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Adolescents with type 1 diabetes (T1DM) need stable self-care routines for good metabolic control to minimize future cardiovascular health complications. These routines are demanding, and might be particularly challenging in underprivileged groups. The aim of this study was to gain in-depth knowledge on the experience of adolescents with T1DM and a non-Swedish background regarding factors that might influence their ability to take care of themselves; in particular, factors that might influence diabetes management routines, their social situation, and the support they receive from caregivers. We interviewed 12 adolescents with T1DM and minority backgrounds. The results indicated resources and constraints in the adolescents’ social context and in the health care organization. The adolescents developed conceptions that helped to explain and excuse their self-care failures, and their successes. These findings highlight the importance of integrating T1DM as part of the individual’s personal prerequisites. We discuss implications for the organization of diabetes care for adolescents.
In this article, we analyze qualitative data from a purposeful sample of limited English proficiency (LEP) asthma health caregivers. We used ethnically concordant, semistructured, in-depth Spanish-language interviews and a follow-up focus group to explore issues related to communication during pediatric asthma encounters in medical settings. Inductive coding of Spanish transcripts by a bilingual research team was performed until thematic saturation was reached. Several key findings emerged. LEP caregivers encountered significant asthma burdens related to emotional stress, observed physical changes, and communication barriers. Language-discordant communication and the use of ad hoc interpreters were common. This finding is complex, and was influenced by perceptions of interpreter availability, delays in care, feelings of mistrust toward others, and individual emotional responses. Language-concordant education and suitable action plans were valued and desired. We discuss a revealing depiction of the LEP caregiver experience with asthma health communication and recommend areas for further inquiry.
Living with end-stage renal disease is challenging and requires a great deal of self-management, but little is known about the experiences of patients and staff around the subject. We held six focus groups in three hemodialysis units, each unit hosting 1 staff and 1 patient focus group. A total of 15 staff members and 15 patients participated. We employed thematic analysis using a priori and emerging codes. Five key themes emerged: challenges, enablers, complex balancing acts, good patient/bad patient, and the hemodialysis unit as a family. We explored the family metaphor further through the work of Bourdieu, but concluded that relationships in the hemodialysis unit most closely fit the concept of sociological ambivalence. We present an explanatory framework around inherent tensions characterizing relationships within the hemodialysis unit and highlight implications for facilitating self-management and developing collaborative approaches to care.
The therapeutic potential of nonpharmacologic interventions using biographical approaches at the end of life (EoL) is being increasingly recognized, but less attention is paid to processes impeding realization of this potential. In this article, Swedish and Australian researchers reflect on and problematize experiences using one biographical approach, dignity therapy (DT), in EoL care in Sweden. We use this as an example, focusing on critical examination of the process of applying DT in practice, examining frictions experienced in recruiting participants, collecting the data, and creating a biography. We discuss issues regarding agency, which became evident in the recruitment process and choices made about participation, and the power differentials manifested in the interactive process of eliciting stories and crafting them into a final product. We also raise salient questions about how research and practice with biographical approaches in EoL care might better build on and further existing knowledge to better reflect the complexities of everyday life.
Mandatory presurgical, behavior-induced weight loss, although not standard, is a relatively common practice among bariatric surgical clinics. We explore the patient’s experience of this practice using phenomenology. We gathered experiential accounts from 7 individuals waiting to have the procedure at a large publically funded clinic in western Canada. In writing this article, we focused on four phenomenological themes: “just nod your head and carry on”—silencing through the ideal; waiting and weighing—promoting weight consciousness to the weight conscious; paying for surgical approval through weight loss; and presurgical weight loss and questioning the need for weight loss surgery altogether. We contrast the experiential findings with the clinical literature to question the impact and possible (unintended or unexpected) effects the practice might have, particularly on patients’ lives. We situate this article within a larger discussion about the possible contribution of experiential knowledge to clinical guidelines, practices, and pedagogies.
Shifts in family structure have affected age norms about both teenage childbearing and reproductive sterilization, but we lack research examining how childbearing norms are connected across the reproductive life course. Drawing on interviews from 40 low-income women in Colorado, we explored linkages between early childbearing and the desire for early sterilization. Specifically, we examined two narratives women use to negotiate competing norms throughout the reproductive life course. The low-income women in our study characterized their teenage childbearing experiences negatively and justified them using a “young and dumb” narrative. Women also asserted that reversible contraceptives do not work for them, using a “hyper-fertility” narrative to explain both their early childbearing and their desire for early sterilization. Our results illustrate the influence of mainstream social norms about childbearing timing on low-income women’s lives and provide evidence of how women use narratives to explain and justify their violation of childbearing norms.
