Qualitative Health Research最新文献

Guillain-Barré syndrome is a rare neurological condition. Research has increased our understanding of the etiology, prognosis, and effective medical treatment of the illness. There is a lack of understanding regarding the psychological effects and what could help patients. This study aimed to begin to address this using constructivist grounded theory. Eleven interviews were conducted with participants who had received a diagnosis of Guillain-Barré syndrome in the preceding 4 years. The model that emerged identified two key processes: "Loss, determination, and adjustment" and "The unknown." "Receiving support," "Obtaining knowledge," and "Experiencing hope" assist in navigating these psychological effects. The findings emphasize the all-encompassing effects of Guillain-Barré syndrome, illustrating the need for rehabilitation professionals to alleviate uncertainty and foster practices that could facilitate patients' navigation through the illness. Recommendations for further research are provided.

Approximately 2500 people receive electroconvulsive therapy (ECT) annually in the United Kingdom; however, there is growing evidence of long-term adverse effects. Few studies have focused on people's experience of ECT, particularly over the long term. The experience of ECT is known to be complex, requiring qualitative exploration. Therefore, this study aimed to explore the long-term adverse experiences of ECT, including psychological impacts, meaning-making, and coping. Narrative analysis considered thematic, structural, and performative elements of seven people's stories. Themes were explored across the timeline of participants' experiences. Before ECT, participants felt misinformed regarding ECT and misunderstood by healthcare professionals. They noticed immediate changes in their cognition, memory, and mood after ECT. Returning home was important in participants' discovery of differences. Long-term impacts were loss (of ability, memory, humanity, and connection), the realization that ECT had been damaging, and understanding ECT to have caused brain damage. The extensive nature of loss experienced by participants was comparable to the concept of ambiguous loss. They experienced a lack of follow-up care and denial of their experiences, which could contribute to psychological iatrogenic harm. Participants coped with adverse experiences by using prompts and strategies and connecting with others. Further research is needed into the adverse long-term effects of ECT, especially considering cognitive effects, memory loss, and how these contribute to a changed sense of self. Service development is urgently required, especially for ECT follow-up care.

The COVID-19 pandemic has raised a wide range of challenges for qualitative researchers, especially when most of the world was facing isolation during the first wave in 2020. The scientific literature rapidly raised discussion regarding data collection adaptation for remote inquiry and ethical dilemmas. However, it is still necessary to discuss the implications of running qualitative studies as a researcher immersed in a global emergency, precisely when the researchers themselves are involved in this context. To what extent, or in what way, can being fully immersed in this context influence all phases of the research? What is the role of reflexivity in this context? We proposed a new discussion based on the study we performed remotely in 2020, among infected pregnant women, using concepts of the Freudian feeling of uncanny to explore the life experience of the researcher. We also considered the concept of the discourse of the master from Jacques Lacan to debate the researchers' position during the pandemic and to bring practical implications.

An ostomy is a life-changing procedure. Individuals who have ostomy surgery must adjust to changes post-operation, some of which involve changes to communication and managing social situations. The purpose of this project was to create an evidence-based communication guide for people with ostomies while transitioning to life after surgery and serve as a reference for the creation of communication guides for similar chronic illnesses. Emphasizing co-production, the first stage of the project, referred to as Pre-Design, included a needs assessment through qualitative interviews with (n = 27) individuals who have had an ostomy for at least a year. In the second stage of the project, Co-Design, our team used information gathered from the interviews with participants to create a rough draft of our communication guide. In the last stage, called Post-Design, we invited seven participants from the Pre-Design stage and recruited eight new participants (n = 15) to take part in both interviews and focus groups to evaluate the proposed communication guide. We reflect on both the strengths and weaknesses of the proposed communication guide based on feedback gathered from ostomates, followed by a discussion of the benefits of incorporating and applying this guide into practice. Results suggest that there are benefits to co-production as a method for healthcare delivery and multiple needs for guidance related to salient social situations for people with ostomies. These results can be applied to create evidence-based communication guidance for other relevant health contexts.

The experience of the body among female sex workers has been researched from various perspectives. However, studies examining body experiences of aging female sex workers are scarce. This knowledge gap reflects the overall paucity of research on this aging population, particularly the absence of their subjective accounts. Furthermore, there is a significant lack of research on the experiences of women in this profession who live in conservative cultures, such as the Arab culture. The aim of the current study was to address this gap by exploring how active and recently retired older female sex workers from an Arab community experienced their aging bodies, using a critical feminist gerontology perspective as a conceptual lens. An interpretive phenomenological analysis approach was used for in-depth analysis of interviews with 10 women. The participants' narratives revealed three themes: The body as the link preserving the sex work experience; Alienation and rejection of the body; and Gratitude toward the aging body. The findings suggest that the body serves as an arena where participants' identities are negotiated, along with societal attitudes toward aging and sex work. Understanding how older female sex workers experience and perceive their bodies may be helpful for creating context-sensitive interventions and policies that address the complex needs and vulnerabilities of this population.

