Can you help us with the Choice and Change Study?
The University of York Social Policy and Research Unit have approached the Jennifer Trust about a very interesting study.
They are about to begin a study to find out about the choices being made by disabled young people. They have asked us to promote this study to young people with SMA. As a progressive organisation The Jennifer Trust is always very keen to promote the welfare of people with SMA and we believe that this project will help in highlighting the needs of a particular group who so often lose out as they change from child to adult services. The provision of appropriate services for young people with SMA is particularly relevant to our organisation and we would very much like our young people to participate.
Below is the information about the study, supplied by the University of York. If you are interested have a look at their website, give them call or have a chat about it with Chris Reed at JTSMA.
Are you a young person between 13 and 21 years old with a progressive medical condition or disability?
Have you recently made any choices or decisions about your health care, education or the services or support you receive?
Are you a parent/carer of a young person between 13 and 21 years old with a progressive medical condition or disability?
Have you recently made any choices or decisions about your son/daughter's health care, education or the services or support they receive?
If you have, we would like to hear about:
- the choices you made
- how you made them
- what helped or didn't help
The 'Choice and Change' study is currently being undertaken by a team of researchers at the Social Policy Research Unit at the University of York for the Department of Health. We are looking at how young people and their parents/carers make choices about support and services as their needs change over time.
We would like to hear from young people with progressive medical conditions or disabilities who are aged between 13 and 21 years old and live in England. We would also like to hear from the parents of young people with progressive medical conditions or disabilities who are 13 to 21 years living in England.
The 'Choice and Change' study is taking place over a period of five years. We would like to visit young people and their parents/carers between three and five times over the next three years and talk about some choices or decisions recently made and how these choices or decisions were made. We would like to talk to young people and their parents separately. Parents' interviews would last up to two hours, talks with young people up to an hour. If young people prefer to use alternative methods of communication, such as symbols, voice-boxes, drawing, that's fine, interviews will be tailored to meet each young person's needs and preferences. All interviews will be treated in confidence; no one would be named in any information or reports that we write.
When we have finished talking with families, we will write a report for the Department of Health, we also produce a short summary of the report; this will be available to anyone who has participated in the study.
If you are interested and would like more information about the project, please contact Janet Heaton, Wendy Mitchell or Tricia Sloper on telephone number 01904 321950. If you prefer to e-mail us, our e-mail addresses are Janet: , Wendy: and Tricia: . Alternatively, you can write to us at the Social Policy Research Unit, University of York, Heslington, York, YO10 5DD.
We are happy to answer any questions and just contacting us doesn't commit you in any way to helping us with the study.
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