Living with HIV from birth into young adulthood: Key issues facing a pioneering generation of HIV-positive youth in Baltimore, Maryland

Background: In the United States, access to antiretroviral therapy has turned perinatal HIV infection from a terminal childhood illness into a manageable chronic condition. The first surviving cohort of perinatally infected children is now reaching late adolescence. There are many unknowns about how best to help these young people make successful transitions into healthy adulthood. Methods: This study uses life history interviews with a small cohort of perinatally HIV-infected youths (18-24 years old) to investigate factors influencing the transition to healthy adulthood, including relationships with pediatric medical providers, social support networks, medication adherence, and personal coping strategies. A series of three ethnographic interviews with 15-20 young people attending a pediatric HIV clinic in Baltimore, Maryland will be completed by summer 2008. Results: Preliminary findings suggest the importance of the following themes in the transition of these young people to healthy adulthood: the positive and negative effects of mother-child dynamics in relationships between perinatally infected youths and their medical providers; social and developmental factors that may influence youths' abilities to undertake immediate protective behaviors that provide only long-term future benefit; and the importance of creating personal narratives about what HIV and antiretroviral medications are doing inside one's own body. Conclusions: Ethnographic interview methods have provided a useful means of understanding the key issues facing youths perinatally infected with HIV as they approach adulthood. The findings from this study may be useful in designing effective support services for this vulnerable population as they enter a critical period of transition and growth.