Careful assistance? Personal assistance within the family as hybridization of modern welfare policy and traditional family care

Abstract

The aim of this article is to examine how different ideological perspectives on Swedish disability policy, are reflected in the experiences of disabled people and their families personal assistants. Personal assistance provided within the family can be seen as a hybridization between publicly regulated and paid work performed in the private family sphere, and thus conflicting norms and practices may coexist. In Sweden, family members of the assistant user can be employed as paid personal assistants. Many users combine personal assistance from family members with non-family assistance. Approximately 20–25% of the employed personal assistants are relatives of the assistance users. The empirical data consists of qualitative interviews with seventeen adult users and twenty-three family members employed as PAs with different types of family ties; parent-child relationships, sibling relationships and partner relationships. The findings show that family assistance could entail advantages such as personalised services, to combine instrumental and emotional assistance as well as achieving a power-balance between the parties. But there were also disadvantages, such as unwanted or enforced dependency, with a risk for both parties to be ‘locked up’ in the family. In an overall analysis, we distinguished three broad approaches towards family assistance, family as a substitute, family as a supplement and family first.