Michael McGrath – CEO of The Muscle Help Foundation discusses academic research with University of Hertfordshire
The following article was written by Michael McGrath – CEO of The Muscle Help Foundation
Recently I had the pleasure of working with the University of Hertfordshire* to carry out a first of its kind piece of academic research to help understand the impacts wish-fulfilment experiences have on the lives of children and young adults living with life limiting conditions such as Muscular Dystrophy.
Knowing that such interventions deliver hope, confidence, new skills and empowerment as well as joy, are immensely powerful impacts for children and young adults living with a disability.
Michael McGrath CEO Muscle Help Foundation
The support from the University in analysing The Muscle Help Foundation’s insights was incredible and the results far exceeded what we had expected. I know first-hand of course just how positive the impacts of our Muscle Dreams experiences are for our beneficiaries as I am always there to help deliver them and make sure they are the most wonderful experiences possible. But I wanted to really be able to robustly prove that the impacts are far reaching not only in the short term, but long term too.
This is the only known research in existence to robustly investigate and validate the transformational impacts that highly personalised dream fulfilment experiences such as taking the controls of an aircraft and experiencing level flight, enjoying the thrill of a passenger ride in a high-performance racing car, learning a new skill, or meeting a sporting hero, can have on the lives of those living with conditions such as Muscular Dystrophy
The results were overwhelmingly positive. Increased confidence (70%), self-esteem (76%) starting new hobbies (66%) feeling empowered to achieve life goals (73%) and developing new skills (61%) are just some of the key impacts wish fulfilment experiences can provide.
The study analysed data from 82 individual wish-fulfilment experiences delivered by us here at The Muscle Help Foundation covering a six-year period, as well as wider qualitative data from 152 participants analysed to understand more specifically what it was about the experiences that was described as valuable or transformative.
The findings offer rich and detailed qualitative and quantitative analysis on the impact of the experiences both from the perspective of the young person and the wider family. The study found that wish-fulfilment experiences:
- enhance quality-of-life
- allow recipients to realise their potential, develop new skills and grow confidence
- are important in facilitating ongoing engagement and preventing isolation
- provide meaningful time away from the day-to-day challenges associated with living with a life-limiting condition
The research also highlights the need for ongoing efforts to create a society where disabled young people can have access to recreational activities and can live fully as citizens in their communities without disability being a barrier.
The whole ethos of the charity I set up 18 years ago is rooted in the idea that well executed experiences that fulfil a young person’s dreams and aspirations, can be powerfully transformative to their lives; and I speak from experience when it comes to that. Now that we have strong research that validates just how life enhancing such experiences are, it reinforces the need and urgency to deliver even more, so that the lives of more young people can be further enriched. Knowing that such interventions deliver hope, confidence, new skills and empowerment as well as joy, are immensely powerful impacts for children and young adults living with a disability.
I thought it would also be useful to share a few quotes from the academic team that carried out the research project.
Dr Lizette Nolte, Principle Lecturer and researcher on the Doctorate in Clinical Psychology programme at the University of Hertfordshire who was part of the research team that completed the study, says
“The research robustly demonstrates the positive and lasting impacts on ‘confidence’, ‘self-esteem’ and the ‘restoration of hope’ for beneficiaries and their families of these personalised experiences, as well as helping to counter experiences of social exclusion. Such experiences provide accessibility and participation to anyone with a disability, especially children, in a way that is often not possible in everyday life.”
14yr-old Bertie pictured above has Muscular Dystrophy and has recently adjusted to using a power chair. Bertie loves music and the drums! Bertie took part in a case study in July 2021 to explain why young people like him need your support. Click the button below to learn more.
“Whilst the sample size analysed is relatively small, we have carried out in depth qualitative and quantitative assessment which has delivered robust findings. Since our analysis, The Muscle Help Foundation has now delivered a total of 422 wish fulfilment experiences and it is safe to say, based on the research findings, that the positive impacts and benefits of those experiences will have been felt by all beneficiaries.”
