Project

Muscle Help Foundation Impact study: Evaluation of the impact of Muscle Dream experiences– PEDHS15

An evaluation of the impact of Muscle Dream experiences for young people diagnosed with Muscular Dystrophy and their families.

Background

The Muscle Help Foundation charity, a small family-run and family-centred charity is running a national campaign called ‘The Power of 657’, to deliver 657 transformational wish fulfilment experiences called ’Muscle Dreams’, for children, young people and their families with Muscular Dystrophy across the UK – that’s one life-changing, cherished moment-in-time for every muscle in the human body. A Muscle Dream is a wish-fulfilment activity for a young person and their family that are particularly conceived and delivered with consideration of the needs and challenges that Muscular Dystrophy creates and places on young people and those who care for them.

This study used data including user-satisfaction reports to investigate the impact of Muscle Dreams for young beneficiaries and their families. This includes a study investigating the experiences of parents whose children died after a Muscular Dystrophy diagnosis.

University of Hertfordshire Clinical Psychology researchers work closely with Michael McGrath as founder, CEO and ‘Chief Muscle Warrior’ and others from MHF to ensure we align with the ethos, values and commitments of MHF.

Project aims

  • Evaluate the impact of the Muscle Dream experience for young people and their family members
  • Understand the narratives of parents whose children accessed a Muscle Dream and subsequently died

Project activity

To analyse user satisfaction questionnaire data gathered as standard by MHF to understand how Muscle Dreams are experienced

To analyse spontaneously reported impact of Muscle Dreams from young people and their families (e.g. written accounts in correspondence with MHF following a Muscle Dream experience)

To undertake individual and/or couple interviews with parents whose child with a diagnosis of Muscular Dystrophy has died to understand their narratives of grief and the impact that the Muscle Dream had.

Actual impact

Materials have been created for the Muscle Help Foundation to highlight the powerful and lasting impact of Muscle Dreams for beneficiaries and their families. MHF hopes that this will support their ability to deliver further Muscle Dreams, by encouraging others to nominate potential beneficiaries and by supporting their fundraising work.

There is very limited research that looks at the impact of wish fulfilment – it is hoped that this research adds to the limited research evaluating the impact of this work undertaken in the charitable sector. In addition, this research highlights some of the specific benefits of the unique approach of the MHF to wish fulfilment that others offering similar opportunities could learn and benefit from.

Papers/resources associated with this study

Submitted, awaiting peer review:

  • Nolte, L., Ragaven, R., Randall-James, J. & Wellsted, D. (submitted) “A pocket of smiles in difficult times” – a mixed method retrospective cross-sectional evaluation of the impact of a wish-fulfilment experience for children with life-limiting illness and their families, Childhood.

Next steps

A press release has been created to aim to raise wider awareness of the research and the work of MHF.

Recent activity

Press release, and initial media coverage

Disclaimer

James Randall and Romila Ragaven undertook parts of this research as part of the requirements of completing the Doctorate in Clinical Psychology course and David Welsted and Lizette Nolte provided supervision for those aspects of the research.

Related projects

This research builds on previous research (not with MHF), namely:

Bereaved parents’ stories of their emotional relationships with their surviving children following the death of another (see:  Shankar, S.J., Nolte, L. & Trickey, D. (2017) Continuing bonds with the living: bereaved parents’ narratives of their emotional relationship with their children, Bereavement care, 36(3): 103-111)

Dr David Wellsted, Head Centre for Lifespan & Chronic Illness Research (CLiCIR) at University of Hertfordshire and the Centre are involved with wider research alongside MHF.

Researchers and institutions

UH: James Randall, David Wellsted, Romila Ragaven

Contact:

Lizette Nolte

University of Hertfordshire

l.nolte@herts.ac.uk