Supporting Participation in Leisure of Children and Young People with Neurodisability: Developing a Programme Theory for Building Allied Health Interventions

Abstract

Participation in leisure is important for children and young people’s social inclusion and physical and mental health. However, children and young people with neurodisability are restricted in leisure participation compared to their non-disabled peers. This research aimed to develop an allied health intervention for supporting participation by: (i) developing a relevant and useful definition of participation in leisure, (ii) identifying modifiable personal and social environmental factors influencing participation, (iii) specifying intervention techniques, and (iv) describing acceptable, feasible ways to deliver the techniques in National Health Service (NHS) settings. The research drew on behaviour change theory and evidence, the World Health Organization’s International Classification of Functioning, Disability and Health, and the Medical Research Council’s guidance on complex intervention development. The methods were a quantitative systematic review (n=18 papers), a qualitative study (focus groups, semi-structured interviews, go-along interviews, and a workshop, n=32 stakeholders), an online Delphi study (n=68 stakeholders), and two embedded co-production projects. Stakeholders were children and young people, parents, allied health and short breaks professionals, sports coaches, and researchers. Rather than one definitive intervention as was originally planned, the main output was a comprehensive programme theory of supporting participation in leisure to be used for developing multiple interventions tailored to local contexts. The programme theory defines participation as children and young people attending leisure settings for the first time and exploring activities. It includes four personal factors (e.g. children and young people’s emotions, goals), six social environmental factors (e.g. parents’ goals, beliefs), four features of the local leisure context likely to influence implementation of participation support, and 45 intervention techniques with detailed description of acceptable and feasible delivery. Future research should translate these results into an accessible intervention manual. Feasibility testing should explore use of the manual in NHS settings, measurement of potential effects, and designs for definitive evaluations of interventions.