Transition from Pediatric to Adult Primary Care: Hearing from Youth with Special Health Care Needs

Background As more youth with special health care needs (YSHCN) grow into adulthood, a need exists to explore transition from child to adult primary care, including behavioral, mental, and reproductive health services from a youth perspective, as well as similarities and differences from a sex/gender perspective. The HRSA Office of Women's Health and Maternal and Child Health Bureau/Division of Children with SHCN, and HHS Office on Disability and Office on Women's Health, collaborated with New Editions to hold 4 Discussion Groups with YSHCN. Methods Participants were recruited through groups serving YSCHN ages 18-27. Demographic information was collected. Groups followed a semi-structured 90-minute teleconference discussion format. The team analyzed session tapes for themes. Results Fourteen youth participated (6 women, 8 men); 2 responded during 30-minute phone interviews. Defining “transition” as navigating within the adult healthcare system and moving from parent to patient-centered care was a common theme. Women focused on long-term effects of diet and exercise; violence in relationships; and reproductive health. Men focused on insurance benefits; supporting a family; and financial concerns. Conclusions The discrepancy between “transition” as defined for research/funding purposes and by YSHCN was a major finding. Participants identified the need for providers to talk to them rather than their parents. Themes specific to men and women show early evidence for a need to further explore sex-specific issues. Public Health Implications Understanding transition and navigation from the perspective of YSHCN is essential to develop supports, services and systems. Promising Practices Inclusion of YSHCN in research efforts/provider training.