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

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.

An Integrative Review Exploring Psycho-Social Impacts and Therapeutic Interventions for Parent Caregivers of Young People Living with Duchenne’s Muscular Dystrophy

“…Parents reported having feelings of loss, sadness and depression [ 9 , 10 ] as they lived with their child’s condition but identified their main psychological issue as their distress and worry for the future [ 11 , 12 ]. These parents experienced significantly greater stress than parents of healthy children and where their child also had difficulties in social interactions, this further increased stress levels [ 13 ].…”

“…Good parental health and management of stress is reliant on responsive community services [ 9 , 10 , 30 ] and supportive health professionals [ 29 ]. Attendance at support groups, where parents can discuss their fears and anxieties, gain advice on resources, and expand their knowledge, is seen to reduce levels of stress and aid good psycho-social adjustment [ 28 ].…”

“…Creating opportunities for socialization is an important intervention, not just for the young person but the parent [ 9 , 23 , 24 ]. Social support is frequently used by caregivers as a coping strategy [ 24 ], and, whilst it can be challenging, the benefits are clear [ 23 ].…”

“…Parents found that engaging in support groups gave them access to practical advice, emotional support, and helped them to understand their child’s condition better [ 24 ]. Sharing and improving knowledge is linked with active coping [ 6 ], giving parents power and the voice to advocate for their child [ 9 ].…”

“…Similarly, there is recognition that good parental health and management of stress is reliant on responsive community services [ 9 , 10 , 30 ] and supportive health professionals [ 29 ]. However, some families struggled to access resources and had to fight for services, identifying a lack of joined up thinking as a barrier to consistent care [ 9 ]. Without a fuller understanding of these critical access issues, it is difficult to draw any conclusions regarding factors influencing this situation.…”