An Exploration of DMD Experiences of Children's Hospices
Research type
Research Study
Full title
An exploration of the experiences of young men with Duchenne Muscular Dystrophy of children's hospices and their value in preparing them for life as adults.
IRAS ID
174777
Contact name
Elizabeth Leigh
Contact email
Sponsor organisation
Cardiff University
Duration of Study in the UK
1 years, 0 months, 31 days
Research summary
Duchenne Muscular Dystrophy (DMD) is a degenerative disease of the muscles mainly affecting boys. The life expectancy of these boys has increased significantly over the last few decades so that they are now surviving into their twenties and thirties, where as, 30 years ago they died in their teens.The study plans to explore the experiences of young men with Duchenne Muscular Dystrophy of children's hospices, allowing them to reflect on their past experiences. The experiences would be explored using semi-structured interviews which would then be transcribed verbatim and then analysed for themes. The study aims to answer the question whether the current approach to care taken by children's hospices remains appropriate for this group of patients in view of their improved life expectancy.
The patients will be recruited from a young adult's hospice in Oxford, having attended a children's hospices in the United Kingdom.Ethical considerations, including those of bias and non-maleficence would need to be addressed.
The study may be distressing for some of the young men recalling their experiences of the children's hospice they attended, particularly if they had friends who had died during that time.
The aim of the study would be to gain a better understanding of the experiences of these young men in addition, to inform practice and ensure that care offered to boys with DMD at children's hospices is what the patients think is in their best interest and is appropriate for their improved prognosis, in preparing them for life as adults.REC name
South Central - Oxford C Research Ethics Committee
REC reference
15/SC/0535
Date of REC Opinion
6 Oct 2015
REC opinion
Favourable Opinion