Siblings of young children with congenital heart disease: parent perspectives from a crowdsourcing study.

Abstract

Objective: To gather parents' perspectives on the experiences of siblings of young children with congenital heart disease (CHD), the impact of CHD on siblings, and the types of resources and supports they need to adjust to CHD within their family.

Methods: A community advisory council guided the study. Parents of children with CHD, currently 1-7 years old, who had surgery in their first year of life, were eligible for participation if they were fluent in written English and had internet access. Recruitment through several CHD-specific nonprofit organizations produced a national sample of parents (N = 108). Of the 73 who had non-bereaved heart-healthy children, 59 (81%) provided sibling-relevant data for this study. Most parents were non-Hispanic White (n = 54; 91.5%) mothers (n = 41; 69.5%; Mage = 36.10; SDage = 5.0) reporting on siblings older than the child with CHD (n = 44; 74.6%). Data were qualitative, collected through crowdsourcing, and coded to distill themes.

Results: Three themes emerged: (1) CHD directly affects siblings' psychosocial functioning and daily activities, (2) CHD alters roles and relationships within the family, with impacts to siblings, and (3) families seek and appreciate support for heart-healthy siblings from extended family and friends, the healthcare team, and the community, but resources are variable.

Conclusion: Parents described specific ways that CHD impacts their heart-healthy children, including their psychosocial functioning, role in the family, and support from the community. Findings highlight the need for family-centered care in CHD, including screening to identify siblings at risk for psychosocial difficulties and provision of appropriate supports to meet sibling and family needs.