Use this URL to cite or link to this record in EThOS: http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.550328
Title: The quality of life of adults with intellectual disabilities
Author: Green, Ann M.
Awarding Body: University of Edinburgh
Current Institution: University of Edinburgh
Date of Award: 2005
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Abstract:
The replacement of institutional care for people with intellectual disabilities with community care and accommodation has been established social policy in many countries for a number of years. Successive studies have reported improvements on various dimensions of quality of life, immediately following community resettlement and over longer periods; however, the extent to which new service models promote lifestyles and life experiences comparable with those of the general population is less well documented. The thesis comprises four related studies which explore aspects of the quality of life of adults with intellectual disabilities in hospital and community settings in the context of recent developments in Scottish social policy; compare the life experiences of intellectually disabled adults in NHS and social care with that of adult members of the general public; and describe the adaptation and development of an international measure of quality of life (the WHOQOL) for the intellectual disability population. In pilot study one, the themes relevant for comprehensive assessment of the quality of life of adults with intellectual disabilities were generated by focus groups of clients in health and social care, staff working in this specialty, and relatives of individuals with intellectual disabilities. The findings suggested that the facets of quality of life measured by the WHOQOL were relevant to adults with intellectual disabilities also, but required to be supplemented by additional themes specific to this client group. These findings informed pilot study two in which the WHOQOL-BREF (the abbreviated version of the WHOQOL-100) was customised and developed for an intellectual disability population with simplified item wording (retaining semantic equivalence), the introduction of additional items (reflecting the supplementary quality of life facets), and pictorial augmentation of item response scales; and a small field trial of the adapted WHOQOL-ID was carried out, as part of which an initial analysis of the psychometric properties of the new scale was conducted. In a subsidiary study, a survey of 51 community based social care and accommodation projects for adults with intellectual disabilities was carried out; structured interviews were conducted with care staff about the suitability and effectiveness of this accommodation; and a pilot housing fit index reflecting the match between the care needs of resident clients and the characteristics of project accommodation was developed. The findings of pilot study two underpinned refinement of the WHOQOL-ID for use in the main study, which employed a three level between-groups design to compare the quality of life of 204 community clients living in the social care projects described in the subsidiary study, 213 learning disability hospital residents (matched with the community group for gender, age, and dependency) immediately prior to resettlement as part of a hospital closure programme, and 208 members of the general public (matched with both groups for gender and age, and with the community group for locality). The data collected were used to carry out a full evaluation of the psychometric properties of the final instrument also. Significant differences found between the three groups were discussed with reference to implications for social policy and service developments in intellectual disabilities; and suggestions for future research were outlined.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID: uk.bl.ethos.550328  DOI: Not available
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