Family as failure? The role of informal help-givers to disabled people in Sweden

Abstract

Based on a survey mapping all unpaid help and care work in the county of Stockholm, this article focuses on the informal help and care carried out for long-term ill and/or disabled people aged 64 or younger. The findings indicate that these forms of support are common and that the informal help-givers work many hours every month. Yet the impact of this work is quite invisible in texts on disability policy and there is a void of research addressing this issue. This article argues that, in spite of welfare state arrangements and reforms, families play a crucial role in providing resources, notably help and care for disabled family members. Their invisibility is interpreted as an expression of the fact that the care concept has become politically incorrect. In the light of modern disability policies, with its ideals of autonomy and empowerment, help and care provided by families to adults aged 64 or younger stand out as a dilemma and a contradiction. Making help and care provided by families invisible can be interpreted as one way of solving this contradiction.

Keywords:

• family
• family care
• informal care
• informal help-givers
• long-term illness
• disability

Notes

1. An exception was found to be the Journal of Intellectual Disabilities in which 224 out of 412 articles on family caregiving concerned care for grown up intellectually disabled people and their caregiving parents and siblings.

2. Members of four of the largest disability organizations in Sweden were included in the survey: De handikappades riksförbund [DHR], Hörselskadades riksförbund [HRF], Sveriges dövas riksförbund [SDR] and Synskadades riksförbund [SRF]. An additional sample was drawn of non-members with the same disabilities.

3. Results from the survey indicated that the share of the population who were caregivers to someone in their own household was only 5%, which means that the majority of caregivers help person(s) they do not cohabit with.