What does social participation mean? A qualitative study exploring the concept of participation from the perspectives of experts and parents

OBJECTIVES: This study aimed to assess the theoretical framework regarding social participation from the perspectives of experts and parents of youth aged between 10 and 17 years, and therefore, provides new insights into the concept of social participation. DESIGN: A qualitative study was conducted to understand the construct of social participation in more detail. Eight focus groups were held with experts (n=21) and parents (n=24) and analysed based on content analysis. PARTICIPANTS: We used purposive and snowball sampling to obtain a comprehensive sample of (A) parents of adolescents with and without chronic and/or physical-motor impairments and (B) experts involved in participatory research and/or treatment of adolescents with chronic and/or physical-motor impairments. The final sample consisted of 3 focus groups with a total of 21 experts and 5 focus groups with 24 parents. This included 10 parents who had disabled children. RESULTS: The concept of social participation consists of subjective and objective components. The focus from the experts’ perspective is clearly on the subjective level; that is, revolving around the question ‘Does the adolescent feel involved?’ In contrast, the parents’ focus is more on normative expectations. The possibility of participation in all areas of life through the adjustment of environmental factors was identified as a central factor. CONCLUSIONS: The results underline the importance of the subjective feelings of adolescents, as well as the significance of normative requirements. To capture the subjective component of participation, suitable measurements are needed. TRIAL REGISTRATION NUMBER: DRKS00014739.