In the pilot study described in this article, a family-based HIV prevention program, CHAMP, provided important intervention design elements for the design and pilot of an intervention for HIV+ preadolescents and their families, entitled CHAMP+. To adapt CHAMP into the CHAMP+ program, issues specific to this population, including HIV as a stigmatizing disease, disclosure of the illness to the child and those within and outside the family, adherence to medical treatment, multiple losses experienced by families and fears about the future were incorporated into the curriculum.
In designing the CHAMP+ pilot project, consumers were involved in roles of critical importance through meetings to design the program. As a result of these meetings, the content of the CHAMP Family Program was changed and additional sessions were added, although the format of program delivery was maintained. The preliminary evaluation of the program revealed that the collaboration between HIV-infected youth, their adult caregivers, pediatric HIV primary care providers, and HIV prevention scientists yielded a program that reflected the special needs of families affected by pediatric HIV. Study findings, based on participants’ perception of change as detailed in the post-intervention exit interviews and process notes, showed enhancement of the caregiver/child relationship, increased communication, increased participant self-efficacy, and social network expansion with others affected by HIV.
However, the process evaluation also revealed several areas where the CHAMP+ Family Program needed to be further tailored to meet the needs of families affected by pediatric HIV. More specifically, issues related to HIV stigma, disclosure, and secrecy proved to be of even great importance than anticipated for the study sample. Thus, the overall ‘lessons learned’ from the process evaluation of the CHAMP+ Family Program was that addressing issues of secrecy, HIV disclosure, and stigma in the early sessions of an intervention are critical to the development of an acceptable preventative intervention for this population. Failure to address these issues prior to the delivery of health promotion messages will undermine any preventative intervention efforts.
The public health implications of the transition of HIV/AIDS from an acute, lethal disease to a sub-acute chronic disease are enormous (Brown, Lourie, & Pao, 2000). Perinatally HIV-infected preadolescents are quickly emerging as a group at risk of engaging in behaviours that jeopardise their own health, and that of others. Programs and services are urgently needed that help perinatally HIV-infected children in making the transition from childhood into adolescence and that engage them in HIV prevention efforts.
A process evaluation of the CHAMP+ Family Program pilot study provided valuable insights related to a possible program structure and process. These preliminary findings will be especially beneficial to programmers seeking to plan, implement, and evaluate HIV preventative interventions with HIV-infected populations of youth and their families. These results suggest that families affected by pediatric HIV accepted and identified with a family-based model, implemented in a clinical setting.
However, this was an exploratory, pilot study implemented with only 10 participants (five caregiver/child dyads). Results must be interpreted with caution, as the sample is not large enough to generalize to the larger pediatric HIV population. Clearly, the CHAMP+ Family Program needs to be implemented with a larger sample to determine if the preliminary results are replicable.
Given current estimates and the millions more children projected to be born with perinatally acquired-HIV internationally, particularly in resource poor countries, progressive and innovative approaches to preventative interventions for HIV+ youth are needed. A family-based model such as CHAMP+ that seeks to intervene with perintally HIV-infected youth during the crucial time of adolescence may not only enhance the youths’ quality of life, but may also dramatically reduce the spread of HIV/AIDS.