“I’m Getting Life from the Treatment”: Perceptions of Life and Death Among Middle-Aged and Older Medication-Adherent Persons Living with HIV in Rural South Africa

ABSTRACT

The widespread availability of health information and treatment for HIV in Southern Africa does not reach all populations. Few programs and materials are developed with middle-aged and older rural individuals living with HIV as the target audience, despite this being a growing population. This vacuum inevitably exacerbates the disjuncture between clinical and experiential knowledge. This study uses in-depth interviews from 2018 with middle-aged and older rural South Africans who self-report medication adherence to ART in order to explore experiences of living with HIV and beliefs about anti-retroviral treatment (ART). Participants revealed a general sense of vulnerability as a major motivation for HIV medication adherence. A majority of the participants believed that death was imminent if they defaulted on ART at any point in time. Although the availability of ART brought hope to many, HIV was still perceived as a death sentence, particularly if ART adherence was imperfect. The study findings suggest a need to examine the psychosocial component of community programs for middle-aged and older people living with HIV. For this growing population that experienced the full course of the epidemic, more research is needed on the burden of psychological and mental health issues emerging from the need for long-term HIV medication adherence.

KEYWORDS:

• Anti-retroviral treatment adherence
• HIV
• mental health
• middle-aged and older persons
• rural
• South Africa

Key points

• Middle-aged and older individuals living with HIV (PLWH) face unique mental health challenges;

• The experiences of middle-aged and older PLWH make them more vulnerable to negative mental health outcomes;

• Fear of death among middle-aged and older PLWH could diminish quality of life;

• There is a need for expanded health information opportunities for middle-aged and older PLWH; and

• HIV intervention programs must be tailored toward the needs of specific age groups.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

The work was supported by the NIA R01 AG049634 - HIV after 40 in rural South Africa: Aging in the Context of an HIV Epidemic [AG049634]; CU Innovative HIV40 Seed Grant (PI Sanyu Mojola) NICHD funded CU Pop Center (P2C HD066613).