Abstract
BACKGROUND: This study sought to examine how adolescents and young adults with special health care needs (AYA) prepare for managing medical insurance (private and public) as an adult and the role of insurance in locating an adult provider and engaging in care. METHODS: Twenty-eight AYA aged 18-24 years with renal, inflammatory bowel, or rheumatologic diseases completed individual semi-structured interviews designed to evaluate the impact of insurance (private vs. public) on their health care transition experiences. An interdisciplinary team of coders analyzed transcripts using The Framework Method. RESULTS: Three themes emerged: continuum of accepting health insurance responsibility; the impact of insurance on managing health while transitioning to an adult provider; and how insurance systems affect transition. AYA described a continuum of the adolescent increasing health insurance responsibility, which was paralleled by their parent/caregiver's continuum of decreasing insurance responsibility. Both publicly and privately insured AYA faced difficulties in transition related to insurance and reported that insurance was a key deciding factor in locating providers and centers to receive care. Regardless of insurance type, some AYA also described financial difficulties affording care. CONCLUSIONS: Health insurance is a complex system that affects AYA's ability to manage their health and transition to adult-based care. Evidence-based interventions to improve AYA and parent/caregiver health literacy knowledge and skills about health insurance prior to transition to adult-based care are needed. Improvement in health insurance literacy could improve transition readiness for entering adult care, which could in turn improve health outcomes.