Research That Matters (January 17 - 20, 2008)

Background and Purpose: Perinatally HIV-infected adolescents are a fast emerging risk group for substantive mental health and behavioral difficulties that jeopardize their own health and that of others. With the prospect of a longer lifespan, these youth must negotiate normative developmental issues, such as puberty, peer relations and sexuality while simultaneously coping with a stigmatizing disease. HIV prevention research suggests that family functioning and stability are important determinants of risk and resilience for youth. The quality of family relationships, parental monitoring, and parent-child communication are predictive of child psychological adjustments, sexual risk behavior, substance use, and susceptibility to peer pressure. However, few, if any, programs exist that focus on prevention of sexual and drug risk-taking behavior of HIV+ youth. This paper will present the process of adapting and piloting an evidence-based HIV prevention program for youth and their families (The CHAMP Family Program), for use with HIV+ youth and families both domestically and in South Africa.

Methods: A community based, collaborative team consisting of pediatric HIV primary care program staff and perinatally infected HIV+ youth and their caregivers from two medical care clinics utilized participatory action research methods to refine and adapt the CHAMP family intervention for use with this population. Caregiver/adolescent consultancy groups at each of the two participating sites met for eight two-hour sessions over a period of 2-3 months to: 1) review and revise existing CHAMP curriculum to assess appropriateness of content, format, etc.; 2) develop new intervention content based upon perceived needs; and 3) identify potential challenges to consumer participation. Simultaneously, research staff met with clinic staff to also gather input related to intervention content, and feasibility of integrating a test of CHAMP+ into clinics' service delivery system in the United States and South Africa.

Results: Findings from the participatory action research resulted in changes to curriculum content, (i.e. adding and reordering sessions, reallocating time, and substantial development of youth portion of curriculum) resulting in: (1) high participation rate of clinic consumers and staff; (2) significant consumer involvement in regards to program content; (3) strong sense of program ownership from consumers; and (4) increased sense of parental connection to children.

Conclusions and Implications: The collaboration among researchers, clinic staff, and consumers proved effective in adapting and further revising an evidence-based HIV intervention for a new population of HIV+ youth. As large numbers of these youth age into adolescence, both in the US and abroad, mental health and medication adherence difficulties must be addressed through contextually appropriate interventions acceptable to consumers and providers that can be integrated into standard of care for this population.