Exploring the impact of the ALS/MND journey on the relationship between partners/spouses
Initial research studies suggest that having an MND diagnosis and the subsequent progression of the disease has a profound impact on the relationships between partners/spouses. In particular, the literature suggests that MND can lead to changes in partner relationships through partners/spouses having to adjust to new roles, changes in communication, declines in caregivers’ health and wellbeing, changes in intimacy, and changes to external relationships outside of the person living with MND/caregiver pair.
Despite it being evident that the ALS/MND journey has an impact on the relationship between people with MND and their informal caregivers, little research exists which specifically examines the changes that ALS/MND can cause to partner/spouse relationships and what support is needed to help couples during the MND journey.
The aim of this proposed study is to develop a better understanding of the challenges faced by couples and how best to support couples during the MND journey through developing connections with the MND community and building a team of interested parties. The researchers hope to then develop a targeted intervention to address the challenges highlighted.
Taking Part
What does taking part involve?
The researchers are looking to develop a meaningful research study that explores topics that could make a difference by discussing it with you. The aim is to gain input on the design of the study to ultimately help find potential solutions that may help future patients, and their partners navigate this difficult journey.
Taking part will involve joining virtual or in-person workshops alongside individuals with MND, their partners, healthcare professionals, commissioners, and voluntary groups. These workshops will focus on co-designing an intervention that meets the needs of couples navigating the MND journey. If you’re not comfortable in group settings, the researchers can also arrange individual conversations to ensure your voice is heard and your perspective is included.
In addition, there’s the chance to become part of a Patient and Public Involvement (PPI) group, which plays a key role in shaping the development of this intervention. As a member of the PPI group, you will contribute to taking the project forward, including helping to prepare for a grant application, ensuring that this work can have a meaningful impact in the real world.
Who can take part?
Have been diagnosed with ALS/MND
A long term partner/spouse of an individual with a diagnosis of ALS/MND
Able to give consent
How can I take part?
The researchers would like to speak to you via Zoom or MS Teams, If you are interested in helping design this study or would like more information, please contact a member of the research team:
Dr Noreen Cushen-Brewster at [email protected]
Dr Ella Malloy at [email protected]
Prof Sarah Corrie at [email protected]
Study location
UK-wide
Funding
This research is funded by Research Capability Funding.