Life strategies parents of people with profound intellectual and multiple disabilities living in Poland regarding their children’s future

Abstract

The aim of this article is to trace an aspect of the lives of the families of people with intellectual disabilities emerging from the consideration of the survival of the children past the death of their parents (or the situation in which the parents, due to an advanced age, will not be able to provide adequate care for their children with disabilities). Personal experiences of parents of people with profound intellectual and multiple disabilities served as the research material for the present study. The analysis of the research material relied on the principles of grounded theory methodology. The research undertaken revealed that making arrangements for the future is of particular concern to parents and caregivers of people with disabilities. Their perceptions of the future show deep discrepancies. The findings helped identify the attitudes and corresponding life strategies adopted by the parents of children with profound intellectual and multiple disabilities.

Points of interest

• This article looks in detail at the problems and concerns of ageing parents caring for individuals with profound intellectual and multiple disabilities

• Research shows that ageing parents who care for adult children with profound intellectual and multiple disabilities displayed a variety of positions and strategies regarding their children’s future

• This study helps us understand the needs of families raising children with disabilities as well as for improving the quality of life of these families

• The research is relevant to government officials as it enables them to use the findings to implement appropriate actions to meet the needs of people with disabilities and their families

• The findings suggest that it is necessary to provide a more extensive and adequate range of resources to support parents of persons with disabilities, as based on systemic solutions provided by state institutions and non-governmental organizations.

Keywords:

• Family
• parents
• adult children
• profound intellectual and multiple disabilities
• ageing
• dilemmas about the future

Acknowledgements

The author extends his thanks to all respondents for sharing their personal stories and dr Katarzyna Kobos for her invaluable help in the translation and linguistic correction of the text.

Disclosure statement

The author reports no declaration of interest.