Qualitative Health Research最新文献

Research on the lived experiences of HIV survivors, including young people living with HIV, has primarily emphasized broader sociocultural concerns, such as stigmatization and cultural attitudes toward sexuality and gender, while giving less attention to the interconnectedness of these issues with the mental well-being of those affected by the illness. This study, drawing on relational ethnography including observations and interviews at four antiretroviral-administering healthcare facilities in Enugu State, southeast Nigeria, explores how young people living with HIV strive toward viral suppression and how they develop collaborative psychosocial support along with the global efforts in eradicating the HIV epidemic. We found that, in and between themselves, young people living with HIV weave for themselves a network of relationships, though discreetly, to foster and encourage survivorship. Such relatedness, where mutual trust and support have emerged and rebuilt HIV survivors' faith in a livable life, forms what we conceptualize as "sero-kinship." That is, sero-kinship, which focuses on how people create and change meanings in their everyday lives that ultimately contribute to controlling HIV and treatment management, forms an essential foundation on which a life with HIV becomes thinkable, bearable, then manageable, and acceptable.

The aim of this paper is to provide foundational work to standardize the conceptual definition of what I refer to as symptom invalidation by using invalidating environments and illness representations as guiding conceptual frameworks. Mixed deductive-inductive thematic analysis was used to analyze survey responses to an open-ended question gauging an invalidating interaction patients experienced with a clinician among 1038 patients with endometriosis. Dissimilarity in illness representations between patients and clinicians, as perceived by patients, occurred with feelings of invalidation. Invalidation was experienced in relationship to all identified domains of illness representations including how clinicians communicated the diagnosis (identity label), the internal (internal cause) and/or external (external cause) nature of the cause, clinicians' understanding of the timeline (timeline) and consequences (consequences), and clinicians' understanding of control over the symptoms via the efficacy of patients (self-efficacy) and coping procedures (response efficacy). Inductive analysis revealed invalidation can also be related to how clinicians communicate judgments of whether patients are presenting with ulterior motives (secondary gains). Clinicians' actions appear to compound experiences of invalidation by not having symptoms investigated (investigative experiences). Invalidating environments and illness representations serve as effective conceptual frameworks for providing a conceptual definition of symptom invalidation.

Health professionals/clinicians interview people regularly as part of their role. However, a qualitative research interview differs considerably to a clinical interview. If clinicians approach qualitative research interviewing based on their expertise in clinical interviewing, it could cause insufficiencies in qualitative data generation. In this reflection article, we, a team of four experienced clinical occupational therapists with no previous experience in qualitative research interviewing, share our experiences while learning to become qualitative research interviewers before undertaking our first qualitative research project. We engaged in self-directed reading, formal training on qualitative interviewing, and practice interviews and used peer feedback and reflection to prepare ourselves to conduct qualitative interviews. We drew upon the work-role transitions theory to work through our adjustment to the new role. Although we set out to "switch hats" as the research topic itself was not clinical, interviewing people on health-related topics will mean bringing our clinical instincts into our research role, while still recognizing the difference between a clinical and research interview. This article can inform experienced clinicians/novice qualitative researchers as they develop this new skillset.

The past decades have seen large numbers of Somali women migrate across the globe. It is critical for healthcare workers in host countries to understand healthcare needs of Somali women. The majority of Somali female migrants experience female genital cutting (FGC). The most common type in Somalia is Type 3 or infibulation, the narrowing of the vaginal introitus. Deinfibulation opens the introitus to reduce poor health outcomes and/or allow for vaginal births. In this study, we explored the perspectives of Somali women living in the United States about deinfibulation. We recruited 75 Somali women who had experienced FGC through community-based participatory research methods. Bilingual community researchers conducted qualitative interviews in Somali or English. University faculty and community-based researchers coded data together in a participatory-analysis process. We identified four themes. (1) Personal Views: participants reported positive attitudes toward deinfibulation and varied on the appropriateness of deinfibulation before marriage. (2) Benefits: identified benefits included alleviation of health problems; improved sexual health, in particular reduction or prevention of sexual pain; and reclamation of body and womanhood. (3) Barriers: these included associated stigma and lack of knowledge by providers. (4) Decision-Making: most reported that husbands, healthcare providers, and elder female community members may provide advice about if and/or when to seek deinfibulation, though some felt deinfibulation decisions are solely up to the impacted woman. An ecological framework is used to frame the findings and identify the importance of healthcare workers in assisting women who have been infibulated make decisions.

