The invisible children? - The wellbeing of siblings of children with special health care needs

Abstract Background Globally, it has been estimated that 10 to 25 percent of children under 18 years of age old have a special health care need. Having a sibling with special health care needs can have diverse effects. This study describes existing literature on the health and well-being of siblings of children and youth with special health care needs (CYSHCN). Methods This scoping review of reviews includes a comprehensive search of reviews focusing on the health and well-being of siblings of CYSHCN. We searched the Scopus and Epistemonikos databases from 2014 to 2024 and found 8648 unique results. Results 25 articles met our inclusion criteria. Three major themes were identified: siblings as carers and invisible family members, positive effects of growing up with CYSHCN, and psychosocial challenges. Some findings indicated siblings felt marginalized and neglected in their families. The siblings take on increased responsibilities, which can influence their wellbeing. While developing greater empathy, patience, and maturity, many experienced psychological issues such as anxiety. Social difficulties, such as lower overall social wellbeing, behavioral problems and challenges at school are also more common than for siblings of typically developing children. Girls, older siblings and minorities showed higher risk of negative effects. Evidence on physical health challenges was limited. Results on quality of life varied by child's condition and the severity of it. Conclusions Siblings CYSHCN face significant challenges and require support. However, the positive aspects of growing up with CYSHCN are equally meaningful. Professionals working with these families should focus on supporting siblings as individuals. Further research is needed on the siblings’ physical health, as well as how their intersecting roles within the family and society affect their wellbeing. Supporting these families better requires research on the pathways behind the outcomes. Key messages • Siblings of children and youth with special health care needs (CYSHCN) face significant challenges, but also experience meaningful personal growth. Siblings should be supported as individuals. • More research is needed on the physical health of siblings of CYSHCN. There is also a need for intersectional research to inform better public policies.