Transition to adulthood for young men with DMD

Research output: Contribution to journalArticle (Academic Journal)peer-review

Abstract

Aim: To explore the tensions around transition to adulthood for a group of young men living with Duchenne Muscular Dystrophy. Methods: Qualitative interviews with 40 young men with DMD and their families in three regions of the UK. Explored current arrangements, hopes for the future and possible barriers to a successful transition to adulthood. Also considered different models of transition arrangements from child to adult health services. Results: Findings suggest that families were reluctant to think about the future whilst at the same time, wanting, as far as possible, opportunities to do the’normal things of youth and adulthood’. Formal processes of transition planning were rarely successful, if in place at all. Significant barriers to post 16/school services existed and social and relationship opportunities for young people were limited. There were differences in satisfaction levels with arrangements for transition from child to adult health services. Conclusion: Young people with DMD and their families tread a difficult tightrope between not thinking about the future, alongside trying to ensure that young men have a ‘good life’. This necessarily involves some degree of planning for the future. Statutory services were not routinely offering helpful, individualised support. As a result, young men in the study did run the risk of becoming isolated at home and not having age-appropriate and engaging ways of spending their time.
Translated title of the contributionTransition to adulthood for young men with DMD
Original languageEnglish
Pages (from-to)820 - 820
Number of pages1
JournalNeuromuscular Disorders
Volume18
DOIs
Publication statusPublished - 2008

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