Its a Secret for the Family...It Never Goes out Because They Will Spread It. Navigating Secrecy As a Tool Against HIV Stigma and Associated Adversity Among Children Living with HIV and Their Caregivers in Uganda

Background and Purpose: Agency, defined as the capability of individuals to make choices and to act on those choices in ways that make a difference in their lives, is critical to children’s growth and development. Child agency has been associated with positive influence on child adjustment, health and well-being, and positive school outcomes. However, few studies have focused on the agency of children living with HIV, specifically, in sub-Saharan Africa (SSA). Indeed, most studies have had a strong inclination to the negative impact of HIV on child development and wellbeing. Moreover, the ways through which children advance their agency to deal with HIV stigma—a major barrier to all aspects of the HIV care continuum, and associated adversity, are very few in the public health field, especially in poor resource settings. Yet, understanding child agency can advance interventions meant for child development and parenting in contexts where there are hardly any effective and sustainable child-focused interventions. This study explores how children living with HIV in a low resource setting in Uganda, use their agency as a tool to navigate HIV stigma and associated adversity.

Methods: Utilizing stratified purposive sampling, we conducted semi-structured in-depth interviews with 17 children (10-14 years) and their caregivers, recruited as part of a pilot randomized clinical trial to address HIV stigma and improve the mental health functioning of children living with HIV and their caregivers. Participants were recruited from 9 health clinics. Inclusion criteria for children included: 1) living with HIV and aware of their status; 2) between 10-14 years; 3) enrolled on antiretroviral therapy; and 4) living within a family, including the extended family. In-depth interviews focused on children’s experiences with HIV stigma within the family and community settings, impact of stigma on children’ wellbeing and family functioning, and coping strategies. Interviews were conducted in Luganda, the local language widely spoken in the study region. All interviews were audiotaped, transcribed and translated verbatim. Thematic analysis was used to analyze the data.

Results: Participant narratives indicate that the family develops secrecy and children are empowered to use family secrecy to slow down the impact of stigma on themselves and on their families. Specifically, children were involved in negotiating secrecy about their HIV status, places where their drugs are kept, less involvement with non-close family members on health matters and in obtaining HIV medication, and using discrete telephone contact with health care providers. Taken together, although stigma still prevails, agency enable children deal with stigma at family, community, and health facility level. Indeed, agency seemed to be stronger where there is family support.

Conclusion: There is little emphasis on investing in processes that develop agency among child focused interventions. Yet the adversity related to HIV stigma and its consequences is still glaring in HIV impacted communities. Tapping into agency as one of the domains that support child development, especially those impacted of HIV, may be critical.