Barriers and facilitators to HIV care linkage and retention among older adults diagnosed with HIV in Malaysia: a qualitative study

INTRODUCTION: Older adults newly diagnosed with HIV experience poorer prognosis and higher mortality compared to those diagnosed at younger ages. We explored the barriers and facilitators in HIV care linkage and retention among newly diagnosed older persons living with HIV (OPLWH) in Malaysia.

METHODS: We conducted in-depth interviews with OPLWH and focus group discussions with healthcare providers (HCPs) from five specialties (primary care medicine, psychological medicine, gynecology, geriatrics and infectious disease) at a tertiary hospital between September 2021 to April 2022. All sessions were audio-recorded, transcribed verbatim and analysed thematically.

RESULTS: We recruited 16 OPLWH and 7 HCPs. Thirteen OPLWH were male. Eight of them self-identified as men who have sex with men (MSM) and the rest were heterosexual. Diagnosis of HIV was between the ages of 50-61 years old. Barriers and facilitators could be categorized into three levels: individual, interpersonal and institutional. Individual barriers included misinformation about HIV treatment, unable to afford HIV-related services, and belief that life was futile. Interpersonal barriers were HIV-related stigma, poor social and family support, and social prejudice towards MSM. Lastly, institutional barriers were the need for frequent hospital visits, high cost for HIV-related services, a lack of guidance following diagnosis and poor communication with HCPs. Facilitators included doctor or friend support and positive institutional reputation.

CONCLUSIONS: Multiple challenges hindered optimal care for OPLWH after HIV diagnosis. Issues like high costs, belief that treatment is futile, and a lack of family support need to be addressed as part of long-term support services for OPLWH.