Taking charge and letting go: exploring the ways a Transition to Adulthood project for teenagers with Duchenne muscular dystrophy has supported parents to prepare for the future

Article


Hoskin, J. 2017. Taking charge and letting go: exploring the ways a Transition to Adulthood project for teenagers with Duchenne muscular dystrophy has supported parents to prepare for the future. British Journal of Special Education. 44 (2), pp. 165-185.
AuthorsHoskin, J.
Abstract

The new Special Educational Needs and Disability legislation in the Children and Families Act 2014 intends to raise the aspirations of young people with special educational needs and their families, and improve their life outcomes. But what do raised aspirations and better outcomes look like for young people who have a life-limiting impairment? This article draws on data from a parent evaluation of a lottery-funded Transition to Adulthood project for boys with Duchenne muscular dystrophy (DMD), called ‘Takin’ Charge’, focusing in particular on whether or not the project helped parents of boys with DMD prepare for the future. Key themes that emerged were the importance and novelty of older role models with DMD in the project who were able to share their journeys into adulthood, the support between families that the project enabled, the meaning of family resilience and aspirations for a normal life. The use of solution-focused questioning with families affected by a life-limiting impairment is also explored.

KeywordsDuchenne muscular dystrophy; life-limiting impairment; Children and Families Act 2014; resilience; aspirations
JournalBritish Journal of Special Education
Journal citation44 (2), pp. 165-185
ISSN0952-3383
1467-8578
Year2017
PublisherWiley
Accepted author manuscript
License
Digital Object Identifier (DOI)doi:10.1111/1467-8578.12173
Web address (URL)https://doi.org/10.1111/1467-8578.12173
Publication dates
Print29 Jun 2017
Publication process dates
Deposited03 Jul 2017
AcceptedFeb 2017
Copyright informationThis is the peer reviewed version of the following article: Hoskin, J. (2017), Taking charge and letting go: exploring the ways a Transition to Adulthood project for teenagers with Duchenne muscular dystrophy has supported parents to prepare for the future. British Journal of Special Education, 44: 165–185, which has been published in final form at doi:10.1111/1467-8578.12173. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving.
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