Perspectives on health care transition among U.S. parents of internationally adopted children living with HIV: A qualitative study

Abstract

Objective

To analyze perspectives on health care transitions among parents who have internationally adopted children living with HIV (IACH)The transition of youth with living with HIV from pediatric to adult care is associated with adverse health outcomes, including poor medication adherence and appointment attendance. However, little is known about the experiences of IACH.

Methods

This qualitative project explores the perspectives of 17 parents of 24 IACH in the United States through hour-long semi-structured phone interviews focused on healthcare transition. The purposive sample was recruited from two pediatric infectious disease clinics and private social media sites. Drawing on analytic principles of constant comparison, transcripts were analyzed for emergent themes.

Results

Most parents identified as white (n = 16), female (n = 16). Median age of IACH was 16 years. Two had transitioned to adult care. Fourteen did not have a transition plan with their provider. Many parents expressed apprehension regarding the transition to adult care. Anxiety over the ability to communicate with their child’s health provider and lack of comprehensive planning were expressed. Parents also felt their child may feel out of place in the adult infectious disease clinic and emphasized the trusting, long standing relationship with pediatric providers. Participants acknowledged that transition to another provider could be challenging for their child as adult providers may be less aware of adoption-related trauma.

Conclusion

It is vital that physicians consider trauma-informed care throughout the transition process with IACH. Providers should support health management-related independence of both IACH and their parents prior to transition. Coordination with adult care providers is key to a successful health care transition.