Exploring Audio Recording in Terminally Ill Patients Receiving Hospice Care: "Stories for Life Charity" Model.

Stories for Life is a UK charity that provides a free and confidential service for terminally ill patients to audio record their "life story." Patients are given a copy of the recording and, if they wish, can then pass a copy on to their family/friends. This study explored how a group of terminally ill patients, receiving hospice care, experienced the process of making a voice recording of their biographies. Interviews were conducted with 5 terminally ill patients and 1 family member. Study participants found that talking to a trained volunteer provided a neutral, nonjudgmental interviewer. Patients reported a feeling of catharsis while telling their story as well as being able to reflect on significant life events. However, it was challenging to convey difficult emotions while also being mindful of protecting family who may listen to the recording. Although there was some uncertainty about how the recording would be perceived by listeners, leaving a voice-recorded life account was felt to be beneficial for immediate family members, as well as maintaining a meaningful connection with future generations. Overall, recording an audio biography in terminal illness can allow patients a space for reflection and a meaningful connection with their families.

Guidance was developed on how to write a plain language summary for diagnostic test accuracy reviews.

OBJECTIVE: To develop guidance for authors of diagnostic test accuracy (DTA) reviews to help them write a plain language summary of the results of their review. STUDY DESIGN AND SETTING: We used a combination of focus groups, user testing, and a web-based survey. Participants included patient representatives, media representatives, and health professionals. RESULTS: We present step-by-step guidance for authors of DTA reviews for writing a plain language summary. This guidance is illustrated with examples of reader-tested sentences, explanations, and a figure. CONCLUSION: We hope this guidance will allow reviewers to present the findings of DTA reviews so that it is easier for readers to understand the results and conclusions. This will increase the accessibility of these reviews for various audiences.

Parents' perceptions of reasons for excess weight loss in obese children: a peer researcher approach.

BACKGROUND: This study reports on the process of conducting participatory research by training peer researchers to conduct interviews and analyse data collected with parents of overweight children. The methodology was chosen as a means of (a) encouraging participation among a hard-to-engage group (i.e., parents of overweight children), and (b) generating novel insights and challenging academic/health professional assumptions through the involvement of parents in the interpretation of findings. METHODS: Four parents (all female) were recruited as peer researchers and trained in research processes, ethics, and interview skills over three half-day workshops. The intended interviewees were parents of children identified as obese through the National Child Measurement Programme (NCMP) at the start of primary school (age 4-5) but who had lost their excess weight by age 10-11; little is currently known about how this excess weight loss is achieved. Interviews were conducted by peer researchers, transcribed verbatim and analysed thematically by both peer- and university-based investigators. RESULTS: The peer researchers felt confident to conduct interviews after three training sessions. Recruitment of interviewees was challenging, resulting in only four volunteers (all mothers) over a 5-month period; thus peer researchers were only able to conduct one interview each. All interviews were considered good quality in comparison to those conducted by Masters-level research assistants. The process of co-analysis resulted in a change in emphasis from that initially generated by the university research team; the role of health professionals in weight management was de-emphasised, and the importance of 'not singling out' overweight children accentuated. Given the limited number of interviews, the results of the study are only provisional but resulted in three themes: Whole Family Action, Support (and lack of support), and Protecting Childhood. CONCLUSIONS: Training peer researchers to conduct and analyse interviews was feasible within a short period of training. Peer researchers found the experience interesting, informative and worthwhile. Two of the four volunteered to be involved in a related study 12 months later. The different perspective brought through co-analysis suggests that this approach to conducting participatory research may be a useful means of working with the public to generate new ideas to tackle intransigent issues.

A qualitative study exploring the value of a catheter passport.

Many patients leaving hospital with a catheter do not have sufficient information to self-care and can experience physical and psychological difficulties. AIM: This study aimed to explore how a patient-held catheter passport affects the experiences of patients leaving hospital with a urethral catheter, the hospital nurses who discharge them and the community nurses who provide ongoing care for them. METHOD: Qualitative methods used included interviews, focus groups and questionnaires, and thematic analysis. FINDINGS: Three major themes were reported-informing patients, informing nurses; improving catheter care, promoting self-management; and supporting transition. CONCLUSION: The catheter passport can bridge the existing information gap, improve care, promote self-care and help patients adjust to their catheter, especially if complemented by ongoing input from a nurse or other health professional.

GPs role identifying young people who self-harm: a mixed methods study.

BACKGROUND: Self-harm is common among young people and is evident in increasingly younger age groups. Many young people who self-harm do visit their GP but do not access specialist support. GP's can find it challenging to raise and discuss this sensitive subject with young people during short consultations. OBJECTIVE: To explore GP's capabilities, motivations and opportunities for discussing self-harm and to identify barriers to and enablers for proactively discussing self-harm with young people. DESIGN AND SETTING: An exploratory, mixed methods study was designed comprising an online survey and a qualitative interview study with GPs in the South West of England. METHODS: An online survey was completed by 28 GPs. Ten GPs took part by telephone, in semi-structured interviews. Quantitative data was analysed using descriptive statistical techniques and thematic analysis was used to analyse the qualitative data. Findings from the quantitative and qualitative analysis are synthesized to illustrate GPs' skills, knowledge and perceptions about young people who self-harm. RESULTS: Experienced GPs may underestimate the prevalence of self-harm in young people, particularly in the 11-14 age range. While consultations with young people and their carers can be challenging, GPs acknowledge that it is their role to provide support for young people who self-harm. GPs would welcome training for themselves and other practice staff in talking to young people and practical information about self-harm. CONCLUSION: All primary care staff who provide frontline support to young people should receive education and practical training in talking about self-harm.