The Role of Health Advocacy in Transitions from Pediatric to Adult Care for Children with Special Health Care Needs: Bridging Families, Provider and Community Services

• Our qualitative study engaged youth, family, health care and community service providers.
• Our work elucidated the overarching theme of navigation of complex health and community systems requiring focused advocacy of youth with special health care needs.
• Community agencies and social programs, along with clinic-based support structures are well-poised to help transitioning youth with special health care needs.

BackgroundYouth and young adults with special healthcare needs (YASHCN) experience challenges during transition from pediatric to adult care. Prior studies have not examined how community and healthcare resources can work together to assist YASHCN in transitioning from child-focused care and services to adult-oriented providers.ObjectiveThe aim of this study was to develop a theoretical understanding of how family, healthcare providers and community supports can assist YASHCN during the transition from pediatric to adult healthcare and services.Design/MethodsWe conducted 41 semi-structured interviews with YASHCN aged 16–25, their family members and healthcare and community providers. We focused our interviews on support mechanisms, both within the traditional healthcare system, and those available in the community. Using grounded theory methods, we performed a multi-step analysis process.ResultsThe theoretical code “Transition Advocacy” was developed from the data. This theoretical perspective arose from three major categories, which were developed in the analysis: “Fighting for healthcare”, “Obtaining resources”, and “Getting ready to transition”. Transition Advocacy consists of the presence of, or need for, a healthcare “advocate” who did or can assist the YASHCN with the healthcare transition, particularly to navigate complex health or community services. The “advocate” role was performed by family members, healthcare or agency professionals, or sometimes the YASHCN themselves. If advocates were identified, youth were more likely to obtain needed services.ConclusionsParents, health providers, and community agencies are potentially well-poised to assist transitioning YASHCN. Efforts to encourage development of strong advocacy skills will facilitate better transitions for YASHCN.