Bereavement Research Project

New insights revealed from bereavement research of parenthood following the death of a child with Muscular Dystrophy

Posted on 2nd October, 2019

 

The Muscle Help Foundation (MHF) is pleased to share the following research report carried out by Dr James Randall as part of his 2yr Doctorate in Clinical Psychology (DClinPsy) thesis at the University of Hertfordshire.

Over and above the recently published impact report here, this was a standalone Major Research Project (MRP) conducted through the University of Hertfordshire and MHF that sought to evaluate how parents who have lost a child to Muscular Dystrophy describe life with their child and following their child’s death.

Dr Lizette Nolte, Project Tutor on the Doctorate in Clinical Psychology (DClinPsy) course (Department of Psychology & Sport Sciences) was the academic supervisor.

As a prelude to this research a project presentation was made by our CEO Michael McGrath to a group of Clinical Psychology students in July 2015. Knowing that students would then negotiate with their supervisors about particular project ideas, following other organisational presentations, and that only a few would be taken forwards, added to the overall experience. According to Dr Lizette Nolte, the ensuing Q&A was a ‘lively, productive and inspirational’ affair.

 

Michael McGrath, MHF’s Founder & CEO said:

“When this new journey with James began, I was acutely aware of the sensitivities around bereavement and its impact on families. Over many years, I’ve had often overwhelming conversations with primarily dads but also with some mums about the passing of their sons and daughters, conversations that had a profound impact on me, conversations that will never be forgotten. I’ve grieved with them, I’ve listened to them, I’ve felt their loss.

No one can prepare you for such deeply personal conversations and yet, they’ve reaffirmed to me that whilst remembering their sons and daughters lives with love, humour and joy, life with Muscular Dystrophy is challenging – it brings adversities like no other, it brings exclusion and discrimination.

One of the concluding points that emerged from James’s thesis that stood out for me was the idea that a Muscle Dream intervention, the currency of an inclusive experience, can… <’help parents make sense of the loss of their child in a way that helps them move forwards, offering not only an emotional and psychological ‘lifting’ within the experience itself, but also in part, sustaining parents throughout their bereavement’>.

REPORT TITLE

‘Narrative accounts of parenthood following the death of a child with Muscular dystrophy’

UH MHF JRJ bereavement PhD thesis summary

 

Authors:

Randall-James, J (2018)

PhD Thesis Manuscript

Department of Psychology & Sport Sciences

University of Hertfordshire

Click HERE for .pdf

Ref Source 1:           *University of Hertfordshire Research Archive (UHRA)
Publication Date:      5th March 2018
URL Link:                Click HERE to open

*The UHRA is a repository of the research produced by the University of Hertfordshire. Research in UHRA can be viewed and downloaded freely by researchers and students all over the world.

 

Ref Source 2:         *Semantic Scholar
Publication Date:   June 2017
URL Link:               Click HERE to open

*Semantic Scholar is a project at the Allen Institute for Artificial Intelligence (AI2). AI2 was founded to conduct high-impact research and engineering in the field of artificial intelligence. AI2 is funded by Paul Allen, Microsoft co-founder, and led by Dr. Oren Etzioni, a world-renowned researcher and professor in the field of artificial intelligence. AI2 is a free, non-profit academic search engine.

 

Ref Source 3:         *ResearchGate
Publication Date:   June 2017
URL Link:                   Click HERE to open

*ResearchGate is a social networking site for scientists and researchers to share papers, ask and answer questions, and find collaborators

 

Michael McGrath, MHF’s Founder & CEO continued:

“And yet in death, I’ve witnessed the strength, the courage and the joyful remembrance of life’s precious moments from many families who have lost a son or daughter to Muscular Dystrophy – and in all of those conversations over the years, the power of their loved ones lasting legacy prevails.

More so today than ever before, frequent references are being made by families saying that they feel ‘a sense of belonging’, ‘connected’, ‘a part of our Muscle Warrior tribe’ and that they hold close a ‘powerful shared spirit’ that lives on through the lives and memories of their sons and daughters.

The results from this report refer to ‘stories of change’, ‘stories of surviving’ and ‘stories of creating change’ – I hope these findings will further enhance and fortify our knowledge and understanding in recognising the numerous hardships and substantial changes that a family’s life must endure as a result of a diagnosis of Muscular Dystrophy.”

 

RESEARCH OVERVIEW – EXCERPTS FROM SUMMARY REPORT

  • The research included an interest in what seemed to be important measures in a parent’s story, the ways in which these are understood to bring meaning to difficult circumstances, and how these influence an individual’s, parent’s and family’s sense of self.
  • Existing research highlighted that the time of diagnosis, important developmental milestones, the young person becoming an adult, and decision-making and planning for end-of-life care, were important matters to hold in mind.
  • There was also a heightened level of curiosity about how families develop and grow together to face not only daily adversities and challenges, but also opportunities that they encountered in relation to Muscular Dystrophy, such as the intervention of a Muscle Dream

 

The Muscle Help Foundation
Reg Charity No. 1096716

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