Personal assistance from family members as an unwanted situation, an optimal solution or an additional good? The Swedish example

Abstract

The aim of this article was to explore how users experienced and managed personal assistance from family members who are employed as personal assistants. Seventeen users of personal assistance provided by one or several family members, often in combination with external personal assistants, participated. Thematic qualitative interviews were conducted. The participants were between 19 and 58 years old, and were living with various impairments: mobility, sensory and/or learning disabilities. The results showed that personal assistance from family members could both promote and be a barrier to disabled people’s control over their own lives and participation in society. It became evident that the situation could have both advantages and disadvantages for both parties, which puts the focus on the interdependency between the participants and their family assistants. However, the results also points to a potential risk that the welfare state (re)passes its responsibilities back on to disabled people and their families.

Keywords:

• Personal assistance
• family relationships
• user perspective
• qualitative analysis
• Sweden

Acknowledgements

The authors wish to express their gratitude to the participants for sharing their experiences.