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BACKGROUND: Workers tasked with specific responsibilities around patient and public involvement (PPI) are now routinely part of the organizational landscape for applied health research in the United Kingdom. Even as the National Institute for Health and Care Research (NIHR) has had a pioneering role in developing a robust PPI infrastructure for publicly funded health research in the United Kingdom, considerable barriers remain to embedding substantive and sustainable public input in the design and delivery of research. Notably, researchers and clinicians report a tension between funders' orientation towards deliverables and the resources and labour required to embed public involvement in research. These and other tensions require further investigation. METHODS: This was a qualitative study with participatory elements. Using purposive and snowball sampling and attending to regional and institutional diversity, we conducted 21 semi-structured interviews with individuals holding NIHR-funded formal PPI roles across England. Interviews were analysed through reflexive thematic analysis with coding and framing presented and adjusted through two workshops with study participants. RESULTS: We generated five overarching themes which signal a growing tension between expectations put on staff in PPI roles and the structural limitations of these roles: (i) the instability of support; (ii) the production of invisible labour; (iii) PPI work as more than a job; (iv) accountability without control; and (v) delivering change without changing. CONCLUSIONS: The NIHR PPI workforce has enabled considerable progress in embedding patient and public input in research activities. However, the role has led not to a resolution of the tension between performance management priorities and the labour of PPI, but rather to its displacement and - potentially - its intensification. We suggest that the expectation to "deliver" PPI hinges on a paradoxical demand to deliver a transformational intervention that is fundamentally divorced from any labour of transformation. We conclude that ongoing efforts to transform health research ecologies so as to better respond to the needs of patients will need to grapple with the force and consequences of this paradoxical demand.

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AIM: The aim of this study was to scope communication curriculum reported as currently being delivered within undergraduate children's nursing programmes across the Republic of Ireland and the United Kingdom. BACKGROUND: Communication between a children's nurse and a child/young person influences a child/young person's healthcare experience. Despite an identified need for a comprehensive and effective communication curriculum within undergraduate nursing, there is a notable gap of understanding of the delivery and content of communication training within children's nursing curricula. DESIGN: A mixed method, online anonymous self-report survey design was adopted. METHODS: Programme Leads of undergraduate children's nursing programmes in the Republic of Ireland and the United Kingdom were asked to report on how communication training is delivered to students on undergraduate children's nursing programmes. The Checklist for Reporting of Survey Studies (CROSS) was used for the reporting of this study. RESULTS: Thirty-two programme leads completed the survey (51 % response rate). Findings show variability in the delivery and content of communication training across Higher Educational Institutions. Core communication modules featured across all nursing programmes, however, only two programme leads reported delivering standalone child-centred communication modules. Communication training was not always delivered by an educator with professional experience of children and young people in healthcare. Curriculum capacity had an impact on the delivery of communication training, with clinical practice being relied on to supplement child specific communication training. Programme leads highlighted the need for greater inclusion of child voice in shaping and delivering undergraduate children's nurse education. CONCLUSIONS: This study shows that while communication is covered as a core part of the undergraduate nursing curriculum across the Republic of Ireland and the United Kingdom, it generally lacks a focus on children and young people and is not always supported by educators with professional experience of children and young people in healthcare. More work needs to focus on equipping undergraduate children's nurses with the unique skills needed to communicate effectively with children and young people and incorporate learnings into nursing pedagogy.

