PC2082: Identifying Barriers to Care Transitions for Latino Children with Special Healthcare Needs

Background: As care for children with special health care needs (CSHCN) has resulted in improved outcomes, an increasing number of children survive childhood and require transition to adult care. We wondered what barriers parents and providers identified to care transitions.

Methods: We held one focus group for parents of children with CSCHN identifying Spanish as their preferred language of care, and another for primary care providers. We asked groups to identify the most significant barriers to transition of CSHCN to adult care. Meetings were transcribed, transcriptions coded, and common themes identified.

Results: Themes identified by providers were: 1) comprehensive pediatric health care (e.g. multidisciplinary clinics, care coordination) did not help parents, caregivers, and children self-advocate and progress through the health care system; 2) limited number of local providers willing to accept insurance payors (e.g. state insurance) and complex medical issues; 3) travel limitations, specifically that provided services (e.g. wheelchair vans) allowed one caregiver (or none) to come with patient, creating a situation where the patient was managing complex visits alone. As a result of these identified challenges, rural pediatric providers often continue to provide primary care to CSHCN until ages 23-25 years, with potential impact on patient access to primary care in already underserved areas.
Parents identified day-to-day stressors (balancing work, home, and the care of CSHCN), leading them to defer decision making and consideration of care transitions. Parents also cited input from support groups (which encouraged parents to “focus on today”), and the high quality of pediatric care coordination at tertiary and quaternary centers, with feelings of being unable to advocate for oneself, as potential barriers to care transitions.
Neither parents nor providers identified language concordance and access to translation/interpretation services as a barrier to care.

Conclusion: Providers identified limitations in access to care, specifically number of providers and transportation issues. Parents noted that daily stressors and demands took precedence over planning for care transitions. Both groups identified comprehensive pediatric care coordination as beneficial in childhood, but later detrimental to limited self-advocacy and the ability to navigate the healthcare system. These findings suggest that family, provider, and institutional priorities are not well aligned. There exist opportunities to optimize patient and family engagement and education and to integrate transitional care into the care of CSHCN.