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Representing the absent user: A dilemma for citizens by proxy
Linköping University, The Tema Institute, Department of Communications Studies. Linköping University, Faculty of Arts and Sciences.
2007 (English)In: Mental retardation (Washington, D.C. Print), ISSN 0047-6765Article in journal (Other academic) Submitted
Abstract [en]

Audio recordings of “user-centered” team meetings are used toinvestigate how participants discursively account for decisions and opinionsabout the everyday treatment of five non-participating “users” with severecognitive impairments. The meetings take place in the Swedish rehabilitationsector and the users’ ages vary. Two accounting forms are discerned and relatedto theories of proxy decision-making proposed in medical ethics. “Accountsreflecting user preferences” mirror autonomy values by including references tointerpretations of the user’s preferences. “Accounts reflecting proxy beliefs” lacksimilar references and mirror the values of beneficence and nonmaleficence. It isargued that the participants shall seek to advance the user’s involvementcontinuously and reflect on to what extent his/her expressions of agency shalldetermine the proxy decision-making.

Place, publisher, year, edition, pages
Keyword [en]
Disability, proxy decision-making, democracy, person-centered planning, discourse analysis
National Category
Social Work
URN: urn:nbn:se:liu:diva-52955OAI: diva2:286303
Available from: 2010-01-14 Created: 2010-01-14 Last updated: 2011-04-28
In thesis
1. Funktionshinder, samtal och självbestämmande: En studie av brukarcentrerade möten
Open this publication in new window or tab >>Funktionshinder, samtal och självbestämmande: En studie av brukarcentrerade möten
2007 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[en]
Disability, talk, and self-determination : A study of “user-centred” team meetings
Abstract [sv]

Syftet med avhandlingen är att ur ett medborgarskaps- och kommunikativt perspektiv undersöka och problematisera funktionshindrade ”brukares” självbestämmande i samtal som förs under s.k. brukarcentrerade teammöten organiserade av en vuxen- respektive en barn- och ungdomshabilitering. I mötena deltar en funktionshindrad brukare och/eller anhöriga och professionella från skilda verksamheter. Studien baseras på diskursanalys av 18 observerade och bandinspelade möten hållna av tio olika team. Analyserna visar att brukarna hade ett mer eller mindre begränsat inflytande över samtalens organisering. Inflytandet varierade med organiseringen av samtalen samt med i vilken utsträckning brukarna deltog aktivt genom att identifiera egna problem och framtida mål. Det synliggjorde en spänning mellan ett ”idealt” självbestämmande och brukarnas förmåga/benägenhet att leva upp till de krav som det ”ideala” självbestämmandet ställde och gav upphov till situationer i vilka dilemman mellan självbestämmande och paternalism uppstod. I analyserna av hanterandet av dessa situationer framkom att deltagarna i möten utan deltagande brukare motiverade sina åsikter och beslut rörande behandlingen av brukaren genom att referera till egna övertygelser om vad som är bäst för brukaren respektive till tolkningar av brukarens egna preferenser utifrån hennes/hans agerande i vardagslivet. I möten med deltagande brukare använde övriga deltagare diskursiva strategier som var mer eller mindre paternalistiska då de innebar att de styrde brukaren på ett sätt som det inte var säkert att brukaren själv ville. I avhandlingen diskuteras vilka möjliga strategier som skulle kunna öka brukarnas självbestämmande. Utfallet relateras också till det ”samtalande” och sociala medborgarskap som brukarna i avhandlingen anses utöva samt till andra möjliga innebörder av ett socialt medborgarskapsutövande.

Abstract [en]

From a citizenship and communicative perspective the aim of the dissertation is to examine and problematize the self-determination of disabled “users” during conversations taking place at “user-centred” team meetings. The meetings are organised by two habilitation centres, one for children and young people and one for adults. One disabled user and/or his/her relatives and professionals representing different institutions participate in the meetings. The study is based on discourse analysis of 18 observed and audiotaped team meetings held by ten different teams. The analyses show that the users exerted a more or less restricted influence on the organisation of the conversations. This varied with the organisation of the conversations and to the extent that the users participated actively by identifying their own problems and future goals. Hence, a certain conflict between an “ideal” type of self-determination and the users’ ability/willingness to live up to the demands that this kind of self-determination makes on them was revealed. This conflict gave rise to situations in which dilemmas between selfdetermination and paternalism appeared. By analysing how these situations were handled it was found that the participants in meetings without participating users accounted for their opinions and decisions concerning the treatment of the users by referring either to interpretations of the user’s preferences, which were based on the user’s behaviour in everyday life, or to their own beliefs of what would benefit the user. In meetings with participating users, the other participants handled the situations by steering the discussions in directions the user may not have chosen him-/herself. These discursive strategies were more or less paternalistic. In the dissertation it is discussed what other possible strategies exist that could increase the users’ self-determination. The result is also related to the “spoken” and social citizenship that the users are considered to exercise, as well as to other possible meanings of social citizenship.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2007. 105 + artiklar 1-4 p.
Linköping Studies in Arts and Science, ISSN 0282-9800 ; 381
Disability, Person-centred planning, Self-determination, Paternalism, Citizenship, Democracy, Discourse analysis, Funktionshinder, Brukarcentrering, Självbestämmande, Paternalism, Medborgarskap, Demokrati, Diskursanalys
National Category
Social Work
urn:nbn:se:liu:diva-8601 (URN)978-91-85715-77-0 (ISBN)
Public defence
2007-02-23, Elysion, Hus T, Campus Valla, Linköpings universitet, Linköping, 13:15 (English)
Available from: 2007-03-26 Created: 2007-03-26 Last updated: 2014-09-29Bibliographically approved

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Karlsson, Kristina
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Department of Communications StudiesFaculty of Arts and Sciences
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