New research project on Transition to Adulthood
A new research project on Transition to Adulthood is being led by Professor John Carpenter of Bristol University, and Professor Kate Bushby of Newcastle University. The project is entitled Transition to Adulthood: the experiences and needs of young men with Duchenne muscular dystrophy, and their families.
The Department of Health has agreed to fund this research and the project started in January 2007. The first stage of the research will be to do a postal survey of families with boys aged 15 and over living in three sample regions of England - the South West, the West Midlands and the North East.
The second stage will be to invite a sample of around 50 families for in depth interviews. From these 50 families, a sub group will be selected of young men at major points of transition. This sub group will be followed up during the study period. They and their families will be asked to maintain contact with the researcher and to report significant events as they happen during this crucial period.
The third stage of the project will be to analyse the interviews and identify the key issues for service providers. At this stage, six professionals and three service managers from health, social services and education will also be interviewed. To enable the researchers to develop an interview format for the second stage of the research, the DFSG has been asked to help find two young men aged 15 and over, and their parents, who live outside the sample regions and who would be willing to take part in unstructured interviews.
In addition, the project will be managed by Prof Carpenter, in consultation with Prof Bushby, and supported by a Project Advisory Group which will consist of professionals, academics, carers and ideally at least one young man with DMD. If your family would like to help with the initial interviews; or if you are a carer, or a young man with DMD, and would be interested in being a member of the Project Advisory Group, please write to us at 78 York Street, London W1H 1DP or e-mail us at info@dfsg.org.uk All expenses would be paid.
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