Final Report Summary - DIS-QOL (Quality of care and quality of life for people with intellectual and physical disabilities)
The project aims were to:
- investigate the extent to which typical care and support options promote integrated living, social inclusion and service user participation;
- investigate the role of attitudes to disability and persons with disabilities in relation to the delivery of care and service users' experience of social justice;
- investigate the impact of different service models and care practices on the quality of life of individuals with disabilities.
The specific objectives of the project were the following:
- develop three cross cultural measures for use with people with intellectual and physical disabilities: a measure of quality of care (the quality of care and support or QOCS); a measure of the quality of life of disabled persons based on the existing World Health Organization's (WHO's) quality of life measure, the WHOQOL-BREF, but adapted and extended for use with disabled persons and their carers (WHOQOL-DIS); a measure of attitudes to disability and to persons with disabilities (the attitudes to disabilities scale or ADS);
- carry out a large cross-cultural study of the quality of care and quality of life of people with disabilities and attitudes to disabilities and to persons with disabilities, within European and non-European participating centres;
- draw conclusions and inform social policy and practice in relation to intellectual and physical disability in the European Union and more globally.
Three cross-cultural measures were developed within the project and subsequently tested within the 18 participating and contributing centres, each measure having related versions for physical disability (D) and intellectual disability (ID):
- a measure of quality of care and support (QOCS-D and QOCS-ID);
- a measure of the quality of life of disabled persons based on the existing WHO's quality of life measure, the WHOQOL-BREF, but adapted and extended for use with people with disabilities (WHOQOL-DIS);
- a measure of attitudes to disability and to persons with disabilities (the attitudes to disabilities scale) with parallel versions relating to general attitudes to disabilities (ADS-D (G) and ADS-ID (G)) and to attitudes to personal disabilities (ADS-D (P) and ADS-ID (P))
In addition, proxy versions of two of the measures were developed for use in connection with people with severe intellectual disabilities lacking the capacity to respond directly by self report, providing a means by which family members or care providers may respond indirectly as proxies:
- a proxy measure of quality of care and support (QOCS-ID (Proxy));
- a proxy measure of quality of life (WHOQOL-BREF and WHOQOL-DIS (Proxy)).
Cross-cultural comparisons of quality of care, quality of life and attitudes to disability were conducted with reference to both geographical location and culture; and the impact of relevant socio-demographic information such as gender, age, and health and disability status were examined, as well.