groups. The type of strategy employed resulted in recruits with differing characteristics (although our sample was too small to draw generalizable conclusions). We conclude that to ensure that research participation is accessible to all, researchers must employ flexible recruitment methods that permit adaptation to specific needs arising out of health status, level of involvement with services, culture, and socioeconomic status. Systematic research into this part of the research process is needed.
TL;DR: A large-scale narrative study in which specific qualitative methods were combined to fit research aims, stories elicited, and emergent questions in the analysis process describing the trauma recovery process is described.
Abstract: Multiple narrative perspectives can guide narrative research. The complexity of health narratives presents a significant challenge. Trauma recovery accounts are health narratives demonstrating successes as well as struggles. In this article, I describe a large-scale narrative study in which specific qualitative methods were combined to fit research aims, stories elicited, and emergent questions in the analysis process. Under my direction, an interdisciplinary team conducted this constructivist, feminist, narrative study describing the trauma recovery process. The study was focused on success or thriving in women surviving childhood maltreatment. I took an advocacy stance in favor of participants' interests, as is commensurate with a critical feminist standpoint. Through initial analyses the research team constructed a trauma recovery process termed "becoming resolute." Subanalyses were focused on key relationships, life trajectories, self-strategies, and perceptual changes. My purpose is to explain the various kinds and levels of analysis used here to provide options for others studying recovery narratives.
TL;DR: The definitions of community health, focus groups, and dissemination that are often used in community-based research are assessed to introduce an application of dialogical action that goes beyond traditional focus group methodology to promote the creation of an evolving and dynamic dialogue among campus and community stakeholders.
Abstract: Proponents of community-based research advocate for the active involvement and engagement of community members, citing improved construct validity, intervention efficacy, and accountability. However, to create the conditions in which expertise is mutually constructed and in which no one is the object of research, a reconsideration of the fundamental ethos of community involvement and engagement is required. In this article, we seek to accomplish two goals: (a) to briefly assess the definitions of community health, focus groups, and dissemination that are often used in community-based research; and (b) to introduce an application of dialogical action that goes beyond traditional focus group methodology to promote the creation of an evolving and dynamic dialogue among campus and community stakeholders. An urban case study is presented.
TL;DR: Findings indicate that ESRD has a profound impact on children, and depict a multifaceted, dynamic perspective engendered in tensions as children and adolescents grapple with adversity yet experience personal growth and resiliency.
Abstract: Relatively little is known about how children perceive and manage end-stage renal disease (ESRD) in daily life. To address this gap in the literature, the experiences and perceptions of children with ESRD were examined in this study. Study design comprised ethnographic interviews with 25 children and adolescents ages 7 to 18 years. Semistructured interviews were audiotaped, transcribed verbatim, and subjected to content analysis. Participants received a range of ESRD treatments including transplantation and dialysis. Findings indicate that ESRD has a profound impact on children. They described a range of challenges and experiences including not feeling "normal"; developing ESRD knowledge; frequent absence from school; gaining responsibility for ESRD care; relying on family, friends, and health care providers; and adjusting despite adversity. These findings depict a multifaceted, dynamic perspective engendered in tensions as children and adolescents grapple with adversity yet experience personal growth and resiliency. Implications and recommendations for clinical practice and research are discussed.
TL;DR: Using the extensive data involving both the practices and practice implementation, positive deviance was used to create a comprehensive list of practices to develop interventions for individuals to control their weight.
Abstract: Based on positive deviance (examining the practices of successful individuals), we identified five primary themes from 36 strategies that help to maintain long-term weight loss (weight control) in 61 people. We conducted in-depth interviews to determine what successful individuals did and/or thought about regularly to control their weight. The themes included weight-control practices related to (a) nutrition: increase water, fruit, and vegetable intake, and consistent meal timing and content; (b) physical activity: follow and track an exercise routine at least 3x/week; (c) restraint: practice restraint by limiting and/or avoiding unhealthy foods; (d) self-monitor: plan meals, and track calories/weight progress; and (e) motivation: participate in motivational programs and cognitive processes that affect weight-control behavior. Using the extensive data involving both the practices and practice implementation, we used positive deviance to create a comprehensive list of practices to develop interventions for individuals to control their weight.
TL;DR: It is concluded that abnormal NBS results that involve genetic testing can have psychosocial consequences that affect entire families.
Abstract: This study was designed to develop a framework for understanding parents' perspectives about the psychosocial consequences of false-positive newborn screening (NBS) results for cystic fibrosis (CF). Through content analysis of interviews with 87 parents of 44 infants, we found that receipt of genetic information through NBS affected parents on intrapersonal and interpersonal levels within a relational family system. Repercussions included wondering about test accuracy, the child's health, and the future; gaining new perspectives and strengthening relationships; questioning paternity; wondering if other relatives had CF/were carriers; searching for the genetic source; sharing genetic information; supporting NBS; and feeling empathy for parents of affected children. We concluded that abnormal NBS results that involve genetic testing can have psychosocial consequences that affect entire families. These findings merit additional investigation of long-term psychosocial sequelae for false-positive results, interventions to reduce adverse iatrogenic outcomes, and the relevance of the relational family system framework to other genetic testing.
