Background and objectives: Families of children with special health care needs (CSHCN) have reported to benefit from social, emotional, and informational support from other families (peer support) with similarly affected children. Pediatric subspecialists often serve as the primary medical providers for CSHCN, as well as educators for these children's families. The extent to which subspecialists refer families to sources of peer support is unknown.
Methods: A statewide online survey of California pediatric subspecialists investigated opinions about the potential value and challenges of peer support. Data was obtained on the frequency with which families in their practices were referred to peer support, practice characteristics, and personal demographics. Weighted data, descriptive statistics, and regression models were used to characterize and predict factors affecting referral services.
Results: There were 388 respondents, a response rate of 14.5%. Subspecialists were generally unfamiliar with peer support resources in their communities, but many more knew of peer support programs in their institutions. Most (> 85%) held positive views about peer support, though only 40% of practices often referred families for such support. Individual opinions did not predict practice referral processes for peer support which were more influenced by knowledge of resources, and availability of time, staffing, and institutional peer support resources.
Conclusion: Offering referral to peer support services is compatible with pediatric subspecialty care. Educating physicians about available resources, assigning responsibility, providing staff time for referring families, and incorporating parent mentors into subspecialty practices can increase access. Future studies of families' referral experiences are needed.
Significance: WHAT’S KNOWN ON THIS SUBJECT: Parent-to-parent peer support resources for families with children with special health care needs are highly valued and available in every state. Pediatric subspecialists who care for these children and families are uniquely positioned to facilitate referrals to these support services.
What this study adds: Pediatric subspecialists in California hold nearly universally positive attitudes about peer support, but their practices refer only about 40% of families often or very often for this service. Educating practice staff, assigning responsibility, and engaging family mentors could increase referrals.
Keywords: Care coordination; Children with special health care needs; Pediatric subspecialty care; Peer support.
© 2024. The Author(s).