Experiences of Caring for Adolescents Living with HIV (ALHIV): A Qualitative Interview with Caregivers

Abstract

Purpose: This study aims at exploring experiences of people caring for adolescents living with HIV, also known as caregivers. By 2021, 150,000 adolescents were living with HIV and 32,000 adolescents were dying of AIDS related causes. HIV/AIDS remains one of the most serious public health problems, especially among the adolescents. This has placed a heavy burden on many caregivers, yet they are essential in caring for ALHIV. However, focus of all interventions has excluded caregivers of ALHIV. Thus, this is the reason why this study is being conducted to find out caregivers’ experience in caring for ALHIV. Participants and Methods: A phenomenological study was carried out. Purposive sampling was used to select a total of 15 caregivers to participate in the study. These participants were subjected to in-depth semi-structured interviews. Their responses were recorded, transcribed and translated for thematic analysis. Results: While analyzing the results, six themes emerged. They include: diagnosis and reaction to diagnosis, experiences on adolescent’s HIV serostatus disclosure, stigma and discrimination, care disengagement, and lastly, challenges during care and coping strategies. Caregivers experienced feelings of fear, Guilt, suicidal thoughts after diagnosis. Stigma and discrimination of adolescents living with HIV which was common at school and from the neighbors and the adolescent stage were some of the challenges experienced by the caregivers and it makes it hard to retain ALHIV in care. Conclusion: Families are the main source of caregiving to the adolescents living with HIV (ALHIV). The study’s findings indicate that caregivers in the families experience challenges related to family needs, and psychological challenges resulting from the adolescence stage. So, families should not be left to shoulder the burden of caring for ALHIV. As a way forward, social network and financial support should also be strengthened for most caregivers as a coping strategy.