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.

Background: Health care transition (HCT) for adolescents and emerging adults (AEA) with special health care needs is an emerging field of interdisciplinary field of practice and research that is based upon an intergenerational approach involving care coordination between pediatric and adult systems of health care. Informed understanding of the state of the HCT science pertaining to this group of providers is needed in order to develop and implement service programs that will meet the comprehensive needs of AEA with special health care needs. Methods: The authors conducted a systematic review of the literature on the transition from child to adult care for adolescents and emerging adults (AEA) with special health care needs from 2004 to 2013. Fifty-five articles were selected for this review. An adaptation of the PRISMA guidelines was applied because all studies in this review used descriptive designs. Results: Findings revealed lack of evidence due to the limitations of the research designs and methodology of the studies included in this systematic review. Study findings were categorized the following four types: adult provider competency, provider perspectives, provider attitudes, and HCT service models. The discipline of medicine was predominant; interdisciplinary frameworks based upon integrated care were not reported. Few studies included samples of adult providers. Conclusions: Empirical-based data are lacking pertaining to the role of providers involved in this specialty area of practice. Evidence is hampered by the limitations of the lack of rigorous research designs and methodology.