"I cry alone because I'm so exhausted": Family caregivers' perspectives on mHealth support in paediatric HIV care in Indonesia.

OBJECTIVES

Family caregivers of children living with HIV (CLHIV) in Indonesia navigate complex emotional and caregiving responsibilities amid stigma, isolation and limited support. This study aimed to explore the lived experiences of family caregivers in caring for children with HIV and to understand their perspectives on the potential use of mobile health (mHealth) applications to support paediatric HIV care in Indonesia.

METHODS

A qualitative descriptive study was conducted using semi-structured interviews with fifteen purposively selected family caregivers at a national infectious disease referral hospital in Jakarta. Data were collected between June and August 2024, and analysed using conventional content analysis to inductively identify key themes.

RESULTS

Three overarching themes were identified: (1) The Silent Burden of Caregiving, encompassing stigma, fear of disclosure, emotional fatigue and uncertainty about the child's future, (2) Supportive and Enabling Conditions, reflecting the role of social and spiritual support alongside interest in mHealth applications and their desired features, and (3) Barriers to Digital Technology Use, highlighting concerns over privacy, confidentiality and limited digital literacy.

CONCLUSIONS

Caregiving for a child with HIV is emotionally taxing and often undertaken in silence. mHealth applications may offer meaningful support when designed to be user-informed, culturally relevant and integrated with broader psychosocial services. Contextualized digital solutions have the potential to enhance HIV care outcomes in low-resource settings.