November 18, 2009
Thanks to life-extending therapies, "transitioning the medical care of children with perinatally acquired HIV from pediatric care to internal medicine practices has become increasingly important," the authors noted. Their work in the current study "aims to describe challenges to caring for these adolescents and the potential barriers to transitioning them to internal medicine-based care."
The researchers undertook a qualitative study in which data were gathered from open-ended interviews conducted between November 2005 and April 2006 with 18 HIV-positive adolescents, 15 of their parents, and nine pediatric health care providers from the Yale Pediatric AIDS Care Program in New Haven, Conn.
In both challenges to care and barriers to transitioning care, stigma played a prominent role. The researchers identified these challenges to care: (1) poor adherence to medication regimens; (2) adolescent sexuality; and (3) disorganized social environments.
The identified potential barriers to transitioning care were: (1) families' negative perceptions of and experiences with stigma of HIV disease, which undermined the desire to meet new providers; (2) perceived and actual lack of autonomy - pediatric providers expressed fear that staff in adult clinics would demand a level of independence that adolescents did not have; and (3) difficulty in letting go of relationships. In this last challenge, adolescents, guardians, and providers "described a familial relationship and expressed anxiety about terminating their relationships."
"Understanding these challenges and barriers can inform both pediatric and adult HIV care providers and enable them to create successful transition programs, with the goal of improving retention and follow-up to care," the authors concluded.