Save Our Sons Duchenne Foundation are proud to announce that after 6 years of research, in association with Telethon Kids Research Institute and an esteemed, multidisciplinary collaboration of clinicians and researchers, our first qualitative paper has been published looking at the benefits of maintaining standing in boys with Duchenne muscular dystrophy.
The project looked at standing wheelchairs / powered wheelchair standing devices (PWSD), and the multiple challenges for adolescents with Duchenne in achieving independence, mental and social well being in their daily lives, when they are losing or have lost their ability to stand independently due to the progression of Duchenne.
Duchenne muscular dystrophy is a common neuromuscular disorder involving progressive muscle weakness. A powered wheelchair standing device provides capacity to stand despite increasing muscle weakness. Our study used qualitative methods to explore how adolescents with Duchenne used a powered wheelchair standing device in their daily lives.
Loss of walking imposes a substantial challenge on young adolescents with Duchenne. Adolescence is a time of physical change with strong desire for independence and increased need for social relationships. For most young people, this period is a healthy, happy experience, however for some it can be characterised by health, social and academic challenges.
The quality of peer relationships is described as one of the strongest indicators of current and future psychological health in adolescents. Our qualitative data suggests that the standing wheelchairs supported the capacity of the boys to participate in a range of meaningful activities with greater autonomy, despite the progression of their disease, and beyond what would be possible with existing therapeutic regimes involving standing frames. As is the case for their peers in the general population, it would seem reasonable and necessary for adolescents with Duchenne to experience the independence and participation in daily life afforded by having the option of choosing when and where to stand, after they are unable to walk.
Our overall finding was that the power wheelchair standing device provided “capacity to be able”which mitigated some of the multiple challenges for adolescents with Duchenne in achieving independence, mental and social well being in their daily lives.
Our research is pivotal and timely with the need within the NDIS (National disability Insurance Scheme) to show evidence that maintaining standing in Duchenne has clinical and psycho social benefits, and the additional cost of the standing function in a power chair is ‘reasonable and necessary’.
The powered wheelchair standing devices are an expensive piece of equipment costing between $15,000 – $30,000 more than a more standard model of wheelchair. But what price can be put on improving the health and well-being of young people living with Duchenne?
Save Our Sons Duchenne Foundation provide funding to ensure that those with Duchenne can access this life changing and quality of life enhancing equipment. This is only possible with the support of our donors, sponsors and national partner Chemist Warehouse.
This important quality of life research sits alongside the many research projects Save Our Sons Duchenne Foundation have, and are currently funding into potential therapies to treat Duchenne, in our fight for a cure.
We are continuing our commitment to this immensely valuable research with more publications in the coming months.
Read more in the full publication Vorster 2019 Qualitative PWSD
Written by Klair Bayley on 28th February 2019 Executive Officer Clinical Care and Advocacy