Transition to adulthood: the experiences and needs of young men with (DMD), and their families

Lead applicants: Prof. John Carpenter, Centre for Health and Social Care, School for Policy Studies, University of Bristol and Prof. Kate Bushby, Muscle Centre, University of Newcastle upon Tyne
Start date: Late 2006. End date end 2008.
Researcher David Abbott, email: [email protected]

Background

This research proposal was worked out with members of the Duchenne Family Support Group, a user-controlled organisation. It has the support of the Muscular Dystrophy Campaign (MDC), the major national charity working in this area.
Duchenne Muscular Dystrophy (DMD) is an inherited neuromuscular disease which affects boys. The hallmark of the disease is that muscles get weaker as you grow older. About a third of young people with DMD also have learning disabilities. Many, but not all, of the people affected have grown up expecting that they will die before they become adults. However, with specialist treatment, including major spinal surgery and use of a breathing mask at night, boys with DMD can now expect to live around 25 years. Over the next few years, young men should be able to live even longer.
All of this means that young people with DMD should be looking forward to living independently as adults with appropriate support from health and social services. But, according to members of the Duchenne Family Support Group (DFSG) these young people are not helped to fulfil their potential at school, nor given opportunities to live full lives as they become adults.  Professionals involved in their care have almost always assumed that they will not reach adulthood and, as a result, there has been little, if any, planning to meet their needs or the needs of their families. These needs are complex: they require medical, health care, psychological, educational and social support. Whether these needs can be met provides a good ‘test case’ of government policy.
Two National Service Frameworks - for Long Term Neurological Conditions and for Children and Young People - outline the kinds of services which should be provided to help young men like these and their families. It is recognised in these frameworks that the transition to adulthood is a key stage in a person’s development. Clearly this is especially so in the case of DMD.

Aims

This study aims to find out:
1) How the health and well-being of young men living with DMD, and that of their carers, can be maximised, particularly at the transition to adulthood
2) How the NSF for LTNC can help with the development of health, social care, education and employment services for this group of service users.
3) How practically based theories can help us to understand the relationships between people with long term conditions, their carers and services
4) What lessons from this research can apply to other young people with LTNCs and their carers as they become adults.

What we will do and how we will do it

We will send a detailed questionnaire about people’s experiences to all 160 (approx) families affected by DMD in the North East, South west and West Midlands Regions in England. We will follow them up a year later to see if they think that services have improved as a result of the implementation of the NSFs. We will select a sample of around 50 families to represent a full range, including black and minority families, poor families, those living in rural and urban areas. We will then carry out in-depth interviews with interviews with young people/men, their siblings and carers (about 100 in all). Finally, we will interview health, education and social work professionals from a range of agencies within the different regions.
The research will be supported by a Project Advisory Group, including members of the DFSG and MDC and clinicians providing specialist services.

Results of the research

As well as the usual reports and articles, we will provide short plain English summary reports and materials for our partners, web-sites and newsletter. We will work closely with the DFSG to ensure awareness of the findings amongst its members and other relevant organisations and individuals.

 

Progress reports

Winter 2007 Update

We held our first young people’s reference group at the Cheshire Neuro-Muscular Centre on July 19th2007. This helped us with good suggestions for talking about sensitive topics in interviews with young men and also how to put people at ease at the start of interviews. Pilot interviews with 3 families which included siblings (a total of 11 interviewees) helped us fine tune the topic guide and provided interesting findings in their own right.

The study was given Medical Research Ethical Committee (MREC) approval in August 2007.  We had to obtain R&D approval in each of the 3 regions where the research is being carried out, which delayed the postal survey. Interestingly, none of the 3 regions followed national guidance on the issuing of Honorary Contracts which meant that the main researcher had to apply for these, submit new Criminal Records Bureau (CRB) applications and complete pre-employment occupational health questionnaires. This was only resolved in the first week of October, after which surveys were sent out, followed by a reminder at the end of November.

Qualitative Interviews with families in 3 areas (plus a pilot) are now underway. 24 families have already taken part and most of these have included a young person with DMD, some siblings and one or two parents /carers.

The research team continue to network at relevant conferences and seminars including:
1) Duchenne Family Support Group AGM, London, April 28
2) Nordic Network Disability Research Conference, Gothenburg, May 10-12
3) Transition Information Network National Reference Group Meeting, London, September 6
4) ‘Live & Let Die’, conference of the Child Bereavement Charity, Birmingham, September 27

New links have been made with Action Duchenne and their independent researcher who is doing work on access to clinical trials. Also, researchers at the rehabilitation department of the Erasmus University Medical Centre, Rotterdam, are conducting a study called, "3D: Duchenne from the third decade. Functioning, quality of life and unmet needs of adults with Duchenne Muscular Dystrophy and their informal care-givers". This is part of an on-going programme of work around transition and a one day study visit to the Centre will take place in January 2008 to find out more about each others work.

Summer 2008 update

The study is due to finish in December 2008. At this point the findings are still being analysed and so the following comments are provisional. It appears that quite a few young men had finished college and were at home not doing very much. Some of them minded about this more than others. Many respondents said they felt bored and sometimes isolated.  We did not meet any young men who had finished school or college and found employment – although some had tried. Not everybody was interested in getting a job – some people said it would be difficult because of their health, or because employers would not take them on.

A final report is being prepared once our analysis is complete. We will also write a summary and let all the people who took part in the research know the results. We intend to produce a summary of findings which are most relevant to young people with LTNCs generally.

Summer 2009 Update

The analysis is complete and the final report was submitted in January 09. Peer review comments have been received and are being considered. The report will be available as a download as soon as it has been signed off (summer 2009).

The resource for young people is being worked on with the help of young men with DMD who took part in the study. MDC have agreed to disseminate this. In addition, MDC have agreed to publish a 60 page abridged version of the final report and will disseminate it.

Winter 2009 update

The study is now complete

The Full Final Report or a Summary are now available for download.

 

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