Research Project Assessing Quality of Life and Quality of Care for People with Disabilities

 

Efforts to improve the quality of care and quality of life of people with intellectual and physical disabilities are at different stages of development, across Europe and beyond. In particular, the service provision needed to promote the move from segregated living to more integrated living within the community is developing at different rates in different countries and regions. There is a need for better systems of care which can be applied in a wide variety of cultural and social environments, and which include appropriate opportunities for user feedback and participation in care policies.

Efforts to improve the quality of care and quality of life of people with intellectual and physical disabilities are at different stages of development, across Europe and beyond. In particular, the service provision needed to promote the move from segregated living to more integrated living within the community is developing at different rates in different countries and regions. There is a need for better systems of care which can be applied in a wide variety of cultural and social environments, and which include appropriate opportunities for user feedback and participation in care policies.

 
The overall aims of the project are to investigate:

  • The quality of care for adults with disabilities linked to recent developments in social policy and typical examples of service practice in European and Non-European centres.

  • The subjective experience of individuals with disabilities, and the extent to which typical care and support options promote integrated living, social inclusion and service user participation.

  • The role of attitudes to disability and persons with disabilties (and/or attitudes to personal disabilities), in relation to the delivery of care and service user's experience of social justice.

  • The impact of different service models and care practices on the quality of life of individuals with disabilities.

 
Three cross cultural measures are being developed within the project and subsequently tested within eighteen participating and contributing centres: a measure of quality of care and support, with related versions for adults with physical disabilities (QOCS-D) and adults with intellectual disabilities (QOCS-ID); a measure of the quality of life of disabled persons based on the existing World Health Organisation's quality of life measures, the WHOQOL, but adapted and extended for use with disabled personss and their carers, with three related versions, for adults with physical disabilities (WHOQOL-BREF & Disabilities Module), adults with intellectual disabilities (WHOQOL-BREF-ID & Disabilities Module), and for proxy resondents (WHOQOL BREF-ID and Disabilities Module (Proxy)); and a measure of attitudes to disability and to persons with disabilities (the Attitudes to Disabilities Scale) with related versions for adults with physical disabilities and intellectual disabilities, developed to cover both general attitudes to disabilities and people with disabilities and attitudes to personal disability.

Deliverables and achievements:

  1. International and National Literature Reviews
  2. National Taxonomies of Care
  3. Involvement of people with disabilities, their families, carers and professionals in identifying the relevent facets for comprehensive assessments of quality of care, quality of life and attitudes in this population, drawing on their views and life experiences, as well as the conceptual and empirical literature.
  4. Liaison between each partner and local and national NGOs working in the field of disability
  5. Development of professional materials, such as manuals, videos and training packages, based on the project's findings.
  6. Development of the pilot, and subsequently revised and refined Field Trial, versions of the measures .
  7. The project's findings will be used to provide policy guidelines and a framework for social justice in relation to service provision forpeople with disabilities.
  8. A better understanding of the impact of community care policies on quality of life and the promotion of integrated living.
  9. Provision of evaluation tools and benchmarks useful at national policy level for assessment and improvement of policy.

Further dissemination:

  • A review of the Literature and several publications will be made available
  • Three core measures of Quality of Life, Quality of Care and Attitudes to disabilities designed to address the specific needs of people with disabilities, their families and carers, will be made available.
  • Manuals provising administration guidance, information about scoring and background psychometric properties to accompany these three measures.
  • Self-help and self-assessment packages for distribution via Internet and other media.
  • Dissemination of research findings through international and national scientific journals and books.
  • Dissemination through presentations at key international conferences and meetings (IASSID, Cape Town, August 2008, OSOQOL, Montevideo, October 2008).
  • Contribution to the WHO World Report on Disability (to be published 2009).
  • Final WHO hosted Dissemination conference to be held in Brussels, Autumn 2008 for dissemination to policy makers, service providers and service users.

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Source: Inclusion Europe E-Include