The life experiences of children with cancer and their parents as individuals have been well documented in literature. However, little is known about their experiences as child-parent dyads in Pakistan regarding these children's quality of life. Thus, the study was conducted in the context of the family-centric society of Pakistan. In-depth interviews were conducted with 28 participants (14 child-parent dyads), comprising 9 female and 5 male children receiving cancer treatment and 8 mothers and 6 fathers (primary caregivers). All the participants were Muslims and hailed from diverse ethnic backgrounds, and most belonged to middle socioeconomic backgrounds. Thematic analysis was performed using Braun and Clarke's (2006) framework, which revealed four themes: (1) Stress, Fears, and Optimism; (2) Reactions to Restrictions; (3) Adaptation and Coping; and (4) Support Structure and Mechanisms. The findings indicated that children's and parents' daily lives were affected in various ways during the children's cancer journey. They faced several challenges which impacted their well-being. Particularly, the children considered their symptoms as restrictions in the way of carrying out their routine lives. However, children and parents also elaborated on using different coping strategies, such as play, reminiscing the past, incorporating religious practices into their daily routines, and keeping a family-centred approach towards the child's care. The parents also recommended that cancer-specialised services and support groups should be accessible. Conclusively, these findings are useful for healthcare providers in giving family-centred care to afflicted families and devising innovative interventions that address the needs of children with cancer and improve their quality of life.

Mexicans who migrate to the United States endure significant stressors related to the migration process and social and environmental conditions of life in the United States. Given that chronic stress exposure has been linked to the onset of health conditions, these ecological factors may expose them to increased risk for poor health. However, Mexicans have many positive health outcomes compared to those monitored nationally, making it crucial to understand possible sources of resilience in this population. Here, we investigate Mexicans' lay health knowledge in response to stress as a possible source of health-related resilience. Health knowledge is considered a central facet of practical and traditional knowledge as well as adaptive modes of intelligence and has a tangible impact on health. Using an ethnographically grounded community-based participatory research design informed by the theory of embodiment, our hybrid team of bilingual university and community-based researchers interviewed Mexican-origin residents (N = 30) living in rural southwestern Arizona about how they experienced and responded to stress and incorporated it into their etiological frameworks. Thematic analysis revealed that participants paid close attention to how stress presented itself in their bodies, which informed their understanding of its potentially harmful health impacts and motivated them to employ multiple stress reduction strategies. Our results highlight the breadth of Mexicans' lay health knowledge, thereby challenging dominant narratives about low rates of health literacy in this population. Findings can be harnessed to optimize potential health protective effects in home and community settings as well as to inform preventive and clinical interventions.

Child life specialists are clinically trained and educated healthcare professionals who work in both healthcare environments and the community to address the needs of ill children and their families. However, child life specialists have previously reported potential for their role, responsibilities, and scope of practice to be misunderstood by their clinical colleagues. Using a narrative methodology, this paper presents the composite narrative of Diane, whose story encompasses the stories of the four child life specialists working in adult oncology environments in Ontario, Canada. Diane's narrative is a counter-story, which counters common assumptions, beliefs, and attitudes about child life specialists. Through spending significant time narrating the multitude of tasks that are encompassed within her scope of care, Diane reaffirms her identity as a valuable member of an interprofessional adult oncology team and counters infantilizing assumptions that she is merely a babysitter or child entertainer. Her story highlights how, while the introduction of child life specialists to adult healthcare environments is new, the work they do is of great benefit to families and their children. The lack of understanding from clinical colleagues of the role of child life specialists, however, hinders not only the development of relationships between colleagues, but also the care for these families.

