The elements of paediatric HIV status disclosure: A qualitative study from Karnataka, India

      Background: With improved access to combination anti-retroviral therapy (cART), children with HIV are growing into adolescence and adulthood. If the children are deprived of the knowledge regarding their disease, there would be significant challenges in coping with the disease. Hence this study was conducted to assess the various elements of the disclosure of paediatric HIV status.
      Methods & Materials: Focus group discussions were conducted in June 2015 among the caregivers of HIV positive children visiting an Anti-Retroviral Therapy (ART) centre in a Southern coastal city of Karnataka, India. Snowballing method was adopted for recruitment of the caregivers. The groups consisted of 8 members. Anonymity was maintained by giving codes for the participants. The discussions were conducted in Kannada, the official language of Karnataka. The discussions were voice recorded, transcripts prepared in English and analysed. Written informed consent was taken from each participant and Ethical committee clearance was obtained for the study.
      Results: All the caregivers opined that the children have to be informed about their HIV status mainly for their knowledge and better adherence to self-care and medications. The caregivers felt that they themselves have to tell the children at the comforts of their homes, when the child was around 7-10 years of age. A majority of the participants felt that the children need to be told as a process over time and not as a discrete one-time event. They would also appreciate the help of the counsellors, especially in answering the children's questions. Although improved adherence was seen in the older children, there were no benefits among the younger children. The negative aspects of disclosure commonly seen were negative emotional reactions like sadness, worry or anger which subsided over time. The children did not face any stigma or discrimination following disclosure.
      Conclusion: As there are more benefits than harm from disclosing the HIV status to the child, disclosure it should occur as a slow evolving process over time starting around 7-9 years and done preferably by the caregivers, assisted by the counsellors. Development of culturally appropriate interventions to facilitate disclosure of HIV status to infected adolescents is key to improve retention, adherence and other outcomes.