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Introduction: The aim of this study was to gain consensus among young people with a stoma due to inflammatory bowel disease (IBD) on the priorities for the content of an intervention for the self‐management of stoma‐related distress. The current identification and management of distress in young people with a stoma is often suboptimal in clinical settings and there is a need for improved support resources. Methods: Two consensus group meetings were carried out via online video conferencing, using nominal group technique. Participants generated, rated on a Likert scale and discussed, topics for inclusion in a future self‐management intervention. Results: Nineteen young people, aged 19–33, with a stoma due to IBD took part in one of two group meetings. Participants were located across England, Scotland, and Northern Ireland. Twenty‐nine topics were generated by participants, seven of which reached consensus of ≥80%, that is, a mean of ≥5.6 on a 7‐point Likert scale. These were: receiving advice from young people with lived experience of stoma surgery; advice on/addressing concerns about romantic relationships, sex and intimacy; information about fertility and pregnancy related to stoma surgery; stoma 'hacks', for example, useful everyday tips regarding clothing, making bag changes easier and so forth; reflecting on and recognising own emotional response to surgery; tips on managing the stoma during the night; and processing trauma related to the illness and surgery journey. Conclusions: Findings extend previous research on young people's experiences of stoma surgery, by generating consensus on young people's priorities for managing distress related to surgery and living with a stoma. These priorities include topics not previously reported in the literature, including the need for information about fertility and pregnancy. Findings will inform the development of a self‐management resource for young people with an IBD stoma and have relevance for the clinical management of stoma‐related distress in this population. Patient or Public Contribution: Three patient contributors are co‐authors on this paper, having contributed to the study design, interpretation of results and writing of the manuscript. The study's Patient and Public Involvement and Engagement advisory group also had an integral role in the study. They met with the research team for four 2‐h virtual meetings, giving input on the aims and purpose of the study, recruitment methods, and interpretation of findings. The group also advised on the age range for participants. The views of young people with a stoma are the central component of the study reported in this paper, which aims to gain consensus among young people with an IBD stoma on their priorities for the content of a resource to self‐manage distress related to stoma surgery. [ABSTRACT FROM AUTHOR]

Background: Big data research requires public support. It has been argued that this can be achieved by public involvement and engagement to ensure that public views are at the centre of research projects. Researchers should aim to include diverse communities, including seldom‐heard voices, to ensure that a range of voices are heard and that research is meaningful to them. Objective: We explored how researchers involve and engage seldom‐heard communities around big data research. Methods: This is a qualitative study. Researchers who had experience of involving or engaging seldom‐heard communities in big data research were recruited. They were based in England (n = 5), Scotland (n = 4), Belgium (n = 2) and Canada (n = 1). Twelve semistructured interviews were conducted on Zoom. All interviews were audio‐recorded and transcribed, and we used reflexive thematic analysis to analyse participants' experiences. Results: The analysis highlighted the complexity of involving and engaging seldom‐heard communities around big data research. Four themes were developed to represent participants' experiences: (1) abstraction and complexity of big data, (2) one size does not fit all, (3) working in partnership and (4) empowering the public contribution. Conclusion: The study offers researchers a better understanding of how to involve and engage seldom‐heard communities in a meaningful way around big data research. There is no one right approach, with involvement and engagement activities required to be project‐specific and dependent on the public contributors, researchers' needs, resources and time available. Patient and Public Involvement: Two public contributors are authors of the paper and they were involved in the study design, analysis and writing. [ABSTRACT FROM AUTHOR]

Introduction: In the United Kingdom, fractures of the cervical dens process in older and/or frail patients are usually managed nonsurgically in a hard collar. However, hard collars can lead to complications and this management approach is now being questioned, with growing interest in maximising patients' short‐term quality‐of‐life. It is vital that patients' perspectives are considered; yet, there is a dearth of literature examining the aspect. To help inform wider decision‐making about use of collar/no collar management of dens fractures in older/frail people, we explored older/frail people's experience of the two management approaches and how they affected their perceived quality‐of‐life. Methods: We interviewed older and/or frail adults with a recent dens fracture (aged ≥65 years or with a clinical frailty score of ≥5) or their caregiver. Participants were recruited from both arms of a clinical trial comparing management using a hard collar for 12 weeks (SM) with early removal of the collar (ERC) and were interviewed following randomisation and again, 12–16 weeks later. Data were analysed using a framework approach. Results: Both participant groups (SM/ERC) reported substantial, negative quality‐of‐life (QoL) experiences, with the fall itself and lack of access to care services and information being frequent major contributory factors. Many negative experiences cut across both participant groups, including pain, fatigue, diminished autonomy and reduced involvement in personally meaningful activities. However, we identified some subtle, yet discernible, ways in which using SM/ERC reinforced or alleviated (negative) QoL impacts, with the perceived benefits/burdens to using SM/ERC varying between different individuals. Conclusion: Study findings can be used to support informed decision‐making about SM/ERC management of dens fractures in older/frail patients. Patient or Public Contribution: Public and patient involvement contributors were involved in the study design, development of interview topic guides and interpretation of study findings. [ABSTRACT FROM AUTHOR]

Abstract: Background: Colorectal cancer (CRC) screening programmes using a guaiac faecal occult blood test (gFOBt) reduce CRC mortality. Interval cancers are diagnosed between screening rounds: reassurance from a negative gFOBt has the potential to influence the pathway to diagnosis of an interval colorectal cancer. Methods: Twenty‐six semi‐structured face‐to‐face interviews were carried out in Scotland and England, with individuals diagnosed with an interval colorectal cancer following a negative gFOBt result. Results: Participants reported they were reassured by a negative gFOBt, interpreting their result as an “all clear”. Therefore, most did not suspect cancer as a possible cause of symptoms and many did not recall their screening result during symptom appraisal. Among those who did consider cancer, and did think about their screening test result, reassurance from a negative gFOBt led some to “downplay” the seriousness of their symptoms with some interviewees explicitly stating that their negative test result contributed to a delayed decision to seek help. Conclusion: Screening participants need to be informed of the limitations of screening and the ongoing risk of developing colorectal cancer even when in receipt of a negative result: the importance of minimizing delay in seeking medical advice for colorectal symptoms should be emphasized. [ABSTRACT FROM AUTHOR]

Background Women with one previous caesarean section must decide which mode of delivery they would prefer in their next pregnancy. This involves a choice between attempted vaginal birth and elective caesarean section. Objective To explore women's mode of delivery preferences and the values placed on the outcomes of decision making. Greater insight into these issues could benefit both clinical care and future research. Design Observational study using longitudinal data collected within a randomized controlled trial. Setting and Participants Seven hundred and forty-two women with one previous caesarean section recruited at four antenatal clinics in South West England and Scotland. Main outcome measures Mode of delivery preference recorded at 19 and 37 weeks' gestation and visual analogue scale ratings of health and delivery outcomes. Results Comparison of mid and late pregnancy preferences and actual mode of delivery shows that 57% of women hold the same mode of delivery preferences at both times and 65% of women actually have the birth they prefer. The visual analogue scale ratings show variation in the way women value the outcomes of the decision. Discussion and Conclusions Understanding the way women's mode of delivery preferences change, how these relate to actual mode of delivery and how women value the outcomes of their decision will be beneficial to health professionals who wish to support women both during pregnancy and after birth. In addition, the visual analogue scale ratings provide evidence that may improve the development of population-level and economic models of decision making. [ABSTRACT FROM AUTHOR]