A qualitative exploration of the experiences of students attending interprofessional Schwartz Rounds in a University context.

Schwartz Rounds are a cultural change initiative for interdisciplinary staff to reflect on their work to preserve the human connection. Their recent implementation in educational contexts means that there is limited research exploring the experience of students attending Rounds. This study aimed to develop understanding of how health-care students experience participation at Schwartz Rounds in a University context. Using an Interpretative Phenomenological Analysis approach, semi-structured interviews were conducted with eight health-care students about their experience of attending Rounds. Three themes were identified: ambivalence about safety to share "would it reflect badly on me?"; unifying through sharing emotions "you're not alone in feeling that"; and space to question professional cultures "there's not normally space given to that". The findings suggest that Rounds promote connectedness through humanizing professions and focusing on shared emotions; however, safety to share within Rounds can be limited by fear of judgment. This supports previous literature and suggests that Rounds may be well placed in educational contexts to support cultural change from the beginning of training.

Key experiences of primary social groups in Unspecified Kidney Donation.

BACKGROUND: The role of family members in directed kidney donation is well documented in the literature from both a physiological and psychosocial perspective. The experiences of families, or primary social groups (PSGs), where one member considers donating a kidney via unspecified altruistic kidney donation route (UKD) is poorly understood. This is pertinent as lack of family support has been identified as a potential contributor to donation withdrawal. OBJECTIVES: This study aimed to explore the relevant psychosocial factors underpinning completed and uncompleted donations. DESIGN: A qualitative study using semi-structured interviews. PARTICIPANTS: Qualitative interviews were conducted in the United Kingdom with 35 individuals comprising of: 11 donors who donated their kidney altruistically and 8 of their PSG members, and 11 donors who withdrew and 5 of their PSG members. APPROACH: Interviews were transcribed verbatim and analysed using Framework Analysis. RESULTS: Two major themes were identified: (1) Supportability, which contained experiences fundamental to proceeding to donate, underpinned by four subthemes Acceptability, Awareness and Information, Family Risk and Ambivalence;(2) Seeking Resolution, contained discussions of experiences following either withdrawal from or completion of the donation, and comprised two sub-themes, Unfinished Business and Resolve. CONCLUSIONS: There are key differences in the experiences between those who completed their donation and those who withdrew. It is clear from this study that UKD operates within a PSG's social framework. Clinical implications suggest interventions at the level of addressing ambivalence within the PSG and the need for promotion of better psychosocial outcomes both following completion or withdrawal from donation.

Understanding barriers and outcomes of unspecified (non-directed altruistic) kidney donation from both professional's and patient's perspectives: research protocol for a national multicentre mixed-methods prospective cohort study.

INTRODUCTION: Living donation accounts for over one-third of all kidney transplants taking place in the UK. 1 The concept of anonymously donating a kidney to a stranger (non-directed altruistic or unspecified kidney donation (UKD)) remains uncomfortable for some clinicians, principally due to concerns about the motivations and long-term physical and psychological outcomes in this donor group. AIMS: The research programme aims to provide a comprehensive assessment of the unspecified donor programme in the UK. It aims to identify reasons for variations in practice across centres, explore outcomes for donors and ascertain barriers and facilitators to UKD, as well as assess the economic implications of unspecified donation. METHODS: The research programme will adopt a mixed-methods approach to assessing UKD nationally using focus groups, interviews and questionnaires. Two study populations will be investigated. The first will include transplant professionals involved in unspecified kidney donation. The second will include a 5-year prospective cohort of individuals who present to any of the 23 UK transplant centres as a potential unspecified living kidney donor. Physical and psychological outcomes will be followed up to 1 year following donation or withdrawal from the donation process. A matched sample of specified donors (those donating to someone they know) will be recruited as a control group. Further qualitative work consisting of interviews will be performed on a purposive sample of unspecified donors from both groups (those who do and do not donate). DISSEMINATION: The findings will be reported to NHS Blood and Transplant and the British Transplant Society with a view to developing national guidelines and a protocol for the management of those presenting for unspecified donation. TRIAL REGISTRATION NUMBER: ISRCTN23895878, Pre-results.

Understanding donation experiences of unspecified (altruistic) kidney donors.

OBJECTIVES: Kidney donation from a living donor to an unknown recipient has been legal in the UK since 2006. Yet there is little research into the experiences of unspecified kidney donors (UKDs) in interaction with the health care systems. DESIGN: This article explores the experiences of 14 UKDs recruited through four regional transplant co-ordinating centres in England. At interview, they were invited to share their donation stories and discuss the antecedents, social, and psychological processes involved. Interviews were audio-taped and transcribed. METHODS: Transcripts were analysed using a grounded theory approach employing a constant comparison methodology. Themes emerging from the data were named to form categories organized around the central focus of the research, forming an analytical story of UKDs' experiences. RESULTS: Two major categories emerged: 'connected to others' and 'uneasy negotiations with others'. 'Connected to others' encompasses the motivations and psychological and social consequences of UKD. 'Uneasy negotiations with others' refer to the concerns and conflicts that arose during the donation process. CONCLUSIONS: This study highlights the importance of social relationships on the process and outcomes of UKD. These UKDs report both intra- and interpersonal benefits from donation. The donation process, however, also created interpersonal stress, and conflicting messages about the acceptability of their donation were experienced in UKDs' personal lives and in their interactions with health care services. Findings are discussed with reference to the wider literature on UKD and altruism and in relation to implications for clinical practice. STATEMENT OF CONTRIBUTION: What is already known on this subject? Unspecified living kidney donation is an under-researched area with only three research papers published worldwide that report on the motivations and experiences of donors. These studies indicate that donors endorse pro-social values and receive positive interpersonal and intrapersonal benefits from donation. What does this study add? UKDs' experiences are made explicit and provide a framework for future research. Social connections (capital) are an important precursor to and outcome from donation. Assumptions of pathological motivations were encountered by donors in their personal life and within the NHS.