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BACKGROUND: Public involvement is important to the relevance and impact of health and care research, as well as supporting the democratisation of research. In 2020, the National Institute for Health Research (NIHR) reorganized and eliminated INVOLVE, an internationally recognised group that had played a central role in public involvement in the UK since 1996. Its remit was subsumed within a new center tasked with public involvement, participant recruitment, and evidence dissemination. A year later, in 2021, interested parties came together to discuss the evolution of INVOLVE and consider how to retain some of the important historical details and learn lessons from its long and important tenure. METHODS: We hosted a witness seminar in 2022 that was one of four work groups and brought together public involvement leaders that had been part of the conception, development, and evolution of INVOLVE between 1995 and 2020. Witness seminars are a method used to capture the complexity and nuance of historical events or initiatives. They support critical thinking and reflection rather than simple commemoration. We identified those who had played a role in INVOLVE history, ensuring diversity of perspective, and invited them to attend and speak at the seminar. This took place during two sessions where witnesses provided their recollections and participated in a facilitated discussion. RESULTS: Across the two online sessions, 29 witnesses attended and contributed thoughts and recollections. Two authors (SS, MP) identified six themes that were described in the witness seminar report and have been discussed, elaborated, and illustrated with witness quotations. These are: the importance of historical perspective; INVOLVE as a social movement; how INVOLVE worked (e.g. its hospitality, kindness, and inclusivity); INVOLVE as a quiet disruptor; public involvement evidence, knowledge, and learning; the infrastructure, processes, and systems developed by INVOLVE; and the demise and loss of INVOLVE as an internationally recognized center of excellence. DISCUSSION: The authors of this commentary reflected on the discussions that took place during the witness seminar and the themes that emerged, and share six broad learnings for future practice; (1) it is important to create and nurture public involvement communities of practice; (2) collaborative ways of working support open discussion amongst diverse groups; (3) be aware of the tensions between activism and being part of the establishment; (4) continued efforts should be made to build an evidence base for public involvement practice; (5) there are both benefits and drawbacks to having a centralized organization leading public involvement; and (6) support for public involvement in research requires a fit-for-purpose tendering process that embeds robust public involvement.

BACKGROUND: Involving members of the public in research can improve the way that research is planned, managed, and shared. Between 1996 and 2020 an organization in the UK called INVOLVE had an important role in public involvement in research. When INVOLVE lost this role, some people who had been part of the group got together to think about how to save some of the important information and learn lessons from the time it had existed. METHODS: A meeting was arranged where people who have been part of an event or topic get together to share what it was like for them. This was called a witness seminar and it took place online over two days in 2022. Twenty-nine people attended and spoke about their experiences. RESULTS: The people who attended the witness seminar had different ideas about why INVOLVE was important and agree that it is now missed. People talked about INVOLVE as part of a certain time in history and said it was a social movement. They felt that it was kind and caring, brought together lots of people with different ideas, and supported changes in thinking. INVOLVE had a focus on evidence and learning and created structure and systems to support public involvement in research. Losing INVOLVE was difficult because a lot of people within the UK and beyond looked to them as a leader in public involvement. We share quotes on all of these topics. DISCUSSION: In this article we looked at how people remembered INVOLVE and thought about what information could be saved. We share lessons that will support thinking about the future of public involvement. These include things like how important it is for there to be spaces for people to come together to learn, discuss, and share, and that we have more work to do to understand public involvement and fully include it in research.

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INTRODUCTION: This exploratory literature review seeks to examine the literature around commissioning processes in the co-production of health and care services, focusing on two questions: How do health and care commissioning processes facilitate and/or pose barriers to co-production in service design and delivery? What are the contextual factors that influence these processes? METHOD: A systematic search of three databases (Medline, Public Health and Social Policy and Practice) and a search platform (Web of Science) was conducted for the period 2008-2023. A total of 2675 records were retrieved. After deduplication, 1925 were screened at title and abstract level. Forty-seven reports from 42 United Kingdom and Ireland studies were included in the review. A thematic synthesis of included studies was conducted in relation to the research questions. RESULTS: The review identified one overarching theme across the synthesised literature: the complexity of the commissioning landscape. Three interconnected subthemes illuminate the contextual factors that influence this landscape: commissioners as leaders of co-production; navigating relationships and the collective voice. CONCLUSION: Commissioning processes were commonly a barrier to the co-production of health and care services. Though co-production was an aspiration for many commissioners, the political and economic environment and service pressures meant that it was often not fully realised. More flexible funding models, longer-term pilot projects, an increased emphasis in social value across the health and care system and building capacity for strong leadership in commissioning is needed. PATIENT AND PUBLIC CONTRIBUTION: Patients and the public did not contribute to this review as it was a small piece of work following on from a completed project, with no budget for public involvement.

