Participation of adolescents with and without physical disabilities and chronic diseases: A comprehensive conceptualization.

BACKGROUND: In 2001, the International Classification of Functioning and Disability (ICF) introduced participation as a main goal of rehabilitation processes. However, to date, a comprehensive concept of participation in the rehabilitative context is missing, particularly in German-speaking countries. We thus aimed to refine and extend the existing concepts of participation in this brief communication. METHODS: In preceding studies, we conducted semi-structured interviews with adolescents who either had chronic diseases and/or physical disabilities or had no impairments and focus groups with parents and experts. Based on these diverse perspectives and findings, we refine the term participation. RESULTS: Participation is a construct that is embedded in a social context and consists of objective (i.e., attendance) and subjective (i.e., satisfaction and involvement) dimensions. These dimensions are reflected in different domains and areas that are relevant to adolescents' lives. In addition, the subjective relevance of respective areas in life needs to be regarded as a weighing component when evaluating participation. CONCLUSION: Our results reflect international models on participation, refine the existing concept, and underline the multidimensional character of participation. These findings are urgently needed to develop appropriate instruments, for example, for assessing whether rehabilitative processes are effective regarding the goal of participation.

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

OBJECTIVE: Participation is one of the key goals of re/habilitative processes. Since participation impacts adolescents' social-emotional development and overall health, this goal is particularly important for them. However, to date, no German-speaking self-assessment tool for participation among adolescents is available. This study sought therefore to develop such a tool and to test its psychometric properties. METHODS: Based on a preliminary qualitative study, we developed 133 items for a pilot version of the Social Participation Inventory (SPI). The SPI assesses the objective dimension (i.e., attendance) and the subjective dimension (i.e., involvement and satisfaction) of participation. To test the psychometric properties of the SPI, we conducted a quantitative cross-sectional survey and applied the SPI to n = 151 adolescents with and without disabilities and/or chronic diseases. RESULTS: By using principal component analyses, we examined the SPI's consistency and verified the theoretical considerations regarding the two components of participation (i.e., objective and subjective dimensions). Items that did not load sufficiently on components were removed after careful theoretical-based consideration. The condensed version of the SPI consists of 39 items that assess participation and 18 items to assess the perceived importance of respective areas of life. The SPI shows very good overall reliability (Cronbach's α = .920) and good validity. CONCLUSION: This study provides a new psychometrically tested participation self-assessment scale for adolescence with and without disabilities and/or chronic diseases. Further research is needed to re-evaluate its psychometric properties and to evaluate the application of the SPI in clinical and scientific contexts.

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.

Translation and cross-cultural adaptation of the young children participation and environment measure for its use in Austria, Germany, and Switzerland.

Background: Concepts such as participation and environment may differ across cultures. Consequently, cultural equivalence must be assured when using a measure like the Young Children Participation and Environment Measure (YC-PEM) in other settings than the original English-speaking contexts. This study aimed to cross-culturally translate and adapt the YC-PEM into German as it is used in Germany, Austria, and Switzerland. Methods: Following international guidelines, two translations were compared, and the research and expert team made the first adaptations. Twelve caregivers of children with and without disabilities from three German-speaking countries participated in two rounds of think-aloud interviews. Data were analyzed by content analysis to look for item, semantic, operational, conceptual, and measurement equivalence to reach a cultural equivalence version in German. Results: Adaptations were needed in all fields but prominently in item, operational, and conceptual equivalence. Operational equivalence resulted in graphical adaptations in the instructions and questions to make the German version of YC-PEM, YC-PEM (G), more user-friendly. Conclusion: This study presents a cross-cultural translation and adaptation process to develop a German version of the YC-PEM suitable for Germany, Austria, and Switzerland. A culturally adapted YC-PEM (G) is now available for research, practice, and further validation.