Final Report Summary - DIS-QOL (Quality of care and quality of life for people with intellectual and physical disabilities)
The DIS-QPL project was designed to investigate the quality of care and quality of life of people with disabilities in relation to developments in social policy and typical examples of service practice, and focused on the subjective experience of individuals with disabilities within these frameworks.
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.
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.