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BACKGROUND: Children and young people's (CYP) involvement is an increasing priority in UK healthcare and in heath research, alongside recognition that involving CYP in research requires different considerations to involving adults. Underpinned by children's rights and a co-production ethos this paper, co-authored with young evaluators, explores the learning from a co-produced evaluation of eyeYPAG, a young persons' research advisory group (YPAG) for eye and vision research based at Moorfields Eye Hospital, London, UK. METHODS: A team of young evaluators, supported by the eyeYPAG facilitator, conducted focus groups and online surveys with YPAG members, their parents and carers, researchers, group facilitators and funders. Qualitative data was analysed using a collaborative reflexive thematic analysis approach. Quantitative data, limited by the small number of participants, was analysed in Excel and reported as descriptive data. RESULTS: CYP valued the social and creative aspects of the group as well as learning about research and developing skills and confidence. Learning was a two-way process, with both researchers and facilitators reflecting on how much they had learnt from working with the YPAG. All participants talked about the importance of impact, feeling that CYP are making a difference to research, as well as CYP's right to be involved. Effective planning and facilitation were key to the success of the group, in relation to accessibility and the development and delivery of sessions both online and in-person. Resourcing and administration were key challenges to this, as was engaging researchers who were not already converted to the public involvement cause. As the nature of a YPAG is that it primarily focuses on advising researcher-led projects, co-production was identified as something that the group was 'working towards', including through this evaluation. Co-producing with CYP involves building up knowledge, confidence and acknowledging power dynamics. CONCLUSIONS: Co-producing an evaluation enabled us to learn about the benefits and challenges of involving CYP in research, as well as how to involve them in the development of that evidence. An ethos of co-production and children's rights helped to shift the balance of power and develop more engaging and inclusive ways of working.

Children and young people (CYP) have a right to be involved in things that affect them, including research. There is growing interest in children and young people's involvement in health research in the United Kingdom (UK), as well as understanding that what works for CYP is often different to what works for adults. This paper presents an evaluation of the Young Person's Advisory Group (YPAG) at Moorfields Eye Hospital in London. Evaluation uses research methods to find out how well a service or project is working and meeting the needs of those who use it, and how to improve things that could be better. A group of young evaluators, supported by adult researchers, designed and ran the evaluation; three of the young evaluators also helped write this paper. In our evaluation we used focus (discussion) groups and online surveys with young group members, their parents and carers, researchers who had worked with the group, the group's facilitators (adults who help manage the group) and funders. We found that group members valued the social and creative aspects of the group as well as learning about research and developing skills and confidence. Learning was a two-way process, with both researchers and facilitators talking about how much they had learnt from working with the YPAG. All participants talked about the importance of feeling that CYP are making a difference to research, as well as of CYP's right to be involved. Planning and support were important to the group working well, but we found that having the money and time to do this well was not always easy. And, while lots of researchers were keen to work with the group, and talked about how this had helped their research, we need to do more to engage researchers who have yet to be convinced. We also found that, while we wanted to 'co-produce' the group and share power for all big decisions, this was something we had to work towards, especially when group members were young and/or new to research and involvement. Co-producing an evaluation helped us to learn about the benefits and challenges of involving CYP in research, as well as how to involve them in evaluating that involvement.

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BACKGROUND: Family interventions appear to be effective at treating young people's substance misuse. However, implementation of family approaches in UK services is low. This study aimed to demonstrate the feasibility of recruiting young people to an intervention based on an adaptation of adult social behaviour and network therapy. It also sought to involve young people with experience of using substance misuse services in the research process. OBJECTIVES: To demonstrate the feasibility of recruiting young people to family and social network therapy and to explore ways in which young people with experience of using substance misuse services could be involved in a study of this nature. DESIGN: A pragmatic, two-armed, randomised controlled open feasibility trial. SETTING: Two UK-based treatment services for young people with substance use problems, with recruitment taking place from May to November 2014. PARTICIPANTS: Young people aged 12-18 years, newly referred and accepted for structured interventions for drug and/or alcohol problems. INTERVENTIONS: A remote, web-based computer randomisation system allocated young people to adapted youth social behaviour and network therapy (Y-SBNT) or treatment as usual (TAU). Y-SBNT participants were intended to receive up to six 50-minute sessions over a maximum of 12 weeks. TAU participants continued to receive usual care delivered by their service. MAIN OUTCOME MEASURES: Feasibility was measured by recruitment rates, retention in treatment and follow-up completion rates. The main clinical outcome was the proportion of days on which the main problem substance was used in the preceding 90-day period as captured by the Timeline Follow-Back interview at 3 and 12 months. RESULTS: In total, 53 young people were randomised (Y-SBNT, n = 26; TAU, n = 27) against a target of 60 (88.3%). Forty-two young people attended at least one treatment session [Y-SBNT 22/26 (84.6%); TAU 20/27 (74.1%)]; follow-up rates were 77.4% at month 3 and 73.6% at month 12. Data for nine young people were missing at both months 3 and 12, so the main clinical outcome analysis was based on 24 young people (92.3%) in the Y-SBNT group and 20 young people (74.1%) in the TAU group. At month 12, the average proportion of days that the main problem substance was used in the preceding 90 days was higher in the Y-SBNT group than in the TAU group (0.54 vs. 0.41; adjusted mean difference 0.13, 95% confidence interval -0.12 to 0.39; p = 0.30). No adverse events were reported. Seventeen young people with experience of substance misuse services were actively involved throughout the study. They informed key elements of the intervention and research process, ensuring that the intervention was acceptable and relevant to our target groups; contributing to the design of key trial documents, ideas for a new model of public involvement and this report. Two parents were also involved. CONCLUSIONS: The adapted intervention could be delivered in young people's services, and qualitative interviews found that Y-SBNT was acceptable to young people, family members and staff. Engagement of family and network members proved difficult within the intervention and research aspects. The study proved the feasibility of this work in routine services but outcome measurement based on narrow substance use variables may be limited and may fail to capture other important changes in wider areas of functioning for young people. Validation of the EuroQol-5 Dimensions for young people aged 12-18 years should be considered and flexible models for involvement of young people in research are required to achieve inclusive representation throughout all aspects of the research process. Although recommendation of a full trial of the Y-SBNT intervention compared with TAU is not supported, this study can inform future intervention development and UK research within routine addiction services. TRIAL REGISTRATION: Current Controlled Trials ISRCTN93446265. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 21, No. 15. See the NIHR Journals Library website for further project information.

