INFORMAL CAREGIVERS OF HIV PEOPLE IN MALAYSIA: UNMET SOCIO-ECONOMIC AND RECOMMENDATION TO IMPROVEMENT

Abstract

The consequences attached to the Informal caregivers (ICGs) of People Living with HIV (PLHIV) are numerous due to social sensitivity and the contagiousness of HIV. Therefore, this study aims to understand their perception of unmet needs and elucidate recommendations to improve their appropriate socio-economic resources. The qualitative study with four focus group discussions was conducted among IGGs caring for PLHIV in Kuala Lumpur, Kedah, Selangor, and Perak. A purposive sampling method was used to recruit n=23 female (n=14) and (n=9) male participants. The findings show that ICGs experienced complex perceptions in accessing social services and managing HIV-related crises. The low-income ICGs significantly expect the multiple support systems for their care recipients and children to enhance the well-being of care recipients and families instead of concerning their own self-care and personal development support. Their needs and expectations could be categorised into two primary forms: first, socioeconomic services such as financial assistance, employment flexibility, and stigma reduction intervention. Second, non-medical services such as emotional support and mental health services, caregiving training, medical transport services, and informational support. By drawing from their expectation of social support, holistic micro- and macro-level community-based strategies and supportive policy formulation are essential to enhance ICGs and the quality-of-care recipients.