Transitioning to adulthood with DMD V1
Research type
Research Study
Full title
A co-production research study set in the context of improved treatment and management of Duchenne Muscular Dystrophy (DMD) examining how young people with DMD in the UK and Europe reflect on their experiences and perceived development of identity during transition into adulthood.
IRAS ID
299786
Contact name
SUZANNE GLOVER
Contact email
Sponsor organisation
Pathfinders Neuromuscular Alliance
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
The aim of this study is to explore life experiences of young people with Duchenne Muscular Dystrophy (DMD) transitioning from adolescence into adulthood. This is because during this time young people typically experience many changes within themselves and how they see the world around them.
DMD is a condition that causes continuous muscle weakness. It is normally diagnosed in early childhood. People with DMD experience greater muscle weakness as they grow older affecting their ability to move their body and breathe without support. Adults living with DMD require around-the-clock care for all personal and medical care, for example assistance with tasks like feeding, dressing, and physiotherapy. Some people with DMD use equipment to support their breathing. Although developments in treatment and care for people with DMD has improved, those with the condition have a reduced life expectancy.
This research aims to develop an understanding of the lives of young people in the UK and Europe living with DMD. It hopes to understand how they reflect on their experiences of becoming an adult and how feel about themselves. This research is a co-production project, this means that research will be carried out by those living with DMD and other muscle weakening conditions, supported by Pathfinders Neuromuscular Alliance. Pathfinders is an organisation led by and for people with neuromuscular conditions. Pathfinders has a team of peer researchers that will conduct 20 interviews with other young people with DMD from the United Kingdom and Europe.
The research will be the first of its kind to explore how young people with DMD see their experience of becoming an adult and how they see themselves. The research aims to find ways to improve the transition to adulthood for young people by understanding the needs and wishes of young people with DMD.REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
21/YH/0245
Date of REC Opinion
24 Sep 2021
REC opinion
Favourable Opinion