HIV Status Disclosure Among Perinatally Infected Adolescents Living With HIV (ALHIV): Perspectives of Primary Caregivers, Healthcare Providers, and ALHIV in Mumbai, India

Background Advances in pediatric HIV care have increased survival beyond adolescence, but disclosure of HIV status remains challenging. Many adolescents are unaware of their status and face psychosocial difficulties related to lifelong treatment adherence. We conducted a qualitative study to explore the perspectives of all three stakeholders (children and adolescents living with HIV (C/ALHIV), primary caregivers, and healthcare providers (HCPs)) and understand the challenges and nuances surrounding the process of disclosing HIV status to children and adolescents with HIV. We also aimed to identify the enablers and barriers to disclosure. Methods A qualitative study was conducted involving 24 interviews and eight focus group discussions (FGDs) with C/ALHIV (HIV status was disclosed), caregivers of C/ALHIV (HIV status was not disclosed to children and adolescents), and HCPs from seven antiretroviral therapy (ART) centres in Mumbai, including a pediatric ART centre. The FGDs and interviews were conducted in Hindi, Marathi, or English (according to the language preference). These recorded interviews were transcribed and translated into English for analysis. Thematic network analysis was used to identify key themes related to the disclosure process. Results Disclosure was perceived as complex and emotionally challenging. Key themes included apprehensions of caregivers and HCPs about disclosure-related emotional distress, C/ALHIV’s desire for accurate information, dilemmas regarding timing and responsibility for disclosure, experiences of incomplete disclosure, adverse psychological effects such as depression and ART non-adherence, and a lack of structured follow-up counselling after disclosure. C/ALHIV reported ongoing anxiety related to social stigma and accidental disclosure risks. Enablers in the disclosure process included individualized counselling, while barriers involved insufficient provider knowledge, inadequate counselling protocols, and poor documentation. Conclusion This study highlights the multifaceted challenges of HIV status disclosure to C/ALHIV in India. Findings support developing comprehensive, culturally sensitive guidelines emphasizing collaborative disclosure approaches, HCP training, and structured follow-up care to enhance comprehensive care and management of adolescents living with HIV.