Parents of Adults with Intellectual Disabilities: Quality of Life and Experiences of Caring

Abstract

This study examined a UK sample of parents caring for their adult offspring with intellectual disabilities, and the factors contributing to their quality of life and experiences of caregiving. Structured interviews were conducted with 62 parents of adults with intellectual disabilities. On several indices of quality of life, parents did not seem to be functioning as well as caregiving parents in the US, or as well as adults in the general US population.The offspring's level of challenging behaviour and physical dependency and the parent's satisfaction with informal support were associated with parental quality of life. The salience that parents placed on their post-parental life style was also associated with quality of life, with 'captive' parents faring more poorly than 'captivated' parents. Any correspondence should be directed to Dr Nancy Pistrang, Sub-Department of Clinical Health Psychology, University College London, Gower Street, London WC1E 6BT, UK.