A Life Worth Smiling About: Experiences of Young People with Neuromuscular Disease Participating in the Duke of Edinburgh’s Award

Abstract

For a variety of reasons, the daily life experiences of young people living with neuromuscular disease are typically modified to a level that is potentially disengaging. This study explored the experiences of eight young people with neuromuscular disease and their eight parental caregivers participating in the well-known Duke of Edinburgh’s Award, offered though a community support organisation, the Muscular Dystrophy Association New South Wales. This program encourages young people to experience challenge, adventure and gain new skills and has, thus far, never been available to persons with a neuromuscular disease. Semi-structured interviews, conducted with each young person-parental caregiver dyad, were recorded and transcribed verbatim before being analysed using principles of constructivist grounded theory methodology. Participants, called Dukies, and their parents described their initial motivations for enrolling in the Award, including the opportunity for the Dukies to engage in the community and participate in new activities and learn new skills. They also reported a number of outcomes for the Dukie including: a new outlook and purpose in life, increased self-belief, independence, and social confidence. Parents described learning to ‘let go’ and having quality time for themselves and other family members. A number of essential ingredients enhanced participation for the Dukies including: choice, challenge and access to resources and supports for parents. The Duke of Edinburgh’s Award is an example of an intervention resulting in increased participation for children and young people with neuromuscular disease, who are expected to fulfil the same criteria as able-bodied peers. Findings of the current study will inform development of community-based programs and serve to advocate for programs with similar philosophies to be developed.