Background: There has been an increasing interest in how children and young people can be involved in patient and public involvement and engagement (PPIE) in health research. However, relatively little robust evidence exists about which children and young people are reported as being involved or excluded from PPIE; the methods reported as being used to involve them in PPIE; and the reasons presented for their involvement in PPIE and what happens as a result. We performed a scoping review to identify, synthesise and present what is known from the literature about patient and public involvement and engagement activities with children and young people in health related research.Methods: Relevant studies were identified by searches in Scopus, Medline, CINAHL, Cochrane and PsychInfo databases, and hand checking of reference lists and grey literature. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) was used as a framework to collate the data. Two reviewers independently screened articles and decisions were consensually made.Main findings: A total of 9805 references were identified (after duplicates were removed) through the literature search, of which 233 full-text articles were assessed for eligibility. Forty studies published between 2000 and 2019 were included in the review. The review reveals ambiguities in the quality of reporting of PPIE with children with clear reporting on demographics and health conditions. The review found that children and young people were commonly involved in multiple stages of research but there was also significant variation in the level at which children and young people were involved in PPIE. Evaluation of the impact of children and young people’s involvement in PPIE was limited.Conclusions: Consultation, engagement and participation can all offer children and young people worthwhile ways of contributing to research with the level, purpose and impact of involvement determined by the children and young people themselves. However, careful decisions need to be made to ensure that it is suited to the context, setting and focus so that the desired PPIE impacts are achieved. Improvements should be made to the evaluation and reporting of PPIE in research. This will help researchers and funders to better understand the benefits, challenges and impact of PPIE with children and young people on health research.

Inflammatory Bowel Disease (IBD) describes a group of conditions that includes Crohn’s disease and ulcerative colitis. Unlike some chronic conditions, to a greater or lesser extent, IBD is hidden from or invisible to others which enables concealment of the condition, especially when stigma is associated with the condition. Concealment or nondisclosure allows a means of identity management. Disclosure of a chronic condition is not a single event, and it is dependent on many factors. There is little literature that specifically addresses stigma and/or disclosure in relation to children and young people with IBD. An in-depth qualitative study was undertaken, framed by Interpretive Description and using interviews, friendship maps, and photographs within a participatory framework. Public and patient involvement and engagement (PPIE) was undertaken throughout (inception to dissemination) the study. Young people aged 14-25 years with IBD who had participated in the survey phase of the larger study self-selected to participate in interviews that focused broadly on friendship and feelings of social connectedness. Data were analysed using an iterative, interpretive approach. Preliminary themes were developed and these were explored further, and then tentative theoretical connections about friendship were developed. One superordinate theme focused on disclosure. Thirty-one young people (16 males, 15 females, mean age 18.7 years; 24 Crohn’s, 7 colitis) participated in the interviews (of these, five created friendship maps and six utilised photographs). Three discrete, but interlinked, themes were generated, revealing young people’s experiences of disclosure: to tell or not to tell; controlling the flow: the who, when, what, and how of telling; and reactions and responses to telling: anticipated and actual. Decisions about telling friends about having IBD are challenging for many young people. Having control over disclosure is not always possible, and the potential consequences can feel risky. However, most young people had positive experiences of disclosure and gained support from friends and romantic partners. Most young people downplayed the seriousness of their IBD, revealing some facets of their condition, aiming to sustain their self-identity. Only one young person had been given professional support to disclose. Provision of support and opportunities to discuss whether, when, who, and how to tell friends and what the risks and benefits may be is something that could be woven into an ongoing and wider person-centred dialogue between young people and health professionals within routine clinic visits.

Inflammatory bowel disease (IBD) is an incurable, chronic, gastrointestinal condition that can constrain young people’s social relationships. Few studies have specifically explored friendships of people with IBD. This qualitative, participatory study used interviews, photographs, and friendship maps to explore friendships and friendship networks of young people with IBD. An online Young Person’s Advisory Group was actively engaged throughout the study. Thirty-one young people participated (n=16 males, n=15 female; n=24 Crohn’s disease, n=6 ulcerative colitis, n=1 IBD-unclassified; the mean age at study was 18.7 years; range 14-25 years). Findings present a metatheme “The importance and meaning of friendships” and three interwoven subthemes of “Sustaining friendships,” “Forming new friendships,” and “Letting go of friendships.” Friendship was important to the young people with IBD, providing support, but associated with challenges such as disclosure. Such challenges could be mitigated by clearer conversations with clinicians about friendships and more extensive conversations about friendships and long-term conditions in education settings.

