Rose Wilder, Senior Technical Officer, Social and Behavior Change

In South Sudan, children living with HIV (CLHIV) face critical treatment challenges. According to UNAIDS estimates, only 28% of children living with HIV are on antiretroviral therapy, underscoring the urgent need for improved support for families to ensure that children are diagnosed and then enrolled in treatment. 

With funding from PEPFAR and USAID, the Meeting Targets and Maintaining Epidemic Control (EpiC) project applied a human-centered design approach to better understand the barriers to effective HIV treatment among CLHIV. Through engagement with key stakeholders, including caregivers, community leaders, treatment partners, and community-based organizations (CBOs), EpiC sought to uncover the root causes of these challenges and to develop potential social and behavior change approaches that could be used by partner CBOs to address them. 

Diagnosing the Barriers 

To understand the barriers to effective treatment for CLHIV, EpiC started by interviewing caregivers of CLHIV as well as facility- and community-based providers working directly with families affected by HIV. These discussions revealed key insights into the daily realities and obstacles that caregivers, especially mothers, face in managing their own and their children’s HIV status. Many mothers described the burden of concealing their own and their children’s HIV diagnosis, often resorting to discreet handoffs of medication by community-based providers. This secrecy, driven by a fear of stigma and rejection, prevents families from fully utilizing the comprehensive facility- and community-based services available. The interviews also highlighted how HIV-related stigma, which is rooted in the perception that the virus is a death sentence, deters testing and treatment, especially for children. 

An Entry Point for Intervention 

Recognizing the scale of the challenge, EpiC collaborated with facility- and community-based stakeholders, as well as funders, to identify an intervention entry point that would be both effective and feasible. Stakeholders reflected on earlier discussions with caregivers and providers and quickly zeroed in on one recurring theme: pregnant women attending antenatal care (ANC), where HIV testing is mandatory, are often faced with an unexpected HIV-positive result. The initial shock of that result sets the stage for covert management of HIV, with many women unable to disclose their status due to the fear of being blamed for “introducing” HIV into the household. The implications of such blame can be severe, potentially leading to separation, divorce, estrangement from children, and the loss of community respect for both partners. Ultimately, it was determined that creating a supportive environment for pregnant women and their partners when the positive test result is received may be the most appropriate entry point for intervention. 

A Solution for Disclosure and Family Support 

EpiC used an iterative process with caregivers, community leaders, and key CBOs—Young Positive South Sudan (YPSS), Impact Health Organization (IHO), National Women Empowerment and Rehabilitation Organization (NWERO), Christian Agenda for Development (CAD), Initiative for Livelihood Improvement and Development Organization (ILIDO), and National Empowerment of Positive Women United (NEPWU)—to develop a storytelling approach aimed at engaging multigenerational audiences in facilitated community dialogues. Led by trained outreach agents, this approach uses a simple illustrated storybook discussion guide, Together for Each Other: Health is Happiness, that incorporates culturally resonant themes, such as the joy and community respect surrounding pregnancy. The guide’s story and reflection questions frame ANC visits and the potential of an HIV-positive diagnosis within a supportive narrative, emphasizing the role of elders and other trusted community members in supporting couples through the disclosure process. The facilitated storybook is reinforced through a take-home pamphlet that mirrors the storybook for further sharing of key messages among friends and family. By promoting open disclosure, partnership, and teamwork, the guide encourages couples to navigate HIV together, reassuring them that a healthy, fulfilling life—for themselves and their children—is achievable with modern treatment. This message, underscoring the manageability of HIV with proper care, aims to reduce fear and stigma within the community. 

Empowering Families and Transforming Communities 

The storytelling and reflection approach facilitated through the guide empowers families by fostering open dialogue about HIV and engaging pregnant couples and community elders in these conversations. By addressing the stigma and secrecy surrounding HIV, this intervention not only improves treatment access for women and children but also helps to create a more supportive environment for all people affected by HIV in South Sudan. 

Featured image: final image from the storybook discussion guide (illustration by Khangarue Media)