The ‘sound of participation’ with siblings' voices. Understanding participation of siblings of children with cerebral palsy, their roles in daily family life, and intersections of family factors in Switzerland: A study protocol

Abstract

Introduction: While many studies showed that children with cerebral palsy (CP) experience participation restrictions, information about their siblings' participation is rare: Some studies indicate that they experience difficulties due to limited time, financial resources, or barriers to joint activities with their sibling with disability. The aim of this project is to explore the participation experiences of siblings of children with CP in Switzerland and to examine how this relates to their family. Participants and Methods: The project is nested within the ‘Parti-CP’ mixed-methods study funded by the Swiss National Science Foundation (SNF) and includes three studies: (1) A scoping review following JBI methodology to identify existing knowledge on the participation of siblings of children with disabilities or chronic conditions; (2) a qualitative study using semi-structured interviews to explore siblings' subjective experiences and roles in daily family life; and (3) a national representative survey assessing siblings' participation in daily life in relation to other factors (e.g. age, gender, gross motor ability of child with CP, parents' socioeconomic status). Participants will be recruited via the Swiss Cerebral Palsy Registry including siblings of children with CP and their families from different parts of Switzerland. Results: First insights from the scoping review and preliminary topics that were mentioned in the interviews will be presented. Conclusions: This study protocol is the first that targets the participation of siblings of children with CP in Switzerland. Siblings' voices need to be better understood to enhance family-centered approaches in practice and research and optimize family participation.