Family members’ experiences of personal assistance given to a relative with disabilities

Abstract

Personal assistance is a type of home care common to many countries even though entitlement and legislative framework may vary from country to country. At present, there exists no knowledge about the family members' experiences of such assistance; therefore, the aim of this study was to investigate family members' experiences of personal assistance given to a relative of working age with a functional disability. Twenty-five family members who had a relative with a severe neurological disease in Sweden were interviewed about the significance of personal assistance, and the qualitative interviews were subjected to qualitative latent content analysis. The overall findings verify the close connection between the family members' experiences and their perception of the quality of the caring relationship between the personal assistant and the person with disability. The main finding was an appreciation of the personal assistance on the part of the family members. However, in situations where the encounter between the assistant and the relative with disability was perceived negatively, the family members experienced great anxiety. The shortcomings were the inability to maintain a private life with assistance and the limitation of choice because of the shortage of personal assistants. Beyond these general findings, this study found that personal assistance was experienced by the family members in terms of dignity and empowering care. This theme was generated from seven subthemes: Insight into private life, Security through the close relation, Social life through freedom of movement, Influence over the organisation of assistance, Self-determination and understanding, Friendship and mutual respect and Adaption to the dependency on assistance. The findings indicate that responsible officials, work leaders and assistants need constantly to improve the implementation of the law. In such efforts, the experiences of family members described in this study are a source of knowledge.

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