Dr Lizette Nolte
Dr James Randall, clinical psychologist and visiting lecturer at the University of Hertfordshire who was also part of the academic research team adds:
“All of our research highlights the urgent need to develop and expand ways for young people with life-limiting conditions to be given more opportunity to live full and meaningful lives. A society not structured to be accessible and enabling of children and young people living with disabilities can be very isolating for them as well as their families. Wish-fulfilment activities matter a great deal and the benefits have lasting positive impacts.”
Dr James Randall
And we’re also incredibly grateful to our ambassador, TV presenter Lorraine Kelly, who says:
“This research just proves how invaluable and life-changing wish fulfilment experiences like those delivered by the Muscle Help Foundation are in providing hope, empowerment, confidence and enabling children and young adults with life limiting conditions like Muscular Dystrophy, to truly realise their potential. This level of life-enhancing enrichment is needed now more than ever, especially as the impacts of the pandemic have forced so many of these families into an almost permanent state of isolation.”
As a consequence of COVID-19, we had no choice but to change our operational strategy; we re-purposed from our face-to-face ‘Muscle Dreams’ experiences to delivering everything online. We created a suite of virtual music, art and laughter sessions, as well as an innovative ‘In Conversation With’ broadcast initiative with inspiring guests and personalities designed to engage our beneficiaries and families across the UK. The Muscle Help Foundation was also kindly supported by a BBC Children in Need funding award to help deliver more of these online experiences during the pandemic, which proved a lifeline to so many.
So what next? Well now that we have validation of the truly transformational impacts of our experiences, we know we have to continue our vital work. We are running a national campaign called ‘The Power of 657’ and our mission is simple; to deliver 657 transformational wish fulfilment experiences for children, young people and their families with Muscular Dystrophy in the UK – that is one life-changing experience for every muscle in the human body. For the charity’s beneficiaries, every ‘Muscle Dreams’ experience is an opportunity to realise their potential. For their family and friends, each one opens up a support network of like-minded individuals. The charity has so far delivered 422 ‘Muscle Dreams’ experiences with 235 to go to reach their overall target.
To deliver the remaining 235 experiences in a virtual way, which is the safest approach right now rather than delivering them in person, we need to raise £100,000 and we’re calling on the public to help us get to that target so we can enhance the lives of even more children living with Muscular Dystrophy. People can donate via our website here https://www.musclehelp.com/powerof657
About The Muscle Help Foundation
The Muscle Help Foundation (MHF) is a charity delivering highly personalised, transformational experiences in the UK for children and young adults (8-28yrs) with the muscle wasting condition, Muscular Dystrophy (MD). The charity, now in its 18th year, organises and facilitates personalised events, experiences and activities, which they call ‘Muscle Dreams’, for young people with Muscular Dystrophy or related muscle-wasting conditions and their families.
Rooted in the idea that well executed, shared experiences can be powerfully transformative in nature, the charity has touched the lives of 1000’s of people across the UK, from families and local communities to schools and businesses – its impact and reach continues to grow. These highly personalised, restorative experiences are uplifting, joyful and often cathartic in nature.
For more information on the work of the charity visit:
About the University of Hertfordshire
The University of Hertfordshire brings the transformational impact of higher education to all. Its students, staff and businesses consistently reach their full potential. Through TEF Gold rated expert teaching, 550 degree programmes, cutting-edge research projects and powerful business partnerships, they think bigger, stand out and positively impact local, national and international communities. For more information, visit www.herts.ac.uk
*The study was carried out by The University of Hertfordshire in partnership with The Muscle Help Foundation between 2015 and 2018 and assessed data from 82 routinely collected wish-fulfilment questionnaires delivered by The Muscle Help Foundation, as well as wider qualitative data from 152 participants, analysed to understand more specifically what it was about the Muscle Dreams that was described as valuable or transformative, covering a six-year period between 2010-2016. Methodology: A mixed-method, cross-sectional retrospective design was followed. Descriptive statistical analyses were carried out on beneficiary feedback questionnaires. Thematic analysis was carried out on the qualitative data. Themes were extracted from this data which were then used to generate codes which were then aligned to key themes. The study offers rich and detailed analysis of data gathered over a six-year period, both from the perspective of the young person and the wider family.