“It’s a secret for the family…it never goes out because they will spread it.”: Navigating secrecy as a tool against HIV stigma among children living with HIV/AIDS and their caregivers in Uganda

Abstract

Adolescents living with HIV/AIDS and their families continue to feel the brunt of the HIV pandemic in low-resource settings such as Uganda. However, little is still known about how adolescents and their families use their internal resources to deal with HIV-associated stigma. Using the Social Positioning theory, we qualitatively explore how adolescents and their caregivers use secrecy as a tool to deal with HIV stigma within their families and communities. We analyzed qualitative data from adolescents (10–14 years) and caregivers participating in an HIV-stigma reduction intervention in the greater Masaka region of Uganda. The study recruited 89 adolescent and their caregivers from 9 comparable healthcare clinics. A total of 17 dyads participated in in-depth interviews that explored their experiences with HIV-related stigma and its perceived impact on their lives and family well-being. We found that adolescents and their caregivers position themselves within collective selective secrecy as a tool to deal with stigma. This is demonstrated under the following themes: navigating complex family relationships, navigating secrecy with neighbors, and dealing with community members. Future public health efforts should assess the effectiveness of this mechanism while developing long-term effective anti-stigma campaigns for HIV-affected communities in Uganda.