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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]

Background and aims Regulation of electronic cigarettes has moved to the top of the addiction policy agenda, as demonstrated by the recent focus across the United Kingdom on introducing age-of-sale restrictions. However, the views of those affected by such regulation remain largely unexplored. This paper presents the first detailed qualitative exploration of adolescents' perceptions of existing, and opinions about potential e-cigarette regulation. Methods Sixteen focus groups, including a total of 83 teenagers between the ages of 14 and 17 years, were conducted in deprived, mixed and affluent urban areas in Scotland and England between November 2014 and February 2015. Transcripts were imported into Nivivo 10, coded thematically and analysed. Results Participants critically considered existing evidence and competing interests in regulatory debates and demonstrated sophisticated understanding of the advantages and disadvantages of regulation. They overwhelmingly supported strong e-cigarette regulation and endorsed restrictions on sales to minors, marketing and e-cigarette use in public places. Concern about potential health harms of e-cigarette use and marketing increasing the acceptability of vaping and smoking led these adolescents to support regulation. Conclusions In focus group discussions, a sample of UK adolescents exposed to particular communications about e-cigarettes supported strict regulation of e-cigarettes, including banning sales to minors and use in indoor public areas. [ABSTRACT FROM AUTHOR]

ABSTRACT Until recently, little was known about kinship care in the UK. Research has begun to illuminate the circumstances which lead to children being cared for by relatives, and the stresses and strains experienced by carers. However, most UK research has only considered 'looked-after' children placed with formal approved kinship foster carers, although this group forms the smallest proportion of children in kinship arrangements. In this paper, we use microdata from the 2001 UK Population Census to examine the characteristics of kinship carers and children, and demonstrate that most children in kinship care are growing up in informal unregulated arrangements. Implications for policy and practice are discussed. [ABSTRACT FROM AUTHOR]