Advisor(s)

Shena Gazaway
J Nicholas Odom

Committee Member(s)

Louise Fleming
Sara Hallowell
Wendy Landier

Document Type

Dissertation

Date of Award

6-1-2026

Degree Name

Doctor of Philosophy (PhD)

School

School of Nursing

Department

Nursing

Abstract

Congenital adrenal hyperplasia (CAH) is a group of disorders characterized by enzyme deficiencies impairing adrenal hormone production and requiring lifelong management. Individuals with CAH experience increased morbidity and mortality due to the underlying condition, steroid exposure, and inadequate preventative care. Despite clinical guidelines recommending a structured healthcare transition (HCT), little is known about the HCT experiences of emerging adults with CAH. Understanding these experiences is critical for identifying practice gaps and developing interventions to improve health outcomes. This qualitative descriptive study explored the HCT experiences, challenges, and outcomes of emerging adults with CAH, as guided by the refined Social Ecological Model of Adolescent and Young Adult Readiness for Transition (SMART). The literature review included: (1) an evolutionary concept analysis on the parental entrustment of healthcare responsibilities, (2) a scoping review of the SMART model’s application in HCT research, and (3) a scoping review of HCT research specific to CAH. These manuscripts established the study’s theo-retical foundation, informing the research questions and methodological approach. Following Institutional Review Board (IRB) approval, 24 participants were recruited through network sampling, including outreach through advocacy organizations’ social media platforms and adult endocrinologists. Semi-structured interviews were conducted, recorded, transcribed, and analyzed using hybrid thematic analysis. Deductive coding was informed by the refined SMART framework, while inductive coding captured emergent themes. Methodological rigor was maintained through member checking, audit trails, and researcher reflexivity. Findings revealed that HCT for individuals with CAH is a multidimensional pro-cess shaped by interacting individual, relational, and health system factors. Participants described caregiver-mediated pediatric care, variable preparation for independent management, and informal or poorly coordinated transfer processes. Adult care experiences were frequently characterized by fragmented health services, administrative barriers, limited provider familiarity with CAH, and reliance on self-advocacy. Many participants reported cyclical engagement with specialty care, often reentering the healthcare system during acute illness or crisis events. Participants also described the integration of CAH management into adult identity, relationships, and life planning. These findings provide important insights into current gaps in HCT practices for CAH and highlight opportunities to improve transition support and care continuity to promote long-term health and quality of life.

Keywords

chronic condition;congenital adrenal hyperplasia;health outcome;healthcare transition;qualitative research

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