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.

Keywords:

• antiretroviral treatment
• chronic disease
• HIV/AIDS
• identity work
• Uganda

Notes

1. 1.During this time period, the JCRC clinic changed locations, so some patients had to travel further to get there. In Mbarara, two things resulted in longer distances at the 24-month interview. First, persons lost to follow up between 6, 12, and 24 months had reported distances below the median and secondly, 33 persons reported that they had moved and now lived further from the clinic. Together these factors result in a greater median distance to the clinic for the MUST sample.

2. 2.‘Expert clients’ are HIV-infected persons who disclose their status publically and then work with HIV outreach at various venues. They are used widely in Uganda to encourage testing and treatment.

Additional information

Notes on contributors

Janet W. McGrath

Janet W. Mcgrath, PhD is associate professor of Anthropology at Case Western Reserve University, Cleveland, and Co-Director of the Center for Social Science Research on AIDS (CeSSRA), Makerere University, Kampala, Uganda. Her research interests are in HIV, women’s health, and the sociocultural context of HIV/AIDS.

Margaret S. Winchester

Margaret S. Winchester, PhD is a postdoctoral scholar in Health and Environment in the Department of Geography at the Pennsylvania State University. She is a medical anthropologist with research interests and experience in global health, HIV, gender violence, and household economies in Uganda and South Africa.

David Kaawa-Mafigiri

David Kaawa-Mafigiri, PhD, MPH is a lecturer in the Department of Social Work and Social Administration, School of Social Sciences, Makerere University, Kampala, Uganda and Adjunct Assistant Professor in the Department of Anthropology, Case Western Reserve University, Cleveland. He has conducted research on HIV, AIDS, and tuberculosis (TB) since 1995, including vaccine preparedness, women’s access to treatment, social networks, and social support for TB treatment with several multinational, multisite collaborations.

Eddy Walakira

Eddy Walakira, PhD is senior lecturer and acting chair of the Department of Social Work and Social Administration at Makerere University, Kampala, Uganda and is the co-director of the Center for the Study of the African Child. His areas of research include child protection, child labor, social protection, and HIV and AIDS.

Florence Namutiibwa

Florence Namutiibwa is the research and program assistant at CeSSRA, Makerere University, Kampala, Uganda. She has experience in HIV/AIDS, including study data collection, employing ethnography, and mixed methods.

Judith Birungi

Judith Birungi is the administrative assistant, CeSSRA, Makerere University, Kampala, Uganda. She has worked with different government departments focusing on participatory planning and budgeting, community mobilization and sensitization, research and data collection, and child protection.

George Ssendegye

George Ssendegye is a research assistant for CeSSRA and works at the Mbarara site, Uganda.

Amina Nalwoga

Amina Nalwoga is a research assistant for CeSSRA at Makerere University, Kampala, Uganda.

Emily Kyarikunda

Emily Kyarikunda is a research assistant for CeSSRA at Makerere University, Kampala, Uganda.

Sheila Kisakye

Sheila Irene Kisakye is a research assistant for CeSSRA, Makerere University, Kampala, Uganda.

Nicolas Ayebazibwe

Nicolas Ayebazibwe is a research assistant for CeSSRA, working at the Mbarara site, Uganda.

Charles B. Rwabukwali

Charles B. Rwabukwali, PhD, is a professor in the Department of Sociology and Anthropology, and co-director of CeSSRA, Makerere University, Kampala, Uganda. His research interests are in health care utilization, the sociocultural context of HIV/AIDS, and patterns of fertility regulation.