New study to investigate impact of Motor Neurone Disease on relationships
- Date
- 4 February 2025
- Time to read
- 6 min read
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Researchers from the University of Suffolk have launched a new pilot study exploring how Motor Neurone Disease (MND) impacts relationships within couples.
Initial studies suggest that MND and Amyotrophic Lateral Sclerosis (ALS) – a progressive disease which affects nerve cells in the brain and spinal column – can impact couples’ relationships as the partner or spouse has to adjust to new roles providing care.
Those impacts include reduced intimacy, worsening communication, changes to relationships with others, and declining health for the spouse giving care.
With little research currently existing on how MND and ALS impact spouse and partner relationships, the University of Suffolk’s Institute of Health and Wellbeing is conducting an important initial study which will gather testimonies from those with lived experience and begin to address the challenges.
Couples where one of the partners has MND or ALS are being sought to take part, to help better understand the challenges faced by couples, and identify support that can help them.
Dr Noreen Cushen-Brewster, Associate Dean for Research and Knowledge Exchange in the University’s School of Nursing, Midwifery and Public Health and theme lead for long term conditions in the Institute of Health and Wellbeing, is leading the study.
She said: “From informal discussions with people who cared for loved ones impacted by MND, it was clear that couples face additional challenges beyond the healthcare problems associated with the disease.
“The feedback from those living with these challenges will help us develop a robust research proposal that will identify clear packages of support at each stage of the MND journey, and once established we will look to seek funding to develop these further to test them with patients and their spouses.
“We also hope that this initial work will aid local commissioning of future services.”
Motor Neurone Disease is a condition which affects the cells in the brain and nerves called motor neurones, with those cells gradually declining over time. Those with the illness can struggle with moving, swallowing and breathing, while the condition can also shorten life expectancy and lead to death.
The study is being funded by Norfolk and Waveney Integrated Care Board’s research and development team, and supported by Research Capability Funding, and supported by East Coast Community Healthcare.
The study will feature virtual or in-person workshops where researchers will work alongside those with MND, their partners, healthcare professionals, service commissioners and voluntary sector groups. The workshops will focus on co-designing interventions that will support couples navigating MND.
There is also an opportunity to become a part of a patient and public involvement group, which will help influence the development of interventions and support the grant application process for future research to test those interventions on those with lived experience.
Feedback from participants for the initial study will be collated until the end of March.
To take part in the study or find out more from the researchers, please contact n.cushen-brewster2@uos.ac.uk.
To find out more about the work of the Institute of Health and Wellbeing, visit the website here.