‘Wasting precious time’: young men with Duchenne muscular dystrophy negotiate the transition to adulthood

Disability and Society

Volumn 29, Issue 8, 2014, Pages 1192-1205

  Abbott, David ^a   Carpenter, John ^a  

^a UNIVERSITY OF BRISTOL   (United Kingdom)

Author keywords

Duchenne muscular dystrophy; life course; transition; young disabled men

Indexed keywords

EID: 84926073542     PISSN: 09687599     EISSN: 13600508     Source Type: Journal    
DOI: 10.1080/09687599.2014.916607     Document Type: Article

References (38)

1. Abbott, D. 2012. “Other Voices, Other Rooms: Reflecting on Talking to Young Men with Duchenne Muscular Dystrophy and Their Families about Transition to Adulthood.” Children & Society 26 (3): 241–250.
2. Abbott, D. 2013. “Who Says What, Where, Why and How? Doing Real World Research with Disabled Children, Young People and Family Members.” In Disabled Children’s Childhood Studies: Critical Approaches in a Global Context, edited by T. Curren and K. Runswick-Cole, 39–56. Basingstoke: Palgrave.
3. Abbott, D., and J. Carpenter. 2009. Becoming an Adult: Transition for Young Men with Duchenne Muscular Dystrophy (DMD). London: Department of Health.
4. Barnardo’s. 1996. Transition to Adulthood. Essex: Barnardo’s.
5. Beresford, B. 2004. “On the Road to Nowhere? Young Disabled People and Transition.” Child: Care, Health and Development 30 (6): 581–587.
6. Burns, N., N. Watson, and K. Patterson. 2013. “Risky Bodies in Risky Spaces: Disabled People’s Pursuit of Outdoor Leisure.” Disability & Society. doi:10.1080/09687599.2012.749180.
7. Clarke, S., P. Sloper, N. Moran, A. Franklin, and J. Beecham. 2011. “Multi-Agency Transition Services: Greater Collaboration Needed to Meet the Priorities of Young Disabled People with Complex Needs as They Move into Adulthood.” Journal of Integrated Care 19 (5): 30–40.10.1108/14769011111176734
8. Commission for Social Care Inspection (CSCI). 2007. Growing up Matters: Better Transition Planning for Young People with Complex Needs. London: CSCI.
9. Connors, C., and K. Stalker. 2007. “Children’s Experiences of Disability: Pointers to a Social Model of Childhood Disability.” Disability & Society 22 (1): 19–33.
10. Crow, L. 1996. “Including All Our Lives: Renewing the Social Model of Disability.” In Exploring the Divide, edited by C. Barnes and G. Mercer, 52–72. Leeds: The Disability Press.
11. Department for Children, Schools and Families (DCSF), Department of Health & Council for Disabled Children. 2007. A Transition Guide for All Services: Key Information for Professionals about the Transition Process for Disabled Young People. Nottingham: DCSF.
12. Department for Education and Skills. 2001. SEN Code of Practice & SEN Toolkit. London: DfES.
13. Dreyer, P., B. Steffensen, and B. Pederson. 2010. “Life with Home Mechanical Ventilation for Young Men with Duchenne Muscular Dystrophy.” Journal of Advanced Nursing 66: 753–762.
14. Eagle, M., S. Baudouin, C. Chandler, D. Giddings, R. Bullock, and K. Bushby. 2002. “Survival in Duchenne Muscular Dystrophy: Improvements in Life Expectancy since 1967 and the Impact of Home Nocturnal Ventilation.” Neuromuscular Disorders 12: 926–929.10.1016/S0960-8966(02)00140-2
15. Eagle, M., J. Bourke, R. Bullock,. 2007. “Managing Duchenne Muscular Dystrophy – the Additive Effect of Spinal Surgery and Home Nocturnal Ventilation in Improving Survival.” Neuromuscular Disorders 17: 470–475.10.1016/j.nmd.2007.03.002
16. French, S. 1993. “Can You See the Rainbow? The Roots of Denial.” In Disabling Barriers: Enabling Environments, edited by J. Swain, V. Finkelstein, S. French, and M. Oliver, 72–77. London: Sage.
