Engaging in purposeful patient and public involvement with young people living with obesity: recommendations from the ARROWS residential weekend

Background

The ENHANCE (Evaluating the NHs engLANd Complications of Excess Weight Services for Children and Young People) study is a national evaluation of the Tier 3 complications of excess weight (CEW) services for children and young people living with obesity. Living with obesity can be linked to wider complex physical and mental health challenges, so it is crucial to incorporate the voice of those with lived experience to inform the evaluation. The value of involving patients and members of the public in research is recognised, however there are limited resources around how to meaningfully involve children and young people living with obesity in research, as well as a lack of practical guidance around delivery and impact.

Methods

This article details the novel residential approach (including classroom sessions and teambuilding exercises) implemented in the ENHANCE evaluation to better engage young people and their families in the research. The aim was to build relationships, trust and confidence between attendees, and to learn from their lived experiences to inform the development of the evaluation. After the residential, attendees completed evaluation forms and de-brief sessions.

Results

Eight young people, seven parents, one carer and six researchers attended a residential weekend in October 2024. The weekend included one overnight stay and a range of research and team building activities. Based on feedback from all attendees, the residential had a positive impact on families and helped to improve the evaluation. Feedback from families developed recommendations for designing residentials as part of study.

Conclusion

This paper reports the process of designing the residential weekend, important considerations for delivery and the impact on young people, parents and carers with lived experience and the researchers. Advice and recommendations are provided to support other researchers to develop strong, innovative and purposeful patient and public involvement in their research.

ENHANCE (Evaluating the NHs engLANd Complications of Excess Weight Services for Children and Young People) is a national evaluation of Tier 3 weight management services for children and young people across England. Living with obesity can be linked to many physical and mental health challenges, and so it is important to include those with lived experience in this evaluation. The value of involving members of the public in research is well-known, however there is often a lack of practical guidance around how to effectively involve children and young people in research studies. The ENHANCE study team organised a residential trip to bring together patient and public involvement members. The aim was to build relationships, trust and confidence between attendees, and to learn from their lived experiences. Eight young people, seven parents, one carer and six researchers attended a residential weekend in October 2024. The weekend included one overnight stay and a range of research and team building activities. Based on feedback from attendees, families enjoyed attending and the discussions and activities over the weekend helped to improve the design of the research. This paper explains how the residential trip was designed and planned. It also explores the impact on young people, parents and carers with lived experience, the researchers and the impact on the evaluation. Advice and recommendations are provided to support other researchers to use valuable patient and public involvement activities.