Adolescents’ Experiences and Their Suggestions for HIV Serostatus Disclosure in Zambia: A Mixed-Methods Study

Sumiyo Okawa, Sylvia Mwanza-Kabaghe, Mwiya Mwiya, Kimiyo Kikuchi, Masamine Jimba, Chipepo Kankasa, Naoko Ishikawa

HIV serostatus disclosure is an immense challenge for adolescents living with HIV, their caregivers, and health workers. In Zambia, however, little guidance is available from the adolescents' point of view on the HIV disclosure process. This study aimed to examine the setting of HIV serostatus disclosure for adolescents, its impacts on them, and their suggestions on the best practice of HIV disclosure. We conducted a mixed-methods study at the University Teaching Hospital in Zambia from April to July 2014. We recruited 200 adolescents living with HIV, aged 15-19 years. We collected data using a structured questionnaire including two open-ended questions. We excluded two adolescents due to withdrawal during the survey, and eight from the data set due to out-of-eligibility criteria in age. Eventually, we included 190 in the analysis. We performed descriptive analysis to calculate the distributions of basic characteristics of the adolescents, their experience and preference on HIV serostatus disclosure, its emotional and behavioral impacts, and health education topics they had ever learned at hospital. We performed thematic analysis with open-ended data to explain first impressions upon disclosure in detail and to determine perceived advantages of HIV serostatus disclosure. The majority of adolescents recommended the age of 12 as appropriate for adolescents to learn about their HIV serostatus and preferred disclosure by both parents. Out of 190 adolescents, 73.2% had negative or mixed feelings about HIV serostatus disclosure, while 86.2% reported that disclosure was beneficial. Thematic analyses showed that the adolescents reacted emotionally due to an unexpected disclosure and a belief of imminent death from HIV. However, they improved adherence to treatment (84.7%), limited self-disclosure of their HIV serostatus to others (81.1%), and felt more comfortable in talking about HIV with their caregivers (54.2%). Thematic analysis identified perceived benefits of disclosure as follows: better understanding of their sickness and treatment, and improved self-care and treatment adherence. Lower percentage of the adolescents have learned about psychosocial well-being, compared to facts about HIV and treatment. Despite initial emotional distress experienced after the disclosure, knowing one's own HIV serostatus was found to be a crucial turning point for adolescents to improve motivation for self-care. HIV serostatus disclosure to adolescents requires follow-up support involving parents/primary caregivers, health workers, and peers.