Challenging the Paradigm: Anthropological Perspectives on HIV as a Chronic Disease

Abstract

Recently HIV has been framed as a ‘manageable’ chronic disease in contexts in which access to effective care is reliable. The chronic disease paradigm emphasizes self-care, biomedical disease management, social normalization, and uncertainty. Data from a longitudinal study of patients (N = 949) in HIV care at two sites in Uganda, collected through semistructured interviews and ethnographic data, permit examination of the salience of this model in a high burden, low resource context struggling to achieve the promise of a manageable HIV epidemic. Our data highlight the complexity of the emerging social reality of long-term survival with HIV. Participants struggle to manage stigma as well as to meet the costs involved in care seeking. In these settings, economic vulnerability leads to daily struggles for food and basic services. Reconceptualizing the chronic disease model to accommodate a ‘social space,’ recognizing this new social reality will better capture the experience of long-term survival with HIV.

Sexuality and childbearing as it is experienced by women living with HIV in Sweden: a lifeworld phenomenological study

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TB and HIV stigma compounded by threatened masculinity: implications for TB health-care seeking in Malawi

“…live without physical markers of illness'. 50 However, studies continue to describe PLHIV on treatment struggling with fears of death, rumours about the side effects of ART, and anxieties related to poverty and unemployment 51 and the threat of transmitting infection. 52 Although they cherish recovery and strive to shed the 'sick identity', PLHIV frequently encounter situations that remind them of their difference and exclude them from society.…”

The stories we tell: Qualitative research interviews, talking technologies and the ‘normalisation’ of life with HIV

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