Surviving Overwhelming Challenges: Family Caregivers’ Lived Experience of Caring for a Child Diagnosed with HIV and Enrolled in Antiretroviral Treatment in Ethiopia

Abstract

Family caregivers play a critical role in caring for children living with HIV, however, there is little knowledge about their experiences. The aim of this study was to illuminate the family caregivers’ lived experiences of caring for a child when he or she has been diagnosed with HIV and enrolled to antiretroviral treatment. Qualitative interviews with 21 family caregivers of 21 children diagnosed with HIV were analyzed using an inductive design with a hermeneutic phenomenological approach. The caregivers' experience were articulated in 5 subthemes under the main theme of “Surviving overwhelming challenges”: “Committed care-giving,” “Breaking the family life,” “Caring burdens,” “Confronting conflicts,” and “Living with worry.” Despite the difficult situation the family caregivers experienced with extensive worry, caring burdens, and disrupted family and social networks, they were committed caregivers. They were empowered by their belief in God but also by their strong belief in the child’s treatment and support from healthcare workers. The healthcare system needs to consider possible ways to support the family caregivers during child’s HIV diagnosis and treatment initiation as part of a continuum of care.