TL;DR: How ethnically diverse women dealt with the messages of the dominant White society’s obsession with thinness is examined, and whether it affected their perceptions of an ideal body image is examined.
Abstract: In this article, I present the findings from an ethnographic study of 18 women college students living in the northeastern United States. I examine how ethnically diverse women dealt with the messages of the dominant White society’s obsession with thinness, and whether it affected their perceptions of an ideal body image. From the analysis of the interviews, I identified and extracted several themes related to ethnicity, aesthetic body ideals, body dissatisfaction, and disturbed eating. Grounded in the women’s narratives, I found that ethnically diverse women coming of age in American society experience anxieties and emotional stress as they related to others in their daily lives. Their stories shed light on how the body is a vehicle for social mobility and is used by women from marginalized identities to strategically negotiate social inequalities embedded in daily social relationships and interactions that more privileged women do not encounter.
TL;DR: The results highlight how the particular combination of the rarity of the disease, its lifelong and hereditary nature, and its disfiguring impact on the skin differentiate epidermolysis bullosa from other chronic conditions.
Abstract: Epidermolysis bullosa (EB) is a disease in which the skin blisters in response to minimal friction, causing painful wounds. Despite the potentially severe nature of epidermolysis bullosa, research on the psychosocial issues is scarce. The aims of the study were to explore the psychosocial impact of epidermolysis bullosa on affected adults and to identify associated support needs. We collected data using semistructured interviews and employed inductive thematic analysis to organize and analyze them. Three main themes—beliefs about containing the impact of EB, understandings of the disease, and the disabling impact of EB—describe the ways in which living with EB influences the daily lives of participants at intraindividual, interindividual, and sociocultural levels. The associated support needs ranged in type and intensity, from a preference for brief, skills-based interventions and the facilitation of peer support through to longer-term specialist psychological support. The results highlight how the particular combination of the rarity of the disease, its lifelong and hereditary nature, and its disfiguring impact on the skin differentiate epidermolysis bullosa from other chronic conditions.
TL;DR: A grounded theory study with 22 BRCA1/2 mutation-carrier women to understand how women make decisions about cancer screening and risk-reducing surgery and provides theoretical insights that could inform the provision of decisional support to BRCa1/ 2 carriers.
Abstract: Women who carry BRCA1 or BRCA2 (BRCA1/2) gene mutations have up to an 88% lifetime risk of breast cancer and up to a 65% lifetime risk of ovarian cancer. Strategies to address these risks include cancer screening and risk-reducing surgery (i.e., mastectomy and salpingo-oophorectomy). We conducted a grounded theory study with 22 BRCA1/2 mutation-carrier women to understand how women make decisions about these risk-reducing strategies. Preserving the self was the overarching decision-making process evident in the participants’ descriptions. This process was shaped by contextual conditions including the characteristics of health services, the nature of hereditary breast and ovarian cancer risk-reduction decisions, gendered roles, and the women’s perceived proximity to cancer. The women engaged in five decision-making styles, and these were characterized by the use of specific decision-making approaches. These findings provide theoretical insights that could inform the provision of decisional support to BRCA1...
TL;DR: Three overarching themes emerged from the data, which captured influences on optimal pain practices in the NICU, including a culture of collaboration and support for evidence-based practice, threats to autonomous decision making, and complexities in care delivery.
Abstract: In this qualitative descriptive study, we explored health care professionals' perceptions of the influence of context (i.e., organizational culture, structure, resources, capabilities/competencies, and politics) on evidence-based pain practices. A total of 16 focus groups with 147 health care professionals were conducted in three neonatal intensive care units (NICUs) in central and eastern Canada. Three overarching themes emerged from the data, which captured influences on optimal pain practices in the NICU, including (a) a culture of collaboration and support for evidence-based practice, (b) threats to autonomous decision making, and (c) complexities in care delivery. These results were consistent with theoretical conceptualizations of how context influences practice, as well as recent empirical research findings. This study supports the importance of context in shaping evidence-based practices by health care professionals in the management of pain in the NICU.
TL;DR: Analysis of the recorded and transcribed statements revealed that most participants had no clear or defined expectations concerning appropriate treatment and firmly believed that medical treatment would help them and considered their current suffering to be the result of a multitude of stressors impacting their lives over long periods of time.
Abstract: Traumatized migrants increasingly burden health care services in industrialized countries. These patients usually suffer from a broad range of physical and psychological symptoms, with assessment and treatment being complicated and often unsatisfactory. A large potential for misunderstandings between clinicians and traumatized individuals is not only because of a language barrier; very little is known about the concepts of illness and treatment expectations in these patients. We performed semistructured interviews with 13 traumatized migrants, focusing on their concepts of illness and expectations concerning medical treatment. An analysis of the recorded and transcribed statements revealed that most participants had no clear or defined expectations concerning appropriate treatment. The patients knew very little about psychotherapy, and usually had negative prejudices. Nevertheless, participants firmly believed that medical treatment would help them and considered their current suffering to be the result of a multitude of stressors impacting their lives over long periods of time. The patients did not identify single traumatic events as the causes of their complaints. The prevailing concepts of illness among traumatized migrants can be characterized as multifactorial and psychosocial.