Disclosure of Diagnosis in Children with HIV: A Quantitative and Qualitative Analysis

BACKGROUND: With better access to ART, more children with HIV infection are reaching adulthood and this poses the challenge of counseling them about the disease. The social stigma associated with HIV makes the disclosure process complex. AIM OF THE STUDY: To find the prevalence of disclosure of diagnosis among children with HIV infection and to study factors promoting and inhibiting disclosure OBJECTIVES: 1. To find the prevalence of disclosure of diagnosis among children with HIV infection in the age group 7 – 18 years of age. 2. To assess the factors those facilitate or inhibit disclosure of HIV diagnosis. 3. To assess the impact of disclosure of HIV diagnosis on clinical health outcomes and adherence to therapy. 4. To study the views of parents and caregivers regarding disclosure and non-disclosure of HIV diagnosis. 5. To study the views of healthcare workers on the facilitators and barriers of disclosure of HIV diagnosis. MATERIALS AND METHODS: A semi-structured questionnaire was administered to parents/caregivers of 41 children who were diagnosed to have HIV infection to obtain data regarding caregiver’s perceptions regarding disclosure, ideal age at disclosure and about barriers to disclosure. A questionnaire was also administered to the child to assess his/her knowledge about the disease. Focus group discussions were held with parents and healthcare workers working with children diagnosed to have HIV infection. RESULTS: According to parent/caregivers’ accounts, 46.3% (19) children knew that they were living with HIV. Multivariate analysis using logistic regression showed that only child’s age was a statistically significant predictor of status disclosure (Adjusted OR 5.578, p value 0.036; 95% CI 1.118-27.845). CONCLUSION: Stigma surrounding HIV infection continues to influence the decision to disclose the diagnosis to children and may often delay the process. Disclosure of diagnosis to children with HIV infection did not have a statistically significant impact on adherence to therapy