Change search
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf
Reluctant participation: The experiences of adolescents with disabilities of meetings with social workers regarding their right to receive personal assistance
Karolinska Institutet.ORCID iD: 0000-0001-6333-2852
Karolinska Institutet.
Karolinska Institutet; Högskolan i Gävle.
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
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.

Abstract [sv]

Syftet med studien var att öka förståelsen av funktionshindrade ungdomars erfarenhet av möten som påverkar deras möjlighet att få personlig assistans i Sverige. Kvalitativ induktiv innehållsanalys användes för att analysera och beskriva deras erfarenheter. Studien visar att ungdomarnas deltagande i möten var motvilligt. Två huvudsakliga förhållningssätt kunde urskiljas – ungdomar som valde att personligen delta och deltagande via ombud. Ungdomarna som deltog i möten försökte anpassa sin självpresentation så att den passade in med LSS-handläggarnas krav genom att visa upp sin sämsta sida, lämna efterfrågad information, söka stöd och göra sin röst hörd. Ungdomarna som valde att delta genom ombud var antingen involverade eller inte involverade i mötena. Att vara involverad innebar medverkan före och/eller efter mötet. Betydelsen av ungdomarnas strategier undersöktes genom en socialkonstruktivistisk lins. Resultaten visar att i samband med mötet är uppvisandet av funktionshindret en förutsättning för att beviljas personlig assistans. I sin nuvarande form reduceras ungdomars deltagande till symboliskt och det väcker frågor kring hur ett barnperspektiv kan implementeras.

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
Keywords [sv]
Funktionshinder, Personlig assistans, Social konstruktivism, Delaktighet, Ungdomar, “The social model of disability”
National Category
Social Work
Identifiers
URN: urn:nbn:se:esh:diva-10083DOI: 10.1080/13691457.2016.1201051OAI: oai:DiVA.org:esh-10083DiVA, id: diva2:1735506
Available from: 2023-02-08 Created: 2023-02-08 Last updated: 2023-02-11Bibliographically approved
In thesis
1. Live life!: Young peoples' experience of living with personal assistance and social workers' experiences of handling LSS assessments from a child perspective
Open this publication in new window or tab >>Live life!: Young peoples' experience of living with personal assistance and social workers' experiences of handling LSS assessments from a child perspective
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The Act Concerning Support and Services to Persons with Certain Functional Impairments, in which the provision of personal assistance (PA) is included, came into force in 1994. It paved the way for strengthened rights for people with disabilities, in which the overall intention was to give disabled people equal opportunities and enable full participation in society.

This thesis explores adolescents’ and social workers’ perspectives on and experiences of personal assistance. The overall aim of this research was to gain empirical knowledge and a deeper understanding of young assistance users’ experiences of living with PA and the social workers’ experience of assessing children’s right to PA and other LSS interventions. In paper I, a grounded theory (GT) analysis showed that the adolescents’ main concern was to achieve normality, which was about doing rather than being normal. The findings underline and discuss the interconnectedness between the different enabling strategies adopted by the adolescents, and to a lesser extent discuss disabling barriers for which PA cannot compensate. In paper II the adolescents describe their experiences of the assessment process which precedes possible access to PA. The content analysis reveals that the adolescents’ participation was determined by the structure of the meetings, in which the assessments tools played a decisive part. The adolescents adapted their behaviour in response. Paper III is based on a phenomenological approach to social workers’ responses to children and young peoples’ ability to participate in meetings and decision making concerning their own support interventions. It reveals difficulties in grasping what participation should be and result in. In paper IV, a GT study, the emerging theory explains how case workers tried to maintain their professional integrity by adopting various strategies.

The synthesis of the four studies has resulted in a clarification of how the individual, organizational and societal levels interact through legislation and policy documents, meetings and norms to create certain processes and interactions between the different stakeholders. However, further research is necessary to explore the long-term effects of the current changes to Swedish LSS-legislation regarding both the professional conduct of the case workers responsible for assessing LSS interventions and the consequences of such decisions for assistance users and their families.

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet, 2018. p. 99
National Category
Social Work
Identifiers
urn:nbn:se:esh:diva-10102 (URN)978-91-7831-062-3 (ISBN)
Public defence
2018-05-24, Magnus Huss Aula, Stockholms sjukhem, Mariebergsgatan 22, Stockholm, 13:00 (Swedish)
Opponent
Supervisors
Available from: 2023-02-14 Created: 2023-02-11 Last updated: 2023-02-14Bibliographically approved

Open Access in DiVA

No full text in DiVA

Other links

Publisher's full text

Authority records

Hultman, Lill

Search in DiVA

By author/editor
Hultman, Lill
In the same journal
European Journal of Social Work
Social Work

Search outside of DiVA

GoogleGoogle Scholar

doi
urn-nbn

Altmetric score

doi
urn-nbn
Total: 188 hits
CiteExportLink to record
Permanent link

Direct link
Cite
Citation style
  • apa
  • ieee
  • modern-language-association-8th-edition
  • vancouver
  • Other style
More styles
Language
  • de-DE
  • en-GB
  • en-US
  • fi-FI
  • nn-NO
  • nn-NB
  • sv-SE
  • Other locale
More languages
Output format
  • html
  • text
  • asciidoc
  • rtf