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

• Autores: Janet Hoskin
• Localización: British journal of special education, ISSN 0952-3383, Vol. 44, Nº. 2, 2017, págs. 165-185
• Idioma: inglés
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• Resumen

  • 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.