Sibling relationships are central to family life, and siblings of children with disabilities often play major caregiving roles. Yet, it remains unknown how a child's cerebral palsy (CP) impacts siblings' everyday experiences. To describe how siblings of children with CP experience participation in everyday activities and their perceived support and challenges. We used a qualitative descriptive design, semi-structured interviews with 16 families (25 siblings, 16 children with CP, 29 parents) in Switzerland, and qualitative content analysis. Siblings' participation experiences encompass (a) different types of meaningful activities; (b) distinct support needs, challenges, and feelings of being overlooked; (c) hidden tensions and ambivalent feelings when doing activities. Siblings have diverse experiences including joyful and challenging everyday activities. Tensions arise when navigating roles, family dynamics, and societal expectations. This study underscores the need to prioritize siblings' perspectives in research and practice to enhance their agency, inclusion, and well-being.Study Using Interviews With Families to Better Understand the Daily Life Experiences of Siblings of Children With Cerebral PalsyWhy was the study done? Siblings of children with disabilities play an important role, but little is known about their everyday experiences. We need to know more about how children experience everyday activities when growing up with a sibling with a childhood-onset disability, such as cerebral palsy (CP). We want to know what supports or challenges them. What did the researchers do? The researchers studied the everyday activities of siblings by interviewing siblings of children with CP and their families. They visited 16 families in Switzerland and asked about their experiences in daily life. What did the researchers find? There were three main findings: (a) Siblings do many different types of activities. Experiencing excitement, family connection, and personal independence were key motivations for doing activities. (b) Siblings described different types of support facilitating their activities, challenges hindering their activities, and feelings of being overlooked within family life. (c) Siblings experience tensions resulting from competing needs within their family and ambivalent feelings when doing activities in different social contexts. What do the findings mean? This study has identified the activities, experiences, resources, and challenges of siblings of children with CP. The findings show concrete activities that matter to siblings, relevant support strategies, and difficulties. However, their everyday activities can be complex. Siblings can be sensitive to the needs of their sibling with CP. They need to balance their own and their family’s needs. Professionals should acknowledge these complex situations. They should support the involvement of siblings in their services. They should also encourage parents to talk about siblings’ needs and involve their perspectives in decision-making, for example, about family activities. Future research needs to find out more about the factors influencing siblings’ participation and support strategies.
Linimayr et al. (Tue,) studied this question.