Kristin Liabo

Background Patient and public involvement (PPI) is increasingly considered an integral part of health research, and the focus has shifted from why we need PPI to how users can be involved in a meaningful way. The rationale for investigating experiences with PPI from the perspective of occupational therapy (OT)‐trained researchers' originates in the interrelationship between the inclusive approach to knowledge production, and participation and inclusion as core tenets of OT. The aim of this study was to explore PPI in health research from the perspective of OT‐trained researchers. Method Semi‐structured individual interviews were conducted online with nine Norwegian researchers. The interviews were analysed using reflexive thematic analysis. Results Professional background and clinical experience from person‐centred OT formed the foundation for how these researchers approached and facilitated PPI in their research. Valuing experiential knowledge and facilitating PPI to be meaningful for public collaborators were highlighted as essential for PPI to have an impact. The need to balance mutual expectations, requirements for research, and what might be possible to achieve within a research study were found to be vital. Conclusion Collaborative clinical experience constituted a sound foundation for implementing PPI in research. The occupational perspective underlines the importance of acknowledging experiential knowledge as essential to facilitating meaningful PPI. Challenges related to requirements for research and culture for implementing PPI were addressed by clarifying roles and expectations. Patient or Public Contribution Three public collaborators were involved in developing the aims, the interview guide, and the data analysis. They all had previous experience being involved in research.

Children and young people have much to contribute to the design and delivery of health research and care. Nevertheless, there are multiple barriers to meaningful and impactful involvement of children and young people. This narrative review synthesised existing literature on the involvement of children and young people as partners in health research. Authors screened electronic databases and reference lists to identify relevant studies. Data were extracted on how involvement was described, what young people contributed to, and the impact of their involvement. The review identified 15 reports; these reported researcher observations and findings from focus group discussions and questionnaires about the involvement. Impacts recorded in these studies included influence on research; outputs from involvement activities; shifts in researchers’ attitudes; a sense of achievement in young people; and fulfilling relationships. These impacts were associated with principles being followed: building relationships over time to allow for unexpected involvement in the research, flexibility so young people could contribute in ways that work for them, and training. Methods adapted to be youth-appropriate such as visual aids and icebreaker games also enabled impact. Impactful involvement relies on processes that respond to young people’s preferences for engagement and activities that support them to share their views.