Challenges to Children’s Antiretroviral Therapy Adherence: Views and Experiences of Mothers Living with HIV

Antiretroviral therapy (ART) has transformed HIV into a manageable chronic condition; however, substantial gaps in ART adherence persist among children living with HIV (CLHIV), particularly in low- and middle-income countries. This study explored challenges faced by Indonesian mothers living with HIV in supporting and maintaining their children’s ART adherence. A qualitative study was conducted with 23 mothers living with HIV who cared for their CLHIV in Yogyakarta, Indonesia. Participants were recruited using snowball sampling and took part in individual in-depth interviews conducted face-to-face or through WhatsApp video calls. Data were analysed thematically using a qualitative analysis framework. The findings showed three interrelated groups of challenges. Child-related challenges included questioning the need for and benefits of daily ART, treatment fatigue and refusal, comparisons with peers, and competing everyday routines. Mother-related challenges included uncertainty about discussing HIV status and ART with children, fear of stigma and unintended disclosure, guilt related to vertical HIV transmission, illness, psychological distress, emotional exhaustion, and employment demands. Socioeconomic challenges included limited support from spouses and families, bereavement or spousal abandonment, HIV-related secrecy, unemployment, financial insecurity, and transport costs. These circumstances sometimes contributed to delayed medication collection, missed or delayed doses, other treatment disruptions. The findings suggest that children’s ART adherence was shaped by interconnected child, maternal, family, and socioeconomic circumstances rather than by children’s behaviour alone. Family-centred HIV services could consider age-appropriate disclosure support, maternal mental-health care, strengthened social support, flexible treatment delivery, and socioeconomic assistance as potential strategies to support mothers’ capacity to sustain children’s long-term ART adherence.