Daily life situations and participation of siblings of children with childhood-onset disabilities: a scoping review.

Abstract

Background: Siblings of children with disabilities or childhood-onset chronic conditions (eg, autism, cerebral palsy or congenital heart disease) often face challenges in mental health, quality of life and psychosocial adjustment. However, comprehensive knowledge of their participation in daily activities remains limited. Understanding their participation patterns and potential restrictions can help clarify their needs.

Aims and methods: This scoping review aims to summarise current research on the participation of siblings of children with childhood-onset chronic conditions. Following the Joanna Briggs Institute methodology, we systematically searched MEDLINE, CINAHL, AMED, PsycINFO and ERIC for peer-reviewed studies published in English between 2001 and 2024. Eligible studies focused on siblings of children with disabilities or early-onset chronic conditions (population) and their participation, including attendance and involvement in daily activities (concept) across children's homes, communities and schools (context). The review adheres to the Preferred Reporting Items for Scoping Reviews guidelines.

Results: A total of 62 articles met the inclusion criteria: 45 qualitative (73%) and 7 quantitative (11%) studies, 7 reviews (11%) and 3 meta-studies (5%). The studies covered various chronic conditions (eg, cancer, chronic kidney disease and Down syndrome), with autism being the most common (22 studies). Key participation themes identified include family life, home participation, school involvement, leisure activities, social interactions with peers, information-seeking and continuous meaning-making. Factors such as normalcy, advocacy, identity, gender, age, culture and socioeconomic status were found to intersect with participation.

Conclusions: This review provides a comprehensive overview of current research and contributes to our understanding of how participation in daily activities has been studied so far in the population of siblings of children with disabilities. It reveals a gap in research specifically measuring participation among siblings. The identified themes enhance our understanding of potential participation restrictions in this population.