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Funktionshinder, samtal och självbestämmande: En studie av brukarcentrerade möten
Linköping University, The Tema Institute, Department of Communications Studies. Linköping University, Faculty of Arts and Sciences.
2007 (Swedish)Doctoral thesis, comprehensive summary (Other academic)Alternative title
Disability, talk, and self-determination : A study of “user-centred” team meetings (English)
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
Keyword [en]
Disability, Person-centred planning, Self-determination, Paternalism, Citizenship, Democracy, Discourse analysis
Keyword [sv]
Funktionshinder, Brukarcentrering, Självbestämmande, Paternalism, Medborgarskap, Demokrati, Diskursanalys
National Category
Social Work
URN: urn:nbn:se:liu:diva-8601ISBN: 978-91-85715-77-0OAI: diva2:23349
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
List of papers
1. Democracy in talk: Dominance in ”usercentered” team meetings
Open this publication in new window or tab >>Democracy in talk: Dominance in ”usercentered” team meetings
2007 (English)In: Scandinavian Journal of Disability Research, ISSN 1501-7419 (print), 1745-3011 (online), Vol. 9, no 2, 91-111 p.Article in journal (Refereed) Published
Abstract [en]

The aim is to examine the discursive organization of “user-centred” team meetings in the Swedish rehabilitation sector. The “users” are aged between 4 and 30 and have been ascribed different kinds of impairments. The teams consist of one user and/or her/his relatives and different professionals. The analysis is primarily based on transcriptions of 18 audiotaped team meetings held by 10 different teams and focuses on two dimensions of dominance in interaction: the amount of talk and topic control. The findings point to professional dominance, but parents also have a great influence on the topic control. The degree of participation and the control of topics of the users who participate in the meetings vary, but most of the users become involved primarily by responding to the questions and suggestions of professionals and parents. In order to increase the users' control of the interactions the participants need to continuously discuss the organization of the conversations. The findings are related to complicating aspects of the conversations, including institutionalization, representation difficulties, varying communicative abilities, and expectations of expertise and adult liabilities.

National Category
Communication Studies
urn:nbn:se:liu:diva-14368 (URN)10.1080/15017410701264418 (DOI)
Available from: 2007-03-26 Created: 2007-03-26 Last updated: 2014-09-29
2. Democracy and dilemmas of self-determination
Open this publication in new window or tab >>Democracy and dilemmas of self-determination
2006 (English)In: Disability & Society, ISSN 0968-7599 (print), 1360-0508 (online), Vol. 21, no 2, 193-207 p.Article in journal (Refereed) Published
Abstract [en]

Results from analyses of interactions in 'user-centred' meetings within the Swedish rehabilitation sector are reported. Transcripts of team meetings are used to discern situations in which dilemmas of self-determination versus paternalism may possibly need to be treated when the 'user' with impairment is to exercise his/her social citizenship. The analyses illustrate how the liberal ideal of self-determination makes certain demands on the 'user'. These demands are categorised as 'physical presence', 'interpretable voice', 'purposeful voice', 'sincere voice' and 'realisable voice'. It is argued that dilemmas of self-determination are impossible to avoid completely. To deal with the complexity of implementing self-determination, it is important to try to adjust the preparations and the organisation of the meetings, increase user control of services provided, combine individualised support with collective and political action, and allow expressions of different models of democracy. The possibility of appreciating interdependence and justifying paternalistic actions also needs to be acknowledged.

National Category
Social Sciences
urn:nbn:se:liu:diva-14369 (URN)10.1080/09687590500498267 (DOI)
Available from: 2007-03-26 Created: 2007-03-26
3. Handling dilemmas of self-determination in ‘user-centred’ rehabilitation
Open this publication in new window or tab >>Handling dilemmas of self-determination in ‘user-centred’ rehabilitation
2007 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 29, no 3, 245-253 p.Article in journal (Refereed) Published
Abstract [en]

Purpose: To describe discursive strategies used by different professionals and parents to handle dilemmas of self-determination versus paternalism during six 'user-centred' team meetings in the Swedish rehabilitation sector. The dilemmas arise when the users' responses do not fully meet the demands of the liberal ideal of self-determination.

Method: Three cases are used to illustrate three discursive strategies that have been found by means of discourse analysis of transcriptions of the audio-recorded meetings. Four teams consisting of one user each participate in the study. The users have been ascribed physical and/or cognitive disabilities and their ages vary between 14 and 30.

Results: The dilemmas were never made explicit. Parents and professionals performed a kind of paternalistic steering termed 'challenging the user's response', 'substituting for the user', or 'dropping the user's response'.

Conclusions: The least paternalistic steering includes making the dilemma explicit and offering the user the opportunity of sharing the responsibility for the handling of the situation. However, due to the complexity of the interactions no strategy can be found to either completely prevent the occurrence of dilemmatic situations, or definitely maintain the user's self-determination during dilemmatic situations. Paternalism may occasionally be a just way of enhancing future autonomy.

Person-centred planning, rehabilitation, disability, self-determination, dilemmas, democracy, discourse analysis
National Category
Communication Studies
urn:nbn:se:liu:diva-14370 (URN)10.1080/09638280600756414 (DOI)
Available from: 2007-03-26 Created: 2007-03-26 Last updated: 2009-05-04
4. Representing the absent user: A dilemma for citizens by proxy
Open this publication in new window or tab >>Representing the absent user: A dilemma for citizens by proxy
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.

Disability, proxy decision-making, democracy, person-centered planning, discourse analysis
National Category
Social Work
urn:nbn:se:liu:diva-52955 (URN)
Available from: 2010-01-14 Created: 2010-01-14 Last updated: 2011-04-28

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