Pediatrician Perceived Barriers to Caring for Children With Special Health Care Needs in California

Background: Children with special health care needs (CSHCN) require significant care from both primary care and subspecialty pediatricians.  Primary care physicians are expected to provide holistic care for these patients but may not have the resources to take on CSHCN in their practice. The purpose of this study is to determine factors that prevent pediatricians from caring for all needs of CSHCN and policy relevant strategies for delivering high quality care.

Methods: We conducted focus groups and semi-structured interviews with 39 key informants purposively selected from a broad stakeholder group of pediatricians, parents, nurses and American Academy of Pediatrics leaders. We performed a multi-step qualitative analysis process, which included open coding with secondary-level coding for important themes.

Results: A major category that emerged was fragmented health care. Informants emphasized the need to bridge primary and subspecialty care and community organizations (i.e. schools), through communication, care coordination and integration. More importantly, it was the role of the child’s primary locus of care to facilitate this coordination. However opinions differed on the appropriate locus of care for CSHCN (primary care, subspecialist pediatrician or multispecialty clinic). Improved technology (e.g. EMR, telemedicine) is one potential strategy that could decrease fragmentation.

Conclusions: Pediatrician and practice level barriers, especially in the context of fragmented systems of care, impede the delivery of care to CSHCN. Bridging systems of care, with the primary care or subspecialist pediatrician, or multispecialty clinics serving as the locus of care, is critical for delivering high quality care to CSHCN.