Caregivers' perspectives on disclosure, care, and treatment among pediatric HIV/AIDS patients in South India: A qualitative study.

Abstract

Background:Rollout of antiretroviral therapy (ART) has helped to achieve the increased life span among pediatric HIV patients. The psychosocial aspects of parents or caregivers can affect the treatment adherence in children and the disease outcome.Aims and Objectives:This study aims at understanding the perspectives on disclosure of HIV status, stigma, antiretroviral treatment, and compliance among caregivers of children attending ART clinic in South India and to explore the barriers to treatment-seeking behavior.Materials and Methods:This facility-based qualitative study was carried out among caregivers of pediatric HIV patients <15 years of age. In-depth interview was conducted on caregivers after informed consent in the absence of the child, focusing on stigma, disclosure of HIV status to children, adherence, and coping strategies followed by the parents. The complete interviews were transcribed in English, and content analysis was done to identify the emergence of codes. Interview was conducted among mothers of affected child. The disease status of the children was known only to the parents and not to the children themselves (excepting one) or siblings. Parents intended to keep it confidential for the affected children as long as possible. Nevertheless, to maintain adherence and to prevent disclosure of HIV status, mothers traveled to this ART center from very far places, medical records were hidden, and tablets were removed from the strips and said to be medicines for energy and protection.Conclusion:Mothers of HIV-positive children faced many difficulties to prevent the disclosure of the diagnosis from the affected children and others, which is not very conducive to adherence to the ART regimen. Effective disclosure strategies to manage this emotionally vulnerable group are an urgent need.