Introduction Sleep and epilepsy have an established bidirectional relationship yet only one randomised controlled clinical trial has assessed the effectiveness of behavioural sleep interventions for children with epilepsy. The intervention was successful, but was delivered via face-to-face educational sessions with parents, which are costly and non-scalable to population level. The Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) Sleep-E trial addresses this problem by comparing clinical and cost-effectiveness in children with Rolandic epilepsy between standard care (SC) and SC augmented with a novel, tailored parent-led CASTLE Online Sleep Intervention (COSI) that incorporates evidence-based behavioural components. Methods and analyses CASTLE Sleep-E is a UK-based, multicentre, open-label, active concurrent control, randomised, parallel-group, pragmatic superiority trial. A total of 110 children with Rolandic epilepsy will be recruited in outpatient clinics and allocated 1:1 to SC or SC augmented with COSI (SC+COSI). Primary clinical outcome is parent-reported sleep problem score (Children’s Sleep Habits Questionnaire). Primary health economic outcome is the incremental cost-effectiveness ratio (National Health Service and Personal Social Services perspective, Child Health Utility 9D Instrument). Parents and children (≥7 years) can opt into qualitative interviews and activities to share their experiences and perceptions of trial participation and managing sleep with Rolandic epilepsy. Ethics and dissemination The CASTLE Sleep-E protocol was approved by the Health Research Authority East Midlands (HRA)–Nottingham 1 Research Ethics Committee (reference: 21/EM/0205). Trial results will be disseminated to scientific audiences, families, professional groups, managers, commissioners and policymakers. Pseudo-anonymised individual patient data will be made available after dissemination on reasonable request. Trial registration number ISRCTN13202325.

Background: Stroke has high mortality. Challenges in providing end-of-life care include uncertainty among healthcare professionals about when to start care. While generic tools and guidelines exist, which outline components of quality end-of life care, they may not fully address stroke’s unpredictable trajectories, complicating care planning. Objective: To enhance understanding of end-of-life care post-stroke. Methods: We undertook an explanatory sequential mixed methods approach, including a cross-sectional survey and semi-structured interviews. All 286 United Kingdom (UK) National Health Service (NHS) hospitals providing inpatient stroke care were approached for participation in an on-line cross-sectional survey. The survey of healthcare professionals from UK stroke units was used to map current stroke end-of-life care and models of care. Fourteen staff who completed the survey and agreed to a future interview were purposively selected. The semi-structured interviews with healthcare professionals involved in delivering end-of-life care post-stroke were conducted and interpreted using the Theoretical Domains Framework. We aimed to enhance our understanding of the experiences, expectations, challenges and barriers in providing end-of-life care post-stroke, including effective clinical decision-making. Results: Across 108 responding survey sites, 317 responses were received. Results showed a lack of structured tools and approaches, an absence of stroke-specific guidance and variable delivery of end-of-life care post-stroke. Thirteen staff (nurses, occupational therapists, medical stroke consultants, and a speech and language therapist) agreed to be interviewed. The data provided a fuller understanding of the context within which end-of-life care post-stroke is delivered. The varied challenges faced include: uncertain prognosis, complex decision-making process, varying skill levels, staffing levels, the hospital environment, emotional strain on both families and staff, inequitable access to specialist palliative care, and difficulties associated with different models of care (stroke service structures and cultural context). Conclusions: Provision of end-of-life care post-stroke is complex, challenging, uncertain, and inconsistent. There is limited evidence or guidance to support healthcare professionals. There is a need for implementation support, which includes education, to better enable quality and more consistent end-of-life care post-stroke. Further research is required to assess interventions that can support end-of-life care post-stroke to aid clinicians in providing quality palliative care for stroke patients.

Through the emerging field of bio-nanotechnology, students from UK high schools were provided with an opportunity to explore the use of DNA as a self-assembly building material to create unique DNA origami designs and evaluate these using web-based software. The project helped widen awareness of the cutting-edge research within materials science, enabled the participants to work with a high degree of independence, and reinforced the practical techniques required to synthesize a predesigned origami structure at school. This article describes the results of a study of this long-term, student-led independent research project. We collected data from 51 young people aged 16–19 engaged in the project using group interviews and found authentic research experiences can foster greater personal autonomy, sustain engagement, and be used to improve the perception of subjects such as materials science. The project also gave participants a greater understanding of the broader scene relating to careers within STEM and research as well as improved research skills through thinking and acting like a researcher.