Youth experience matters: participation in physical activity by young people with physical disability. A protocol for a national participation snapshot and Delphi consensus study

Abstract

Young people with physical disability experience challenges to being physically active. To attain the health benefits of physical activity (PA) and sustain engagement, it is essential that participation is meaningful and enjoyable. This study aims to understand “what really matters” for participating in PA, from the perspectives of adolescents with physical disability. A parallel convergent mixed methods study will be undertaken, comprising a national cross-sectional quantitative assessment of PA participation (“Participation Snapshot”) and Delphi consensus study (“Delphi”). Young people (n=100) aged 13-17 years with a primary physical disability diagnosis will be invited to take part. The Participation Snapshot primary outcome is the Children’s Assessment of Participation and Enjoyment (CAPE). Contextual factors including disability diagnosis, demographics, mobility (Functional Mobility Scale), hand function (Manual Ability Classification System) and health related quality of life (Child Health Utility 9D) will also be collected. The Delphi will comprise two to four survey rounds, until consensus is reached. Round 1 (“Your Experience”) consists of a bespoke survey, designed and piloted with a public and patient involvement (PPI) panel, with open-ended questions and Likert scales inviting contributions from young people on their prior experience, barriers and facilitators, and ideas on participation in PA.  Responses will be analysed using reflexive thematic analysis to construct the key themes, conceptualized under the “F-words” framework of the International Classification of Functioning, Disability and Health (ICF). These themes will be presented back to participants in subsequent rounds for selection and ranking, until consensus is achieved on the “top 10 priorities”. The project team and PPI panel will then co-design dissemination material and identify targets for dissemination to relevant stakeholder or policy groups. The findings will provide a basis for developing interventions aiming to empower, encourage and sustain future physical activity participation in a meaningful way by young people with physical disability.