Living with HIV at the Point of Antiretroviral Therapy Initiation: A Qualitative Study of Health-related Quality of Life and Readiness for Treatment at a Tertiary Hospital in South Africa

Abstract

Background: In the era of expanded antiretroviral therapy (ART), global HIV targets increasingly emphasise health-related quality of life (HRQoL) as a “fourth 95”, yet there is limited in-depth, patient-centred evidence on how adults in resource-constrained settings experience HRQoL and readiness to start ART. Aims: This study explored how people living with HIV in a South African public sector clinic perceive their quality of life across key HRQoL domains and how these perceptions shape readiness to initiate or adhere to ART. Methods: A descriptive qualitative study using in-depth, semi-structured interviews was conducted with 11 adults living with HIV who were newly diagnosed and initiated on ART. Interviews explored physical health, emotional and psychological responses, independence and daily functioning, social relationships and stigma, environmental and structural conditions, and spirituality and desired healthcare support. Audio recordings were transcribed verbatim and analysed using reflexive thematic analysis. Results: Participants’ HRQoL perceptions directly influenced ART readiness and anticipated adherence, with experiences of stigma, mental health burden, transport barriers and economic insecurity sometimes undermining confidence in starting and sustaining treatment. Findings generated from participants' lived experiences highlighted multidimensional HRQoL across physical, psychological, independence, social, environmental and spiritual domains. Participants described highly heterogeneous baseline quality of life, ranging from “brilliant” and unchanged daily functioning to profound illness, fatigue and recurrent hospitalisation. Emotional responses included shock, sadness, fear of job loss and suicidal feelings, but also acceptance and positive reframing, often supported by peer groups and faith. Social experiences ranged from supportive partners, families and community groups to severe rejection, isolation and homelessness. Environmental and structural barriers, including transport, clinic distance, unsafe housing and unemployment, were central concerns that patients linked directly to self-care, nutrition and treatment continuity. Spirituality and religious practice were prominent coping resources, though views on integrating faith into formal care were mixed. Across domains, stigma, economic insecurity and health system constraints emerged as cross-cutting influences on HRQoL and ART readiness. Participants’ HRQoL perceptions directly influenced ART readiness and anticipated adherence, with experiences of stigma, mental health burden, transport barriers and economic insecurity sometimes undermining confidence in starting and sustaining treatment. Conclusion: Improving HRQoL and supporting ART initiation in this setting will require integrated approaches that address stigma, social and economic vulnerability, mental health and spiritual needs alongside biomedical management, positioning quality of life as a core outcome of HIV care.