Project:
Restricted Growth and Quality of Life
Project Leader(s): Tom Shakespeare
Staff: Sue Thompson, Michael Wright (Northern Genetics Service) in association with the Restricted Growth Association
Sponsors: Community Fund
Partners: Restricted Growth Association
Homepage: http://www.community-fund.org.uk/
Background
This three-year project is managed in association with the Northern Genetics Service and the Restricted Growth Association. It is exploring the quality of life for adults with skeletal dysplasia. We will be using a mix of quantitative and qualitative methods to investigate the natural history of restricted growth conditions, and their impact on quality of life, as well as social experiences of people affected by the conditions and the impact of social barriers such as discrimination and prejudice.
Project Update
The data collection for the project is drawing to an end. Sue Thompson has managed to recruit 92 respondents for the quantitative survey, and has conducted more than 50 qualitative interviews with restricted growth people from the North of England. We have found it harder than anticipated to recruit people for the study, which is a finding in itself. Howver, this is the largest and most representative research project ever conducted with restricted growth people. We are particularly pleased that almost half the respondents were not members of the Restricted Growth Association. From preliminary analysis, we already have some important findings about the health and social problems faced by this community. We will be sharing the survey findings with the RGA membership at the October 2006 convention in Bristol. The main dissemination phase will run from February - April 2007, and will be aimed at policy-makers and professionals, as well as the restricted growth community. Please get in touch if you wish to informed about the results of this project.
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Dr Tom Shakespeare
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