Search results for ‘Subject term:"muscular dystrophy"’ Sort:
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Transition to adulthood for young men with Duchenne muscular dystrophy and their families: final report to the Department of Health
- Authors:
- ABBOTT Dave, CARPENTER John, BUSBY Kate
- Publisher:
- Great Britain. Department of Health. Research Initiative for Long Term Neurological Conditions
- Publication year:
- 2009
- Pagination:
- 164p., bibliog.
- Place of publication:
- London
Improvements in the management of Duchenne Muscular Dystrophy (DMD) have meant that young men are reaching stages of adulthood that were not previously anticipated and are looking forward to the prospect of living independently with appropriate support. The objectives of this study were to investigate, from the perspective of these young men, how their health and well being, and that of their parents, can be maximised during this transition. A postal survey was sent to all parents with a son with DMD aged 15 or over living in the South West and West Midlands and the North East of England. Interviews were conducted with 40 young men, their parents and siblings (n=102) about growing older and the issues they face in transition such as support, independence, education and beyond, and their social lives and relationships. All but three of the families characterised their overall experience of service provision as problematic. They felt there was insufficient specific information about options and choices. Difficulties were reported in accessing and fully participating in further education; only one young man had experience of paid work. There were wide variations in the nature and level of support available. The way families talked about living with DMD was highly individual and a clear theme was that the young men preferred not to think about it very much and wanted to “live for the day” and get on with the ordinary business of being a family.
Living with Duchenne muscular dystrophy: relational autonomy and decision-making
- Author:
- SKYRME Sarah
- Journal article citation:
- Children and Society, 30(3), 2016, pp.220-229.
- Publisher:
- Wiley
Interviews were conducted with boys and young men who have Duchenne muscular dystrophy, exploring their thoughts on making a decision to participate in medical research. This article focuses on one of the key findings, discussing how the participants identified their parents as carers, spokespersons and advisors. The term ‘relational autonomy’ encapsulates these co-operative relationships, illustrating how they can help young people living with a degenerative disability to exercise some agency and autonomy. The boys and their families have demonstrated how disabled children who are physically dependent can be supported by their parents, without compromising independence. (Publisher abstract)
‘Wasting precious time’: young men with Duchenne muscular dystrophy negotiate the transition to adulthood
- Authors:
- ABBOTT David, CARPENTER John
- Journal article citation:
- Disability and Society, 29(8), 2014, pp.1192-1205.
- Publisher:
- Taylor and Francis
Young men with Duchenne muscular dystrophy (DMD) have until recently died before they reached adulthood. Now they are living longer but with a corresponding lack of forethought about how they should be supported in adulthood. This study investigates what is happening for young men with DMD and how they were being supported in three areas of England. Semi-structured interviews were conducted with 37 young men (aged 15+) with DMD and 58 other family members. The findings suggested that too many young men had finished education and training and were at home during the day without meaningful activity. In part, the complicated nature of shifting expectations across the life-course had made planning for an adult life with DMD very challenging. This could be exacerbated by problematic assumptions and stubborn barriers. (Edited publisher abstract)
Becoming an adult: transition for young men with Duchenne muscular dystrophy
- Authors:
- ABBOTT David, CARPENTER John
- Publisher:
- Muscular Dystrophy Campaign
- Publication year:
- 2010
- Pagination:
- 45p., bibliog.
- Place of publication:
- London
The last few years have seen significant improvements in the ways Duchenne muscular dystrophy (DMD) is managed. As a result young men with DMD are now living longer than ever before and face a particular set of challenges as they reach adulthood. Those aged over 15 who are the focus of this study, have reached or are reaching stages of adulthood that were at the time of their childhood largely unexpected and unplanned. The research focussed on the transition from childhood to adulthood for young men with Duchenne – how it affects their families and the key professionals who support them. It explored transition in two senses: firstly the social and psychological aspects of this major life stage; and secondly the transition from one set of services to another. The research found that the rights and needs of young men with DMD are being severely restricted by the failure of services to provide good planning and support. There was an absence of examples of formal transition planning as is required by law and government guidelines. Eighty per cent of parents reported clinical levels of anxiety and depression. Most young men had very limited social opportunities or friends beyond their immediate family.
Becoming a man: life with Duchenne muscular dystrophy
- Authors:
- MCLEAN Craig, MCLEAN Liam, ABBOTT David
- Publisher:
- Muscular Dystrophy Campaign
- Publication year:
- 2010
- Pagination:
- 14p.
- Place of publication:
- London
This booklet summarises a report produced by Bristol University and reports on the experiences of 40 young men aged 15 to 33 with Duchenne muscular dystrophy (DMD). The research examined issues including educational experiences, support received, the expectations from services as sufferer’s age, and living with DMD. The research found that the rights and needs of young men with DMD are being severely restricted by the failure of services to provide good planning and support. Although around half the families were involved in some planning for transition from school and from children's to adults' services, there was a stark absence of examples of formal transition planning as is required by law and government guidelines. Eighty per cent of parents reported clinical levels of anxiety and depression. Most young men had very limited social opportunities or friends beyond their immediate family. Only one had any experience of paid work. Others who had looked for work had faced insurmountable obstacles. This booklet offers useful information to find the support required.
“The things that are inside of you are horrible”: children and young men with Duchenne Muscular Dystrophy talk about the impact of living with a long-term condition
- Authors:
- ABBOTT David, CARPENTER John
- Journal article citation:
- Child Care in Practice, 21(1), 2015, pp.67-77.
- Publisher:
- Taylor and Francis
Duchenne muscular dystrophy (DMD) is an inherited, progressive and life-limiting neuromuscular disease that affects boys. During their lives, they experience a series of medical and surgical interventions. Research reported in this paper took place in England with 37 young men living with DMD and their families and explored their experiences of growing up, school, work, friends and family. In accordance with the social model of disability, this research was initially reluctant to dwell on the physiological aspects of living with a long-term, degenerative condition. The authors focused on social model concerns about the disabling barriers to the participants' participation in society, the disabling responses of professionals and barriers to achieving their aspirations. However, young people with DMD also wanted to talk about how living with the condition caused them considerable pain and discomfort. They also explained the emotional impact of medical and surgical interventions. They reported very few opportunities to discuss these matters with family members or professional. Possible reasons for the absence of discussion about these issues are explored and the authors reflect on the consequences for both the young person and their family. The authors suggest that a reluctance to tackle the thorny issue of “body” and “impairment” in social science research with disabled children and young people means that important aspects of childhood disability are under-explored. (Edited publisher abstract)