Qualitative Health Research最新文献

Empathy is one of the important components in the patient-nurse relationship. The aim of the study was to explain the culture of empathic care in intensive care unit (ICU) nurses. The present focused ethnographic study was conducted in the cardiac surgery ICU in Tehran. Three methods of observation, interview, and review of existing documents were used to collect data. From data analysis, three cultural models, "Predominance of task-based care over emotion-based care," "Empathy and lack of empathy, two ends of the spectrum of the nurse-patient relationship," and "Empathy, an interactive and reciprocal process," were extracted. The results showed that empathy creates a caring environment where nurses not only understand their patients but also relate to them, and both are affected by it. Policymakers should consider removing barriers as a means of empowering nurses to provide empathic care.

The demands and costs of health care resulting from increasingly ageing populations have become a major public health issue in the United Kingdom and other industrially developed nations. Concern with cost containment and shortage of resources has prompted a progressive shift in responsibility from state provision of care to individual patients and their families, and from the institutional setting of the hospital to the domestic home. Under the guise of choice and patient centredness, end-of-life care is framed within a discourse of the 'good death': free from distress and discomfort and accompanied by significant others in the preferred place, usually assumed to be home. The promotion of the 'good death' as a technical accomplishment enabled by pre-emptive discussion and advance care planning has sidelined recognition of the nature and significance of the pain and suffering involved in the experience of dying. There has been little research into the disparity between policy and professional assumptions and the lived reality of end of life. In this paper, we present findings from a qualitative study of how terminally ill patients, bereaved family members, and members of the public understand, anticipate, and experience death and dying. These findings contribute to an important and timely critique of the normative idealisation of death and dying in health policy and practice, and the need to attend closely to the real-world experiences of patients and the public as a prerequisite for identifying and remedying widespread shortcomings in end-of-life care.

Healthcare professionals play a crucial role in addressing the concerns of vaccine-hesitant parents since they form a trusted source for vaccine-related information. An increasing body of evidence suggests that healthcare professionals are faced with complexities when navigating the sensitive topic of parental vaccine hesitancy, as they balance their own vaccine- and context-specific concerns with institutional and societal pressures to vaccinate. Furthermore, health choices, such as parental choices for childhood vaccination, are often linked to moralisation. Given the emphasis on effective communication with vaccine-hesitant parents in the patient-centred care literature, it is important to consider healthcare professionals' interpretations of parental vaccine hesitancy. Hence, a deeper understanding of how healthcare professionals make sense of, and moralise, childhood vaccination can help us understand how moralisation might appear in their communication with hesitant parents (in)directly. Drawing on a critical social-psychological framework for discourse analysis, this study analyses 39 semi-structured interviews with healthcare professionals in Flanders, Belgium, and presents the discursive patterns articulated by healthcare professionals on parental vaccine hesitancy. The findings elucidate how healthcare professionals perpetuate, or resist, moral discourse in their accounts of vaccine hesitancy by constructing five different interpretative repertoires, that is, a "good" or "bad" parenting repertoire, a freedom of choice repertoire, an individual risk-benefit repertoire, a public health repertoire, and an accessibility repertoire. Our study highlights the complexities healthcare professionals experience in negotiating vaccine hesitancy, as their understandings of vaccine hesitancy are affected by, and contribute to, existing moral dilemmas and dominant discourses surrounding health and parenting.

Young adults thrust into the role of caregiving for parents with young-onset dementia (YOD) face unique challenges during their formative years. While existing research acknowledges the crucial role of young adult caregivers, a gap persists in understanding how this group experiences and redefines their identity amidst these circumstances, along with the psychological and societal challenges encountered. This knowledge deficit hinders the identification of suitable social support, adversely affecting the personal growth and well-being of these young adult caregivers. In this single-case study, we used a combination of a semi-structured interview and photovoice to explore the journey of a 19-year-old caregiver, Alice, whose mother had been diagnosed with dementia in the preceding 3 years. Through this unique perspective, we aimed to illuminate how caregiving for a mother with YOD may profoundly redefine familial roles and relationships. Over 3 months, Alice captured significant life moments through photography, selecting meaningful images for bi-weekly meetings. These images served as pivotal themes, triggering in-depth conversations during subsequent interviews to provide nuanced insights into her life experiences. Findings reveal four major themes faced by a young caregiver: (1) challenges adapting to an unexpected role, (2) navigating the complex emotional terrain of losing a loved one to YOD, (3) prioritizing the well-being of the healthy parent, and (4) expressing a profound desire for both informal and formal support. These results underscore the intricate identity and emotional challenges faced by young adult caregivers, emphasizing the urgency of addressing their unique needs through family-centered systemic support services.

This article provides original insight into women's experiences of adulthood diagnoses of attention deficit hyperactivity disorder (ADHD) and autism. Research exploring experiences of adulthood diagnoses of these conditions is emerging. Yet, there is no research about the gendered experiences of an adulthood combined ADHD and autism (AuDHD) diagnosis. This article addresses this gap through interpretative phenomenological analysis of email interviews with six late-diagnosed AuDHD women revealing the complex interplay between late diagnosis, being a woman, and combined diagnoses of ADHD and autism. It underscores how gender norms and stereotypes contribute to the oversight and dismissal of women's neurodivergence. Interpretative phenomenological analysis reveals the inextricability of femininity and neurotypicality, the gendered burden, discomfort, and adverse consequences of masking, along with the adverse outcomes of insufficient masking. Being an undiagnosed AuDHD woman is a confusing and traumatising experience with profound and enduring repercussions. The impact of female hormones exacerbated participants' struggles with (peri)menopause often being a catalyst for seeking diagnosis after decades of trauma. The epistemic injustice of not knowing they were neurodivergent compounded this trauma. Diagnosis enabled participants to overcome epistemic injustice and moved them into a feminist standpoint from which they challenge gendered inequalities relating to neurodiversity. This article aims to increase understanding and representation of late-diagnosed AuDHD women's lived experiences. The findings advocate for trauma-informed pre- and post-diagnosis support which addresses the gendered dimension of women's experiences of being missed and dismissed as neurodivergent. There needs to be better clinical and public understanding of how AuDHD presents in women to prevent epistemic injustice.