Working with lay people in health service research: a model of co-evolution based on complexity theory.

Involving lay researchers is an important part of Government policy in the United Kingdom within the context of the National Health Service. Here we draw upon insights from complexity theory to suggest a model that we call consensual qualitative research where lay researchers and professionals are co-producers of knowledge. The focus of attention is on understanding and facilitating the patterns that emerge from non-linear interaction at a local level. We describe some core principles that can facilitate the development of such a model and conclude that the resources in terms of time and effort that such an approach requires, should not be underestimated.

Patients' experience of transition onto haemodialysis: a qualitative study.

Transition onto haemodialysis is a time of increased psychosocial difficulty, yet, many renal patients exhibit personal resilience in continuing to lead productive lives. Using a positive psychological methodology, this qualitative study aims to identify factors identified by patients as helpful in the transition onto haemodialysis. Semi-structured interviews were undertaken with 10 patients within six months of starting haemodialysis. Interpretive content analysis identified three main themes (each with subthemes) in patients' accounts-preparation, cognitive style and social support. Limited differences arose between patients who underwent a gradual versus acute transition onto haemodialysis. Themes are discussed with reference to implications for practice development.

Traumatic brain injury and the construction of identity: a discursive approach.

Using discourse analysis, this paper explores the co-construction of identity for individuals who have sustained a severe traumatic brain injury (TBI). An analysis of discourse, obtained through interviewing six adults with a TBI, each with one or two significant others, suggested four main interpretative repertoires which informed participants' co-construction of identity: "Medical model referencing", "dependence as intrinsic to TBI", "TBI as deficit" and "progression and productivity as key life-defining features". Medical model referencing is discussed in relation to the common, passive positioning of individuals with TBI, which often occurred in relation to memory loss. The construction of abandonment was also common, due to participants" dependence on the provision of specialist, expert services in the community. Clinical implications are discussed in terms of facilitating individuals in the co-constructing and re-authorship of more empowering and inclusive narratives and providing community services that promote meaningful social identities, separate from medical discourse.

A qualitative study of migraine involving patient researchers.

BACKGROUND: Migraine is poorly managed in primary care despite a high level of morbidity. The majority of sufferers use non-prescription medications and are reluctant to seek help but the reasons for this are not understood. AIM: The aim of this study was to develop a research partnership between migraine sufferers and healthcare professionals to synthesise tacit and explicit knowledge in the area. Building upon this partnership, a further aim was to explore what it is to suffer with migraine from patients' perspectives in order to inform health service delivery. DESIGN: Qualitative interview study involving healthcare professionals and patient researchers. SETTING: A purposeful sample of eight migraine sufferers who had attended a local intermediate care headache clinic. METHOD: A consensual qualitative approach. RESULTS: Migraine had a high and unrecognised impact on quality of life. 'Handling the beast' was a central metaphor that resonated with the experience of all sufferers who sought to control their problem in different ways. Three major themes were identified: making sense of their problem; actively doing something about it either through self-help or professional advice; being resigned to it. CONCLUSION: Despite a significant impact on the quality of life of migraine sufferers and their families, their needs remain largely unmet. Useful insights can be obtained when patients and professionals work together in true partnership but the time and effort involved should not be underestimated. Further research is needed to identify why there are major deficiencies in delivering care in this common problem.

The quest for well-being: a qualitative study of the experience of taking antipsychotic medication.

Antipsychotic medication is integral to the treatment of severe and enduring mental health problems (e.g. schizophrenia). Such medication is associated with significant adverse side effects that can affect treatment adherence. To date there have been few attempts to analyse qualitatively service users' experience of taking antipsychotic medication. This study, conducted in Exeter, South West England, investigates the subjective experience of side effects of antipsychotic medication to gain a greater understanding of service users' experiences and to gain insights into adherence issues. Data were analysed using a variant of grounded theory (Glaser and Strauss, 1967) and a model of the experience of taking antipsychotic medication was constructed. The interview schedule was then refined and further interviews (including a focus group) were conducted among a diverse sample recruited from local day centres. Results indicated that people taking antipsychotic medication do not see side effects and symptoms as separate issues. Instead, they describe drugs as 'good' or 'terrible'-an indication of the total impact of their treatment. The model constructed reflects this, having the core concept of Well-being: that is, normality of function, feeling and appearance to the outside world. Major themes relating to this core category were managing treatment, evaluating treatment and understanding of the situation. Implications for medication adherence and clinical practice, including drug choice, are discussed, and the doctor-patient relationship is also considered.