• Project Dates: From March 2004 to June 2007
• Project Leader: Tom Shakespeare
• Staff: Sue Thompson, Michael Wright (Northern Genetics Service) in association with the Restricted Growth Association
• Sponsors: Community Fund
• Partners: Restricted Growth Association

Background

This three-year project was run in association with the Northern Genetics Service and the Restricted Growth Association. It explored the quality of life for adults with skeletal dysplasia. 

A mix of quantitative and qualitative methods were used 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.

Updates

June 2007

This was the largest and most representative research project ever conducted with restricted growth people, providing information about both social and medical aspects of skeletal dysplasias. Preliminary findings were shared with the Restricted Growth Association, which manages the project, at their October 2006 convention.

Early findings show how public reaction – staring, mockery and even violence – structure the identities of people with restricted growth. There is also important new evidence about the impact of health complications such as sleep apnoea and spinal stenosis.

September 2006

Research Associate Sue Thompson recruited 92 respondents for the quantitative survey, and conducted more than 50 qualitative interviews with restricted growth people from the North of England. It was harder than anticipated to recruit people for the study, which was a finding in itself.

However, 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.

September 2005

The team of Tom Shakespeare, Michael Wright and Sue Thompson have designed a questionnaire for distribution to as many adults with skeletal dysplasias as can be contacted across the North of England, and it is hoped that numbers returning questionnaires will reach 100 by the end of this phase of the project in December 2005.

The next stage will be 50 interviews with a selection of respondents, designed to provide qualitative data on the main areas of project focus, but also to allow for individual perceptions of important issues.

While membership of the Restricted Growth Association provides a ready-made sample group for the project, one of the primary aims of the research has been to include as many respondents outside the RGA as possible, and publicity aimed at informing non-member potential respondents has involved media presentations, contact through health professionals and word-of-mouth.