Why it matters: Initial studies show MND can significantly impact couples as partners adjust to new caregiving roles, leading to reduced intimacy, worsening communication and declining health for the spouse providing care.
The details: The University of Suffolk's Institute of Health and Wellbeing is conducting research to:
Gather testimonies from couples where one partner has MND or Amyotrophic Lateral Sclerosis (ALS)
Identify support needs at different stages of the disease
Develop interventions through virtual or in-person workshops
Work alongside healthcare professionals, service commissioners and voluntary sector groups
What they're saying: "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," said Dr Noreen Cushen-Brewster, Associate Dean for Research at the University's School of Nursing, Midwifery and Public Health and theme lead for long term conditions.
For context: MND affects cells in the brain and nerves called motor neurones, which gradually decline over time. The condition can impact movement, swallowing and breathing while also shortening life expectancy.
What's next: The study, funded by Norfolk and Waveney Integrated Care Board's research and development team, Research Capability Funding and East Coast Community Healthcare, will collect feedback until the end of March.
Researchers plan to use the findings to develop support packages and seek further funding for testing with patients and spouses.
The bottom line: Couples affected by MND can participate in the study or join a patient involvement group by contacting n.cushen-brewster2@uos.ac.uk.
