While HIV/AIDS-related stigma (H/A stigma) shapes every aspect of how families manage their children's HIV disease, there are few reliable and validated instruments to measure H/A stigma for HIV-infected children and their families, especially in resource-limited settings where the vast majority of HIV-infected children live. The long-term goal of our research team is to provide evidence to improve the chronic disease management of HIV-infected children. The purpose of this study is to develop and test a reliable, valid instrument to measure H/A stigma as perceived, enacted, and internalized by Kenyan families with HIV-infected children. The primary endpoint will be construct validity for a set of culturally adapted, developmentally appropriate H/A stigma measurement items to assess family H/A stigma. This work will be conducted within a long-standing US-Kenya partnership, the Academic Model Providing Access to Healthcare (AMPATH), which currently cares for over 70,000 adult and pediatric HIV-infected patients at 25 clinics and 40 satellite clinics in western Kenya. We will utilize the excellent infrastructure of this academic partnership as well as the platform of an ongoing cluster- randomized controlled trial to provide a systematic validation of measurement items for assessing H/A stigma among HIV-infected children and their families in sub-Saharan Africa. We will develop and test a reliable, valid instrument to measure family H/A stigma by pursuing these specific aims:
Aim 1 : Identify and modify H/A stigma questionnaire items for maximum reliability and content validity to measure perceived, enacted and internalized H/A stigma among Kenyan families with HIV-infected children;
Aim 2 : Assess the validity of the measures of perceived, enacted and internalized H/A stigma compared to independent construct measures including adherence to therapy and children's physical, psychological and social outcomes;
Aim 3 : Examine whether disclosure of a child's HIV status to the child reduces perceived, enacted, or internalized stigma for families with disclosed children compared to families with non-disclosed children. Phase One of the study will identify, assess and refine questionnaire items to measure H/A stigma among Kenyan families through a literature review of existing data, patient input through focus groups and cognitive interviewing for item modification. Phase Two of the study will test the reliability and validity of the H/A stigma measurement items among 240 HIV-infected children and their caregivers who are being followed within an ongoing cluster- randomized, controlled trial evaluating an intervention to support disclosure of HIV status to children. Outcome measures being collected for the ongoing trial, including medication adherence, and physical, psychological and social outcomes, will be utilized as a diverse set of constructs for comparison and validation with H/A stigma measurement items. We hypothesize that H/A stigma measurement items based on culture-specific qualitative work will yield reliable and valid measures of H/A stigma for families with HIV-infected children.
The contribution of this study is expected to be a culturally appropriate, reliable and valid instrument to measure HIV/AIDS-related stigma as perceived and experienced by Kenyan families with HIV-infected children. The proposed research is significant because without reliable and valid instruments to measure stigma, we cannot accurately assess the impact of stigma on pediatric HIV-related clinical, emotional and social outcomes or evaluate stigma-reduction strategies. The long-term goal of this research is to provide evidence to improve the chronic disease management of HIV-infected children in resource-limited settings.
