For colleagues

Overview

In a sequential mixed-methods study, adolsescents with and without physical disabilities are asked about their experiences and satisfaction with social participation as well as about the individual meaning of self-determination via semi-structured interviews. The perspective of the adolescents is supplemented by focus groups, on the one hand with experts from social pediatric care and associated research fields and on the other hand with legal guardians (eg parents). Due to these different perspectives, the biggest possible insight is gained for the development of the assessment tool, which also includes the current international findings. Based on the results of the first step, an assessment tool will be developed close to the target group, evaluated by the target group of adolescents and the interprofessional experts in the paediatric pathways of care, then implemented in a pilot study in exemplary social pediatric centers and rehabilitation clinics and psychometrically examined.

The study design

The study is planned as a sequential mixed-method study. To understand the complex construct of participation and its multiple layers, a qualitative design is first required. The exploratory approach in this study offers the opportunity to reconstruct the practice-related experiences and perspectives of the adolescents, their legal guardians (eg, parents) and interprofessional experts in the paediatric pathways of care. Subjectively perceived needs from the clinical practice can be explored to derive the require- ments for an assessment tool. In terms of counteracting the phenomenon of cognitive dissonance reduction with its concomitant adaptive preference mechanism, meaning that goals are adapted to possibilities, the perspective of adolescents with and without disabilities or chronic diseases will be fully explored.

The study will take place in four phases (figure 1). The first phase will contain data collection of semistructured interviews and focus groups. The analysis of the inter- views will be followed by the development of a survey questionnaire which will be implemented and evaluated in a pilot study as well as checked psychometrically in this last phase.

Figure 1: Study Phases

Recruitment into the trial will start in February 2019, and the study is due to finish by October 2021.