17. Gibson, B., N. Young, R. Upshur, and P. McKeever. 2007. “Men on the Margin: a Bourdieusian Examination of Living into Adulthood with Muscular Dystrophy.” Social Science and Medicine 65 (3): 505–517.10.1016/j.socscimed.2007.03.043
18. Gibson, B., H. Zitzelsberger, and P. McKeever. 2009. “‘Futureless Persons’: Shifting Life Expectancies and the Vicissitudes of Progressive Illness.” Sociology of Health & Illness 31 (4): 554–568.
19. Gibson, B., B. Mistry, B. Smith, K. Yoshida, D. Abbott, S. Lindsay, and Y. Hamdani. 2013. “Becoming Men: Gender, Disability, and Transitioning to Adulthood.” Health. doi:10.1177/1363459313476967.
20. Hastie, J. 2012. A Life worth Living: Pushing the Limits of Duchenne. http://www.alifeworthlivingfilm.com.
21. Heslop, P., R. Mallett, K. Simons, and L. Ward. 2002. Bridging the Divide at Transition: What Happens for Young People with Learning Difficulties and Their Families? Kidderminster: BILD.
22. Holdsworth, C., and D. Morgan. 2005. Transitions in Context: Leaving Home, Independence and Adulthood. Berkshire: Open University Press.
23. Hudson, B. 2006. “Making and Missing Connections: Learning Disability Services and the Transition from Adolescence to Adulthood.” Disability & Society 21 (1): 47–60.
24. Jones, G. 2002. The Youth Divide: Diverging Paths to Adulthood. York: Joseph Rowntree Foundation.
25. Kirk, S. 2007. Young People’s Experiences of Living with Medical Technology. Manchester, NH: School of Nursing, Midwifery & Social Work, The University of Manchester.
26. Moola, F., and M. Norman. 2011. “‘Down the Rabbit Hole’: Enhancing the Transition Process for Youth with Cystic Fibrosis and Congenital Heart Disease by Re-Imagining the Future and Time.” Child: Care, Health and Development 37 (6): 841–851.
27. Morris, J. 1992. “Personal and Political: A Feminist Perspective on Researching Physical Disability.” Disability, Handicap & Society 7 (2): 157–166.
28. Morris, J. 1999. Hurtling into a Void: Transition to Adulthood for Young People with Complex Health and Support Needs. York: Joseph Rowntree Foundation.
29. Morris, J. 2002. Young Disabled People Moving into Adulthood. York: Joseph Rowntree Foundation.
30. Rahbeck, J., B. Werge, A. Madsen, J. Marquardt, B. Steffensen, and J. Jeppesen. 2005. “Adult Life with Duchenne Muscular Dystrophy: Observations among an Emerging and Unforeseen Patient Population.” Developmental Neurorehabilitation 8 (1): 17–28.10.1080/13638490400010191
31. SCIE. 2007. ‘Necessary Stuff’: The Social Care Needs of Children with Complex Health Care Needs and Their Families. London: SCIE.
32. Silverman, D. 2001. Interpreting Qualitative Data. London: Sage.
33. Shuttleworth, R., N. Wedgwood, and N. Wilson. 2012. “The Dilemma of Disabled Masculinity.” Men and Masculinities 15 (2): 174–194.
34. Thomas, C. 1999. Female Forms: Experiencing and Understanding Disability. Buckingham: Open University Press.
35. Townsley, R., D. Abbott, and D. Watson. 2004. Making a Difference? Exploring the Impact of Multi-Agency Working on Disabled Children with Complex Health Care Needs, Their Families and the Professionals Who Support Them. Bristol: The Policy Press.
36. Watson, N. 2012. “Theorising the Lives of Disabled Children: How Can Disability Theory Help?” Children & Society 26 (3): 192–202.
37. Wedgwood, N., G. Llewellyn, A. Honey, and J. Schneider. 2008. “The Transition of Adolescents with Chronic Health Conditions from Paediatric to Adult Services. Australian Research Alliance for Children and Youth.” Accessed May 15 http://www.aracy.org.au/publicationDocuments/TOP_The_Transition_of_Adolescents_with_Chronic_Health_Conditions_from_Paediatric_to_Adult_Services_2008.pdf
38. Yates, S., and A. Roulstone. 2013. “Policy and Transitions to Training and Work for Disabled Young People in the UK: Neo-Liberalism for Better and for Worse?” Disability & Society 28 (4): 456–470.