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BACKGROUND: Arguments supporting the involvement of users in research have even more weight when involving the public in systematic reviews of research. We aimed to explore the potential for public involvement in systematic reviews of observational and qualitative studies. METHODS: Two consultative workshops were carried out with a group of young people (YP) aged 12-17 years to examine two ongoing reviews about obesity: one about children's views and one on the link between obesity and educational attainment. YP were invited to comment on the credibility of themes, to propose elements of interventions, to suggest links between educational attainment and obesity and to comment on their plausibility. RESULTS: Researchers had more confidence in review findings, after checking that themes identified as important by YP were emphasised appropriately. Researchers were able to use factors linking obesity and attainment identified as important by YP to identify limitations in the scope of extant research. CONCLUSION: Consultative workshops helped researchers draw on the perspectives of YP when interpreting and reflecting upon two systematic reviews. Involving users in judging synthesis credibility and identifying concepts was easier than involving them in interpreting findings. Involvement activities for reviews should be designed with review stage, purpose and group in mind.

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BACKGROUND: A growing body of research has identified family interventions to be effective in treating young people's substance use problems. However, despite this evidence, take-up of family-based approaches in the UK has been low. Key factors for this appear to include the resource-intensive nature of most family interventions which challenges implementation and delivery in many service settings and the cultural adaptation of approaches developed in the USA to a UK setting. This study aims to demonstrate the feasibility of recruiting young people to a specifically developed family- and wider social network-based intervention by testing an adapted version of adult social behaviour and network therapy (SBNT). METHODS: A pragmatic, randomised controlled, open feasibility trial delivered in two services for young people in the UK. Potential participants are aged 12-18 years referred for drug or alcohol problems to either service. The main purpose of this study is to demonstrate the feasibility of recruiting young people to a specifically developed family and social network-based intervention. The feasibility and acceptability of this intervention will be measured by recruitment rates, treatment retention, follow-up rates and qualitative interviews. The feasibility of training staff from existing services to deliver this intervention will be explored. Using this opportunity to compare the effectiveness of the intervention against treatment as usual, Timeline Follow-Back interviews will document the proportion of days on which the main problem substance was used in the preceding 90-day period at each assessment point. The economic component will examine the feasibility of conducting a full incremental cost-effectiveness analysis of the two treatments. The study will also explore and develop models of patient and public involvement which support the involvement of young people in a study of this nature. DISCUSSION: An earlier phase of work adapted social behaviour and network therapy (adult approach) to produce a purpose-designed youth version supported by a therapy manual and associated resources. This was achieved by consultation with young people with experience of services and professionals working in services for young people. This feasibility trial alongside ongoing consultations with young people will offer a meaningful understanding of processes of delivery and implementation. TRIAL REGISTRATION: ISRCTN93446265; Date ISRCTN assigned 31/05/2013.