The transition of youth with HIV from pediatric to adult care is associated with multiple adverse health outcomes including poor medication and appointment adherence. However, little is known about the experience of the growing population of internationally adopted children living with HIV (IACH). IACH may have adoption-related trauma and challenges that could impact their transition readiness. This qualitative project aims to understand parents’ perspectives on care and preparation for transition of their IACH.
Twenty-three parents of IACH from 14 states in the United States completed hour-long audio-recorded semi-structured phone interviews focused on view of healthcare transition. The purposive sample was recruited from two pediatric infectious disease clinics and a private Facebook group. Interview transcripts were coded for emerging themes using standard qualitative methods.
Most parents identified as white (n=22), female (n=22), and Christian (n=22), with a mean age of 42.7 years. On average each parent had 2 biological children and 2.8 adopted children. Of the 29 IACH (16 male, 13 female), all were virally suppressed. Sixteen IACH were adopted from countries in Africa. The mean age at adoption was 5.5 years (range 6 months-15 years). Mean age at time of parental interview was 12.7 (range 1-24 years) and two of IACH had transitioned to care in an adult infectious disease clinic. Findings indicated that health care transition is not often discussed; 20 did not have a transition plan with their provider. Many parents expressed apprehension regarding the transition to adult care. One parent noted, “I feel like we’re approaching a cliff.” Anxiety over the ability to communicate with their child’s health provider and lack of comprehensive “one-stop shopping” were identified as concerns. Parents also felt their child may feel out of place in the adult infectious disease clinic due to their age. Indeed, one parent tried to establish care for her adolescent at an adult clinic and was told by a clinic scheduler that “it's maybe not the place you want to be with your young child.” Parents emphasized the trusting relationship with pediatric providers due to the longstanding care received. One remarked “they've been through every stage of her life.” Participants acknowledged that transition to another provider could be challenging for their child as adult providers may be less aware of adoption-related trauma.
Health care transition is an important, and inevitable, process in the lives of IACH. Parents do not feel well prepared for the transition to adult care. The transition represents not only a loss of access to pediatric care, but also a shift in their relationship with their child. It is vital that physicians consider trauma-informed care throughout the transition process with IACH. Providers should scaffold health management-related independence of both IACH and their parents prior to transition. Coordination and communication with adult care providers is key to a successful health care transition. Future research should include longitudinal studies that follow IACH as they transition to adult care and directly account for their perspectives.
Sources of Support
Elon Summer Undergraduate Research Experience, Elon Honors Fellows.
© 2022 Published by Elsevier Inc.