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Reluctant participation -€“ the experiences of adolescents with disabilities of meetings with social workers regarding their right to receive personal assistance [Motvilligt deltagande–erfarenheter hos ungdomar med funktionshinder av möten med LSS-handläggare gällande deras rätt till personlig assistans]
Karolinska Institutet, Division of Social Work, Department of Neurobiology, Care Sciences and Society (NVS).
Karolinska Institutet, Childhood Cancer Research Unit, Department of Women’s and Children’s Health (KBH).
University of Gävle, Faculty of Health and Occupational Studies, Department of Social Work and Psychology, Social work. Karolinska Institutet, Division of Social Work, Department of Neurobiology, Care Sciences and Society (NVS).ORCID iD: 0000-0001-8448-7917
2017 (English)In: European Journal of Social Work, ISSN 1369-1457, E-ISSN 1468-2664, Vol. 20, no 4, p. 509-521Article in journal (Refereed) Published
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Text
Abstract [en]

The aim of this study was to improve understanding of the experiences of adolescents with disabilities concerning meetings that affect their possibility to receive personal assistance in Sweden. Qualitative inductive content analysis was used to describe their experiences. Overall adolescents were found to be reluctant to participate in meetings. Two main approaches could be discerned – taking part and taking part by proxy. The adolescents who took part in meetings tried to adapt their self-presentation to fit with the social workers’ requirements by presenting their worst self, giving requested information, using support and raising their voices. The adolescents who choose to participate by proxy were either being involved or not being involved. Being involved implied involvement before and/or after the meeting. The meaning of participants’ strategies was examined through a social constructivist lens. The results indicate that ‘performing disability’ during the meetings is a prerequisite for obtaining personal assistance. In its current form adolescents’ participation is reduced to tokenism and this raises questions about how to implement a child perspective.

Place, publisher, year, edition, pages
2017. Vol. 20, no 4, p. 509-521
Keywords [en]
Disability, personal assistance, social constructivism, participation, adolescents, social model of disability, Funktionshinder, Personlig assistans, Social konstruktivism, Delaktighet, Ungdomar, “The social model of disability”
National Category
Social Work
Identifiers
URN: urn:nbn:se:hig:diva-22132DOI: 10.1080/13691457.2016.1201051ISI: 000406101200006Scopus ID: 2-s2.0-84976407353OAI: oai:DiVA.org:hig-22132DiVA, id: diva2:947482
Note

Funding agency:

Stiftelsen Sunnerdahls Handikappfond Grant no 18/12

Riksförbundet för Rörelsehindrade Barn och Ungdomar (RBU) Grant no 2012-04-30

Norrbacka-Eugeniastiftelsen Grant no 2510/11

Norrbacka-Eugeniastiftelsen Grant no 531/14

Available from: 2016-07-08 Created: 2016-07-08 Last updated: 2020-12-16Bibliographically approved

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Forinder, Ulla

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