Mobile health (mHealth) interventions are increasingly used to address the challenges of living with HIV and engaging with antiretroviral therapy. A wealth of evidence supports the efficacy of mHealth in supporting living with HIV. Yet, there is a dearth of evidence on how mHealth improves outcomes, which features are effective, and why these work in a particular setting. This study uses stakeholder views, including patients, providers, peer supporters, counsellors, and program directors, to conceptualize how specific mHealth features could interact with contexts of living with HIV and mechanisms that shape engagement with treatment. The study is part of an ongoing research project on engagement with HIV care in Iran. We draw on the perspectives of recently diagnosed and more treatment-experienced patients and their providers, using purposive sampling, conducting 9 focus group discussions with a total of 66 participants, in addition to 17 interviews. Our findings suggest that mHealth designs that feature provider connection, proactive care, and privacy and personalization are expected to dilute the harsh contexts of living with HIV. We build on previously identified socioecological pathways that disrupt antiretroviral therapy in Iran and find that mHealth can enhance the relation between the health system and patients. Our findings suggest that personalized mHealth features and provisions can partially mitigate the compounded impacts of harsh socioecological pathways that impede treatment success in Iran. Our social constructivist study was augmented with realist-informed analysis and could have transferability to similar contexts that trigger similar mechanisms of treatment disruption.

Aboriginal Australians experience a high prevalence of chronic obstructive pulmonary disease (COPD), with high rates of potentially preventable hospitalisations. However, little is known about Aboriginal peoples' experiences of living with COPD and how they navigate health care systems. This study used thematic analysis and Aboriginal methodology to explore Aboriginal peoples' lived experiences of COPD, their health care journey from receiving a diagnosis of COPD to the clinical management, and the impact of COPD on their daily lives. We conducted in-depth semi-structured interviews over a 6-month period with 18 Aboriginal adults diagnosed with COPD from four Aboriginal Community Controlled Health Services (ACCHS) in New South Wales, Australia. Reflexive thematic analysis was employed to ensure rigour. The findings revealed deeply personal and reflective stories shaped by historical, social, and cultural realities of Aboriginal peoples living with COPD. Four themes were identified characterising their experiences. Based on the findings, the following guidance is provided on future COPD care for Aboriginal peoples: Better alignment of existing COPD management with Aboriginal peoples' cultural contexts and perspectives to improve access to culturally safe care; Increased funding for ACCHS to enhance COPD management, such as early detection through case finding and access to ACCHS-led pulmonary rehabilitation; Engaging family members in COPD management and providing culturally centred COPD education that facilitates discussions and builds health literacy and self-management skills; Implementing health promotion initiatives to increase awareness and counteract fear and shame to improve early COPD detection.

Autoethnography is an increasingly used method to promote individual and group reflexivity in research, not the least in healthcare. However, autoethnography's uptake among practitioners is impeded by the fact that it has not been adequately adapted to practitioner settings from its academic origins. This article analyzes the experience of a research team comprised of practitioners/surgeons and social scientists using primarily oral-based autoethnographic practices to promote reflexive collaboration in a longitudinal research and innovation project on selection and training of surgical residents. Based on our case of innovative adaptation and application of autoethnography, which we term autoethnorality, several modifications in autoethnographic practice are suggested to make it more amenable to practitioner settings. These include adopting the collaborative and analytic forms of autoethnography and developing oral-based modalities for autoethnographic practice. The case also shows how these strategic choices along with successive adoption of autoethnographic practices can facilitate the resolution of tensions deriving from the differing timeframes, skillsets, and interests of practitioners on the one hand and academic researchers on the other, as well as paradigmatic differences in theory of science between the medical and social sciences. A table summarizing the advantages and disadvantages of different strategic choices and adaptations regarding autoethnography along with actionable recommendations is presented.