Patient and Public Involvement in Youth Mental Health Research: Protocol for a Systematic Review of Practices and Impact

Abstract

Various health settings have advocated for involving patients and members of the public (PPI) in research as a means to increase quality and relevance of the produced knowledge. However, youth PPI has been an understudied area. This protocol paper describes a new project that aims to summarize what is known about PPI with young people in mental health research. In line with the Preferred Reporting Items for Systematic reviews and Meta-Analyses Statement guidelines we will identify and appraise suitable articles and extract and synthesize relevant information including at least two reviewers at each stage of the process. Results will be presented in two systematic reviews that will describe (a) how youth PPI has been conducted (Review1) and (b) what impact youth PPI had on the subsequent research and on stakeholders (Review2). To our knowledge, this is the first set of reviews that uses a critical appraisal tool, which is co-developed with children and young people. Findings from this project will provide valuable insights and set out the key steps to adopting adequate PPI methods when involving children and young people in mental health research.

‘Including us, talking to us and creating a safe environment’—Youth patient and public involvement and the Walking In ScHools (WISH) Study: Lessons learned

“…Young people can be valuable partners in research as they can provide a unique perspective, on how research should be carried out. 16 , 49 The methods used for conducting PPI activities with adult populations may not be appropriate for young people and often there is a need to adapt existing methodologies. 50 Youth PPI is a developing field and there have been limited reports of involving young people in the development of health interventions 20 and in particular, physical activity interventions.…”

Overcoming challenges of embedding child and youth mental health research in community NHS services

“…The call to improve how PPIE is conducted within the field of CYP mental health research is also not new. Many commentators have noted limitations with current PPIE practices, including tokenism, starting consultation too late in the research development process, challenges of involving younger children and the difference between more passive consultation-based models and models of meaningful youth co-production such as the PPI Youth Café (Ashton, 2017; Sales et al , 2021; Thomson et al , 2022).…”

“…consultation-based models and models of meaningful youth co-production such as the PPI Youth Café (Ashton, 2017;Sales et al, 2021;Thomson et al, 2022).…”

Participatory research with carers: A systematic review and narrative synthesis

“…A narrative synthesis approach incorporated difference through flexibility and multiple stages, but the process must be clearly documented. 42 Theoretical frameworks can structure this interpretive process, 176,178 but the range of methodologies included in this review made it difficult to select models or quality assessment tools that suited all of these approaches. For example, categories in the 'levels and stages of user involvement' 43 was difficult to apply to photovoice, and the MMAT 41 T A B L E 4 Recommendations for facilitating effective carer involvement.…”