Although researchers have identified the benefits of physical activity on well-being, there is little evidence concerning the effects of nature-based physical activity. We investigated the effect of one nature-based activity—surfing—on the well-being of combat veterans experiencing posttraumatic stress disorder (PTSD). We conducted interviews and participant observations with a group of combat veterans belonging to a United Kingdom-based veterans’ surfing charity. Our primary analytical approach was dialogical narrative analysis. Based on our rigorous analysis and findings, we suggest that surfing facilitated a sense of respite from PTSD. Respite was a fully embodied feeling of release from suffering that was cultivated through surfing and shaped by the stories veterans told of their experiences. We significantly extend previous knowledge on physical activity, combat veterans, and PTSD by highlighting how nature-based physical activity, encapsulated in the conceptual notion of the “blue gym,” can promote well-being among combat veterans.
Self-management interventions are increasingly offered to people with chronic health conditions. However, there has been limited exploration of how applicable such an approach is in early stage dementia. In this study we explored the views of people with dementia and family caregivers on the use of self-management in dementia. We conducted semistructured interviews with 13 people with early stage dementia and 11 caregivers. We analyzed transcripts using thematic analysis. We found eight themes in the analysis, and they indicated that self-management occurs in the context of peoples’ family and social relationships as well as relationships with professional services. Six of the themes involved barriers to and facilitators of self-management. It is evident from these findings that people with dementia and caregivers use self-management techniques. Their use of such techniques could be enhanced by the development of interventions designed to help people with dementia to develop their self-management skills.
Increasingly, qualitative health researchers might consider using social media to facilitate communication with participants. Ambiguity surrounding the potential risks intrinsic to social media could hinder ethical conduct and discourage use of this innovative method. We used some core principles of traditional human research ethics, that is, respect, integrity, and beneficence, to design our photo elicitation research that explored the social influences of drinking alcohol among 34 underage women in metropolitan South Australia. Facebook aided our communication with participants, including correspondence ranging from recruitment to feeding back results and sharing research data. This article outlines the ethical issues we encountered when using Facebook to interact with participants and provides guidance to researchers planning to incorporate social media as a tool in their qualitative studies. In particular, we raise the issues of privacy and confidentiality as contemporary risks associated with research using social media.
Keyword analysis has been championed as a methodological option for expanding the insights that can be extracted from qualitative datasets using various properties available in qualitative software. Intrigued by the pioneering applications of Clive Seale and his colleagues in this regard, we conducted keyword analyses for word frequency and “keyness” on a qualitative database of interview transcripts from a study on cancer communication. We then subjected the results from these operations to an in-depth contextual inquiry by resituating word instances within their original speech contexts, finding that most of what had initially appeared as group variations broke down under close analysis. In this article, we illustrate the various threads of analysis, and explain how they unraveled under closer scrutiny. On the basis of this tentative exercise, we conclude that a healthy skepticism for the benefits of keyword analysis within a qualitative investigative process seems warranted.
Researchers use Internet technology for data collection in qualitative studies. In the literature there are published accounts of synchronous (real-time) and more commonly, asynchronous (not-real-time) focus group data collection methods supported by Internet technology in the form of email correspondence, LISTSERVs, discussion boards, and chat rooms. Real-time audiovisual Web conference technology offers qualitative researchers a promising alternative means to carry out focus groups. In this methodological article I describe how I used Web conference technology to host online focus groups for a qualitative study about job integration experiences of travel nurses geographically dispersed across the United States. I describe lessons learned from the use of this innovative method for qualitative data collection, including a brief overview about the use of dictation software for transcription. This new knowledge is useful to researchers considering Web conference technology to carry out focus group data collection in qualitative research.
Although there is increased understanding of language barriers in cross-language studies, the point at which language transformation processes are applied in research is inconsistently reported, or treated as a minor issue. Differences in translation timeframes raise methodological issues related to the material to be translated, as well as for the process of data analysis and interpretation. In this article we address methodological issues related to the timing of translation from Portuguese to English in two international cross-language collaborative research studies involving researchers from Brazil, Canada, and the United States. One study entailed late-phase translation of a research report, whereas the other study involved early phase translation of interview data. The timing of translation in interaction with the object of translation should be considered, in addition to the language, cultural, subject matter, and methodological competencies of research team members.