This study aimed to explore the experience of family-centered care (FCC) for high-risk infants admitted to the neonatal intensive care unit (NICU) among their parents and healthcare providers (HCPs) using the grounded theory methodology to understand the processes and interactions involved. By employing the grounded theory approach described by Corbin and Strauss, in-depth interviews were conducted with parents and HCPs experienced in NICU settings. Participants were selected via theoretical and snowball sampling, and data were managed and analyzed concurrently using MAXQDA software. The analysis was performed through open coding, process analysis, and category integration. The analysis of the experiences of FCC for high-risk infants in the NICU produced a detailed framework involving 71 concepts, 27 subcategories, and 11 upper categories. Through process analysis and category integration, the study identified a significant process termed "Union of care" characterized by four sequential phases: [Wandering]-[Approaching with one mind]-[Becoming a harmonious team]-[Carrying on the care]. This process model underscores the dynamic and collaborative nature of FCC in the complex environment of the NICU. This study highlights the importance of dynamic interaction and mutual understanding between parents and HCPs in FCC for high-risk infants. The promotion of a cooperative approach is recommended, with a focus on open communication, respect for parental roles, and HCPs' facilitation of parental involvement in care processes. Future research should consider larger and more diverse participant groups to broaden understanding and develop more inclusive FCC strategies.

The Health Sustainable Development Goal (SDG3) focuses on achieving universal healthcare coverage (UHC) through people-centered primary care and access to affordable high-quality healthcare services, medicines/vaccines, and specialized care professionals without undue financial stress. However, achieving UHC can be challenging if healthcare providers and patients cannot communicate meaningfully. Severe language barriers affect access to healthcare services. This study explores how linguistic diversity and language use barriers impact person-centered care delivery and access to healthcare services in a multilingual Ghanaian healthcare setting. Data were collected through in-depth individual interviews with patients (n = 17), caregivers (n = 11), and nurses (n = 11), one group interview with four patients, and participant observations. Data transcripts and field notes were inductively and manually coded and analyzed thematically. The study revealed that language barriers affect effective nurse-patient communication and interaction. Healthcare professionals and patients shop for translators and interpreters to overcome communication challenges. The study also found that healthcare professionals used medical jargon to emphasize their identity as experts despite its consequences on nurse-patient interactions and patient care. Miscommunication and misunderstanding due to language barriers derail nurse-patient therapeutic relationships and undermine patient disclosure, participation in the care process, and care quality, leading to adverse UHC outcomes. Therefore, serious attention must be paid to language use contingencies to achieve universal care, especially in resource-scared and multilingual healthcare contexts.

In 2020, Ecuador was among the most affected places in the world in the context of the COVID-19 emergency. Serious problems of structural inequality and governance resulted in corpses lying in the streets of Guayaquil-Ecuador's largest city-while local communities resisted in different ways. We interviewed 18 participants who engaged in actions of solidarity during this context, critically analyzed their discourses, and generated relevant themes. There was a structural scheme of (pandemic) brutality that determined embodied experiences of horror, conditioned by a governance of abandonment and its related problems. To confront such horror, solidary community resistance focused on food, physical and mental health, management of corpses, community-led communication, online education, and political participation. We interpret that this was a process of social determination of collective health and discuss important theoretical, methodological, and ethical-political implications.

Cycle syncing is a menstrual health trend on TikTok that involves aligning exercise and diet with the four menstrual cycle phases. Cycle syncing is part of the conversation on social media about women's reproductive health. However, clinical research on the effects of cycle syncing is inconclusive, and there is the potential that this trend could further perpetuate misinformation and gender stereotypes. Research suggests that social media can affect health behaviors, highlighting the need to understand if women intend to participate in cycle syncing. Guided by the Reasoned Action Approach, this study used focus groups (n = 39) to examine young women's attitudes, normative beliefs, and control beliefs about participating in cycle syncing, and critical feminist theory to sensitize resulting themes. Results suggest that normative beliefs emphasize support for the behavior among women, yet participants suggest that men would not support this behavior. Additionally, positive beliefs about cycle syncing content sourced from inconclusive scientific literature underscores concerns regarding the potential dissemination of misinformation in women's health practices on social media. Findings also fit into a larger discussion about "hormonophobia" and contraception on social media. Theoretical implications for mixed methods research and future directions are discussed.

In this autoethnographic study, I explore my lived experience of a chronic pain condition, the difficulty in writing about embodied experience, and the links between pain, shame, and power. Neglecting neither the complex emotional world of the individual nor the embedded cultural and social themes that continuously impact on the individual, at its best, autoethnography bridges the divide between personal writing and social influences. In this paper, I aim to combine my lived experience of a pain condition without any apparent biological cause, to the wider issue of how we conceive and attend to embodied experience, shame, and power in qualitative health research. The implications from the study include personal emancipation, challenging the mind/body split, and emphasizing the interconnections between emotion and embodied experience, and the need for a pluralistic approach to treatment. The autoethnographic approach aims to embrace situated subjectivity and to include the experience of being a pain sufferer in the research community.