Planning for the future with Duchenne muscular dystrophy – identifying support structures and approaches that can help: a review of the literature

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  2. Dr Pauline McCormack
Author(s)McCormack P
Editor(s)
Publication type Conference Proceedings (inc. Abstract)
Conference NameTREAT-NMD International
Conference LocationGeneva, Switzerland
Year of Conference2011
Legacy Date8-11 November 2011
Volume
Pages
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This research discusses the available literature on quality of life with muscular dystrophy and asks if different approaches to medical care, social care and family life can have an effect on well being. The poster will look particularly at what aspirations and plans families and boys with DMD have for the future and how this might be being influenced by the clinical care and service support they receive. In addition, it will examine what current and past messages parents, boys and young men take from the diagnostic process and on-going care.Men with DMD in the UK are living longer than ever before and improvements in medical care should mean this upward trajectory of life expectancy continues. However, there is a gap between this new reality and providing the care and support which can enable men with DMD to live fulfilled adult lives. The danger is that the lives made possible by medicine will be limited further than necessary in terms of key aspects of quality of life, in particular social participation, independent living and aspirations. In addition, work on transitions to adulthood for men with DMD shows: there has been little systematic thought about teenagers’ and young men’s futures; medical advances have not been matched by support at home and in the community; and even that support for people with DMD lags behind that of other disabled groups. This paints a disconcerting picture of young men with ‘a strong desire to ‘get on’ with the ordinary business of family life...often hampered by a lack of support from services’ (Abbott and Carpenter 2009, p146).This poster will summarise the issues around future planning for fulfilled adulthood with DMD and point to structures and approaches which families find useful, as well as identifying areas for future investigation and research.
PublisherTREAT-NMD
URLhttp://www.treat-nmd-conference.org/registration/poster-abstracts/social-ethical-issues/