From dying with dignity to living with rules: AIDS treatment and 'holistic care' in Catholic organisations in Uganda

Louise Mubanda Rasmussen

Research output: Book/ReportPh.D. thesisResearch

Abstract

This dissertation studies three Catholic organisations in Uganda involved in providing ‘treatment, care and support’ to people living with HIV/AIDS. Based on ten months’ fieldwork in different types of Catholic AIDS projects in Kampala and Arua dioceses, the dissertation provides a comparative perspective on divergent ways that bio-medical treatment, spiritual care and social support to people living with HIV/AIDS are combined and negotiated in the context of the antiretroviral (ARV) treatment ‘scale-up’ that has taken place in many African countries since 2004.

Combining Foucault-inspired perspectives with ethnographic studies, the dissertation explores the intersections between the Catholic organisations’ religious ideals and practices, ‘global AIDS treatment’ and the self-government the organisations attempt to promote among people living with HIV/AIDS. The analysis focuses in particular on practices of counselling and home visiting as key sites of negotiation and debate about how to govern the conduct of people with HIV/AIDS.

The dissertation makes its main argument in two parts. First, I argue that the dominant forms of government in the three Catholic organisations centres around disciplining and educating people living with HIV/AIDS to follow ‘the rules’ of ARV treatment. This form of government includes working on the responsibility of people with HIV/AIDS and their families to independently address any social or economic barriers to following these rules. With this dominant form of government, the Catholic framing of ‘holistic HIV/AIDS care’ as a matter of combining medical healing with spiritual and material assistance is side tracked, and pastoral care approaches are reconfigured as psychological techniques of self-transformation.

I then analyse how people living with HIV/AIDS negotiate following ‘the rules’ with trying to realise the potentials of ARV treatment in their own lives. I argue that the effects of the Catholic organisations’ practices of ‘treatment, care and support’ include producing new life-prolonging potentials, but also new uncertainties and inequalities.

By studying Catholic organisations involved in the ARV treatment ‘scale-up’, this dissertation contributes with a unique perspective on the scale-up. The dissertation highlights how the massive allocation of resources for ARV treatment in Sub-Saharan Africa provides only a partial potential to prolong life, and how treatment providers at the same time produce new social inequalities, by committing ARV patients to follow a meticulous self-government regime. For Catholic organisations involved in the ARV treatment scale-up, we can trace how promoting individual responsible self-government is replacing ethical questions of how to ensure human dignity in times of adversity with spiritual and material assistance.
Original languageEnglish
Place of PublicationDet Teologiske Fakultet, Københavns Universitet
Number of pages317
ISBN (Print)978-87-91838-35-4
Publication statusPublished - 16 May 2011
Externally publishedYes

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