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Assisted normality: A grounded theory of adolescent’s experiences of living with personal assistance
Karolinska Institutet.ORCID iD: 0000-0001-6333-2852
Karolinska Institutet; Stockholms universitet.
Karolinska Institutet.
2016 (English)In: Disability and Rehabilitation, ISSN 0963-8288, E-ISSN 1464-5165, Vol. 38, no 11, p. 1053-1062Article in journal (Refereed) Published
Abstract [en]

Purpose: The purpose of the study was to explore how adolescents with disabilities experience everyday life with personal assistants.

Method: In this qualitative study, individual interviews were conducted at 35 occasions with 16 Swedish adolescents with disabilities, in the ages 16–21. Data were analyzed using grounded theory methodology.

Results: The adolescents' main concern was to achieve normality, which is about doing rather than being normal. They try to resolve this by assisted normality utilizing personal assistance. Assisted normality can be obtained by the existing relationship, the cooperation between the assistant and the adolescent and the situational placement of the assistant. Normality is obstructed by physical, social and psychological barriers.

Conclusion: This study is from the adolescents’ perspective and has implications for understanding the value of having access to personal assistance in order to achieve assisted normality and enable social interaction in everyday life.

Implications for Rehabilitation

  • Access to personal assistance is important to enable social interaction in everyday life.
  • A good and functional relationship is enabled through the existing relation, co-operation and situational placement of the assistant.
  • If the assistant is not properly sensitized, young people risk turning into objects of care.
  • Access to personal assistants cannot compensate for disabling barriers in the society as for example lack of acceptance.
Place, publisher, year, edition, pages
2016. Vol. 38, no 11, p. 1053-1062
Keywords [en]
Adolescent, Disability, Grounded theory, Interviews, Sweden
National Category
Other Health Sciences
Identifiers
URN: urn:nbn:se:esh:diva-10084DOI: 10.3109/09638288.2015.1091860OAI: oai:DiVA.org:esh-10084DiVA, id: diva2:1736135
Available from: 2023-02-11 Created: 2023-02-11 Last updated: 2023-02-13Bibliographically 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

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