Date of Conferral

2019

Degree

Ph.D.

School

Public Policy and Administration

Advisor

Michael Brewer

Abstract

Compared to their typically developing peers, adolescents, and emerging adults with special healthcare needs (AEA-SHCN) disproportionately experience healthcare transition (HCT) disparities and poor access to adult care. Theoretical models that describe how access gaps develop and strategies to address unmet HCT needs are not well understood. While HCT researchers describe both system and patient healthcare barriers, a comprehensive approach that discovers how these factors interact and interfere remains misunderstood. An integrative review (IR) was conducted to understand the multiplicity of these factors. An intersectional theory (IT) provided further clarity on how key findings influence patient HCT experiences. Several themes were found to intersect and thus increase the HCT complexity, particularly for patients with social disadvantages. Communication gaps, mismatched goals/expectations, and poorly defined roles were common themes. Poor health equity, disparities in access, and inadequate HCT support intersected with poor patient HCT experiences, while youth with stigma-related diseases were most at-risk for poor provider-relationships. The thematic synthesis provided granularity to these experiences with characterizations as fear, loss, and uncertainty with access change. Social change implications underscore the need to reframe poor patient HCT experiences as potential opportunities for health policy advocates and clinicians to address unmet HCT needs.

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