TRANSITION TO ADULTHOOD:THE EXPERIENCE AND NEEDS OF YOUNG MEN WITH DUCHENNE MUSCULAR DYSTROPHY AND THEIR FAMILIES

Duchenne Muscular Dystrophy (DMD) is an inherited neuromuscular disease which affects boys. Until recent advances in medical care, the mean age of death was 19. These young people and their families have complex medical, health care, psychological, educational and social needs requiring coordinated cross-agency working, particularly at the key point of transition to adulthood. The aims of this research are to:

1. To investigate, from their own perspectives, 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. To assess the potential contribution made by the NSF for long term conditions to the development of health, social care, education and employment services for this group of service users, including the implementation and impact of direct payment schemes for this group of young people.
3. To develop conceptual and theoretical frameworks for understanding the relationships between people with long term conditions, their carers and services.
4. To identify lessons for a range of long-term neurological conditions affecting young adults and their carers at transition to adulthood.

The study shall employ a population questionnaire survey in the North East, South West and West Midlands regions (N = 160 approx.), semi-structured interviews with young people/men, their siblings and their carers (n = 100 approx.), and with professionals from a range of concerned agencies within the different regions.