Abstract
OBJECTIVES: The present study explored the experiences of caregivers raising a child with perinatal HIV infection through a narrative inquiry approach. It uncovered how caregivers learned about their children's diagnosis, the challenges that they experience in raising their children, and how they cope with the ordeal caused by HIV infection. METHODS: A total of ten participants joined the study - five caregivers participated in the key informant interviews (KIIs), with their respective child diagnosed to have perinatal HIV infection joining the focus group discussion (FGD) (n=5). Semi-structured individual interviews were carried out to examine in-depth narratives from the caregivers. We thoroughly analyzed the verbatim interview transcripts using reflexive thematic analysis (RTA) by the six-phase process outlined by Braun and Clarke (2019). NVivo 12 was utilized in the process of data analysis. The transcribed data were uploaded, coded, and analyzed individually. The software helped the organization and expression of the codes and themes. RESULT: In this study, three major themes and four sub-themes in each theme were generated: a) becoming known: the journey towards testing and treatment, which includes reasons for testing, cause of acquiring HIV, reactions, and treatment, b) passing through challenging times, which cover preparing the child to understand illness, child's awareness and understanding of illness, physical health, and discrimination, and c) receiving essential support which includes an understanding of illness, building hope, needs received, and sources of support. CONCLUSIONS: Caregivers with children living with HIV face challenges such as preparing the illness to be known and understood by their child, managing the child's physical health, and discriminating against others. However, they can live healthy and meaningful lives if they are given comprehensive support from the government, access to quality healthcare and education, and psychosocial interventions. The government and private sectors must make efforts to promote physical, emotional, and mental health care underpinning the well-being of caregivers and children with HIV. The retention of the programs offered by certain organizations (e.g., testing and treatment needs, nutritional and basic needs support, educational supply, and livelihood program for caregivers) and the increase in the number of psychoeducational and support group activities were suggested to significantly help in addressing the concerns of both caregivers and their child with perinatal HIV infection.