Development and psychometric testing of an instrument for measuring social participation of adolescents: study protocol of a prospective mixed-methods study

Abstract

IntroductionSocial participation is an important part of a young person’s life. It influences the social experience, social-emotional development and dimensions of competence experience. This applies to people with or without physical disabilities or chronic diseases. Currently, there is no reliable assessment tool for measuring social participation of adolescents in Germany although social participation is a central goal of rehabilitation. The aim of this study is to develop, test and pilot an instrument that assesses social participation for adolescents between the ages of 12 and 17 years and to start a psychometric test.Methods and analysisIn a sequential mixed-methods study, adolescents with and without physical disabilities or chronic diseases are asked about their experiences with social participation as well as the individual significance of self-determination through semistructured interviews. The perspective of adolescents is supplemented by focus groups that will be conducted first with experts from social paediatric care and second with legal guardians. Based on this, an assessment instrument will be developed, evaluated and implemented in exemplary social paediatric centres (SPCs) and rehabilitation clinics and psychometrically tested in a pilot study.Ethics and disseminationThe study will be conducted in accordance with the principles of the revised Helsinki Declaration. The study was approved by the Ethics Review Committee at the Martin-Luther-University Halle-Wittenberg. The developed assessment instrument can be used in science to identify disadvantaged groups and to compensate for the disadvantages that could impair development. For this purpose, the results will be presented at scientific conferences and published in international peer-reviewed journals. In practice, the instrument can be used to determine the goals of rehabilitation together with the adolescents and to evaluate the achievement of these goals. For this, implementation workshops and further training will be organised and carried out in children’s rehabilitation clinics and SPCs.Trial registration numberDRKS00014739; Pre-results.

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

“…The study uses data from a research project on the ‘Development and psychometric testing of an instrument to measure social participation among adolescents’ funded by the German Research Foundation. The main objective was to develop a self-assessment participation measurement instrument for adolescents with and without chronic and/or physical-motor impairments aged between 12 and 17 years 33. In order to develop this measurement tool, it was necessary to first conduct qualitative research to understand the concept of social participation in more detail.…”

“…The main objective was to develop a self-assessment participation measurement instrument for adolescents with and without chronic and/or physical-motor impairments aged between 12 and 17 years. 33 In order to develop this measurement tool, it was necessary to first conduct qualitative research to understand the concept of social participation in more detail. Therefore, we asked adolescents 32 as well as parents of adolescents with and without chronic and/or physical-motor impairments and experts about their experiences and understandings of social participation.…”

A pilot study to develop a participation self‐assessment tool for adolescents: The Social Participation Inventory (SPI)

“…To develop a participation self-assessment for adolescents, we conducted a mixed methods study that comprised four phases (see Figure 1) (Baerwalde et al, 2019).…”

“…Based on qualitative results (Baerwalde et al, 2019) and the derived concept of participation (Bernard et al, n.d.), we developed a pilot version of the SPI, a self‐assessment tool for adolescents with and without chronic diseases and/or physical disabilities. Figure 2 displays the structure of the pilot version that was applied in the study.…”

The Adolescent Concept of Social Participation—A Qualitative Study on the Concept of Social Participation from Adolescents with and without Physical Disabilities

“…In the first step of this sequential mixed methods study, we explored the theoretical framework regarding social participation from the perspective of adolescents with and without physical disabilities or chronic diseases. The gained perspective of adolescents was then supplemented by focus groups held with experts of social pediatric care and research as well as with parents of adolescents with and without physical disabilities or chronic diseases to generate a better understanding of the concept of social participation (Baerwalde et al, 2019). This article focuses on the adolescents' views on social participation.…”