What do siblings of children with disabilities need in daily life situations? : implications from a scoping review on childhood-onset disability research

Introduction: Siblings of children with childhood-onset disabilities often face daily challenges such as disruptions of family routines and a lack of support in attending hobbies or doing homework. Some report major difficulties in their mental health, quality of life, and psychosocial adjustment. Despite this, comprehensive research on their participation patterns, daily needs, and potential restrictions remains limited. Understanding these patterns and influencing factors is essential for enhancing family-centered care and developing effective support strategies. To address this gap, a scoping review of research on siblings’ participation in everyday activities was conducted. Methods: The review was conducted following the Joanna Briggs Institute methodology. A systematic search of MEDLINE, CINAHL, AMED, PsycINFO, and ERIC identified peer-reviewed studies published between 2001 and 2024. Inclusion criteria focused on siblings of children with childhood-onset disabilities or chronic conditions, exploring their participation across home, school, and community settings. Findings were collaboratively translated into a family-friendly factsheet with parents of children with disabilities and typically developing children. The factsheet will be piloted, refined, and provided in English, German, French, and Italian. Results: The review included 62 studies: 45 qualitative (73%), seven quantitative (11%), seven reviews (11%), and three meta-studies (5%), covering a range of chronic conditions, with autism being the most frequently studied (22 studies). Key participation themes included family life, school involvement, leisure activities, peer relationships, information-seeking, and meaning-making. Factors such as advocacy, identity, age, gender, culture, and socioeconomic status intersected with siblings’ participation experiences. The collaboratively developed factsheet highlights siblings’ needs and was designed to facilitate family conversations focusing on the siblings. Conclusion: This scoping review provides critical insights into the participation of siblings of children with disabilities, identifying key themes and influencing factors. The collaborative creation of a family-friendly factsheet demonstrates the value of translating research findings into actionable tools that support families. Its potential for distribution and practical use will be discussed. The findings emphasize the importance of addressing siblings’ needs to strengthen family-centered care.