From dying with dignity to living with rules

AIDS treatment and 'holistic care' in Catholic organisations in Uganda

Louise Mubanda Rasmussen

Publikation: Bog/antologi/afhandling/rapportPh.d.-afhandlingForskning

Resumé

Denne ph.d. afhandling omhandler tre katolske organisationer i Uganda, der er involveret i behandlings- og støtte projekter til folk der lever med HIV/AIDS. Afhandlingen er baseret på ti måneders feltarbejde i forskellige typer katolske AIDS projekter i henholdsvis Kampala og Arua stift. Afhandlingen tilvejebringer en komparativ analyse af forskellige måder hvorpå biomedicinsk behandling, sjæle omsorg og social støtte til AIDS patienter kombineres og forhandles i forskellige katolske projekter i forbindelse med udbredelsen af anti-retroviral (ARV) medicin i Uganda.

Ved at kombinere et Foucault-inspireret teoretisk perspektiv med etnografiske studier, undersøger afhandlingen forbindelseslinjerne mellem de katolske organisationers’ religiøse idealer og praksisser, det globale styringskompleks omkring AIDS medicin og de selvstyrings-praksisser organisationerne forsøger at fremme blandt AIDS patienter. Analysen fokuserer hovedsageligt på AIDS rådgivning og hjemmebesøg som centrale arenaer for forhandlinger og diskussioner omkring hvordan AIDS patienters’ selv-styring skal styres.

Afhandlingen argumenterer i den første del, at den dominerende form for styring i de tre organisationer går ud på at disciplinere og uddanne AIDS patienterne til at følge ’reglerne’ for ARV medicin og ’Positive Living’. Denne form for styring involverer også en ansvarliggørelse af AIDS patienterne til selvstændigt at adressere sociale og økonomiske barrierer for at følge ’reglerne’. I den forbindelse bliver katolske idealer om en helhedsorienteret indsats, der forbinder medicinsk, spirituel og materiel ’helbredelse’ kørt ud på et sidespor, og sjælesorgs-praksisser bliver omdefineret som psykologiske selv-forandrings-teknikker.

Afhandlingen analyserer dernæst hvordan AIDS patienter forsøger at udfolde ARV medicinens potentiale i deres hverdagsliv. Disse analyser illustrerer, hvordan de katolske organisationer, gennem de ovennævnte styringspraksisser, er med til at producere nye livsforlængende potentialer, mens også nye usikkerheder og uligheder.

Ved at studere katolske organisationer, der er involveret i udbredelsen af ARV medicin, bidrager afhandlingen med et unikt perspektiv på dilemmaerne og udfordringerne ved ARV medicin i Afrika. Afhandlingen sætter fokus på hvordan de enorme donor midler, der er tilsigtet ARV medicinens udbredelse i Afrika kun delvist bidrager til at skabe livsforlængende potentialer, og hvordan ARV programmer samtidig er med til at skabe nye sociale uligheder ved at kræve at AIDS patienter følger en omstændig form for selv-styring. I den forbindelse, kan vi for katolske AIDS projekter aflæse, hvordan spørgsmål om individuel selv-forvaltning afløser etiske problemstillinger om hvordan menneskelig værdighed sikres igennem spirituel og materiel støtte.
OriginalsprogEngelsk
Udgivelses stedDet Teologiske Fakultet, Københavns Universitet
Antal sider317
ISBN (Trykt)978-87-91838-35-4
StatusUdgivet - 16 maj 2011
Udgivet eksterntJa

Citer dette

Mubanda Rasmussen, L. (2011). From dying with dignity to living with rules: AIDS treatment and 'holistic care' in Catholic organisations in Uganda. Det Teologiske Fakultet, Københavns Universitet.
Mubanda Rasmussen, Louise. / From dying with dignity to living with rules : AIDS treatment and 'holistic care' in Catholic organisations in Uganda. Det Teologiske Fakultet, Københavns Universitet, 2011. 317 s.
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title = "From dying with dignity to living with rules: AIDS treatment and 'holistic care' in Catholic organisations in Uganda",
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.",
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Mubanda Rasmussen, L 2011, From dying with dignity to living with rules: AIDS treatment and 'holistic care' in Catholic organisations in Uganda. Det Teologiske Fakultet, Københavns Universitet.

From dying with dignity to living with rules : AIDS treatment and 'holistic care' in Catholic organisations in Uganda. / Mubanda Rasmussen, Louise.

Det Teologiske Fakultet, Københavns Universitet, 2011. 317 s.

Publikation: Bog/antologi/afhandling/rapportPh.d.-afhandlingForskning

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N2 - 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.

AB - 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.

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Mubanda Rasmussen L. From dying with dignity to living with rules: AIDS treatment and 'holistic care' in Catholic organisations in Uganda. Det Teologiske Fakultet, Københavns Universitet, 2011. 317 s.