Advance care planning involves understanding and sharing values and goals to ensure people with serious illnesses receive treatment that is consistent with their preferences. With the growing treatment options available to patients living with advanced heart failure, advance care planning is regarded as a means of preserving individual autonomy. Despite significant public awareness campaigns, research, and interventions to increase advance care planning, it remains under-utilized in heart failure care. The aim of this research was to gain an understanding of how patients with heart failure understand and express their autonomy through the process of advance care planning. Critical qualitative multiple-case study methodology was used. Cases were constructed using data from 19 interviews with seven patients, eight caregivers, and nine healthcare providers from across two institutions. Constructions of autonomy were developed using within- and across-case analysis guided by a relational conception of autonomy based in feminist ethics. There were three key findings: (1) advance care planning is understood as external to treatment decision-making within the current biomedical landscape; (2) the experience of autonomy in advanced heart failure is incongruent with the dominant individualistic approach; and (3) advance care planning is influenced by interpersonal relationships and responsibilities as well as interpersonal and social power dynamics. Although advance care planning is considered a practice that preserves individual autonomy, interpersonal, institutional, and societal level relationships were all heavily influential in this practice. Future research should consider the advancement of advance care planning, and the enactment of autonomy, using a relational framework that acknowledges autonomy is shaped by institutional, social, and interpersonal relationships.

Aphasia is an impairment of language caused by damage to the brain that affects people's ability to produce or comprehend speech and can affect reading and writing. There is little research about the experiences of bilingual or multilingual people with aphasia, despite their language profiles being both uniquely individual and differentially affected by the condition. This paper describes a study that used interpretative phenomenological analysis (IPA) to understand more about the experiences of people who have aphasia and who speak Welsh-a legally recognized yet minority, national language. The study was conducted by two speech and language therapists-one who is a post-doctoral researcher and the other who is a bilingual Welsh-speaker. Their positionality and skillset were integral to the conduct of the study. Three bilingual Welsh-speakers with post-stroke aphasia were interviewed. Analysis of their data was informed by IPA, approached through a dialogic theoretical lens. The analytic method provided deep and rich insights into the complex political, cultural, and heritage influences on the experiences of Welsh-speakers with aphasia. The findings provide novel contributions to the literature concerning the multifaceted impact of aphasia on bilingual individuals, with implications for both bilingual qualitative research and rehabilitation practices.

A co-designed, Aboriginal health practitioner-led dementia risk management program (DAMPAA) was implemented from 2021 to 2024 to address the growing concern of dementia among Aboriginal and Torres Strait Islander peoples in Western Australia. Key features of DAMPAA included group walking and yarning sessions incorporating health and well-being education twice a week, alongside a six-month home program. A theory of change framework guided a parallel process evaluation, co-developed with Aboriginal Community-Controlled Health Services and an Elders Governance Group. The evaluation involved two distinct groups: Elders who participated in the program and staff involved in its design and delivery. Qualitative data were collected through yarning interviews, focusing on the program's implementation and impact. A brain health program for Elders was highly valued. Through group walking and yarning, the program supported a deeper connection to Country and strengthened community connection enhancing social and emotional well-being for Elders as well as program staff. A key learning was the significance of an Elders-informed health program, delivered by local Aboriginal people at an Aboriginal Community Controlled Health Service, creating a space that strengthens connection and a sense of belonging for Elders. The process evaluation validated the importance of the DAMPAA program. The DAMPAA program and resources have since been integrated into Elders' health programs across all service partners, demonstrating its relevance and potential for broader application.

Changes in the experience of time have originally been described in mental disorders within the framework of the phenomenological psychopathology of the lived time. Both phenomenological and qualitative empirical studies have shown that physical illnesses, such as cancer or chronic pain, can be accompanied by a change in experienced temporality. Likewise, the sudden onset of severe heart disease in early and middle age represents a biographical break for the patient and can lead to numerous changes in the experience of time. In our qualitative study, a purposive sample of sixteen patients aged 30-59 years was included. Of these, four patients had sudden cardiac arrest, seven had myocardial infarction, and five had other severe cardiac diseases. Phenomenological semi-structured interviews were conducted and analyzed using interpretative phenomenological analysis. Patients reported that their temporality changed after serious heart disease. The experience of the participants can be summarized in five themes: "Heart disease as a biographical turning point," "The clock can stop any moment," "Feeling prematurely aged by heart disease," "Other people's time is not my time," and "Just living in the moment." From a psychocardiological perspective, a temporal analysis of severe heart disease can help caregivers understand and support patients better. Further studies should be conducted on cardiac patients with a lower disease burden, sex-specific issues, and young cardiac patients with congenital heart disease.

Persistent pain is the leading cause of years lived with disability worldwide. Research into pain experiences often adopts a humanistic perspective, predominantly relying on interview data and rarely engaging with real-world contexts. The Posthuman Walking Project brought together a transdisciplinary network of individuals with lived experiences of pain alongside academics and clinicians from five countries to collectively explore how posthuman philosophies might challenge human-centered paradigms. Specifically, we used mobile phone video footage to investigate the more-than-human entanglements of walking in the landscape when experiencing pain. This paper reflects on our engagement with the uncertainty and multifaceted nature of exploratory methods and how the process of "becoming posthuman" did not follow a pre-determined path. We outline our rhizomatic methodological approach, emphasizing the contributions of walker-partners, project development meetings, and the value of allowing methods to remain responsive and emergent. Finally, we discuss the complexities of studying the assemblage of humans, walking, pain, and landscape, illuminating the transformative potential of posthuman frameworks in understanding lived experiences of pain.