Investigating the coping strategies and interaction with healthcare of people living with Motor Neurone Disease
Lead Research Organisation:
University of Stirling
Department Name: Health Sciences
Abstract
Motor Neurone Disease is a terminal illness with no known cause or cure. People diagnosed with this illness gradually lose their ability to move, speak, eat and breathe, this can mean people may end their lives with a body unable to react to any commands but a mind which is still engaged and active.
Research shows that it is not only the physical symptoms of this illness, but the effects upon family life, working life, changing sense of identity and social life that greatly affect the quality of life of people with Motor Neurone Disease.
At present medical care focuses upon the physical symptoms of this illness but although we know the psychological and social effects of this illness are just as devastating there is very little research into how to help people with Motor Neurone Disease deal with this. This project aims to investigate, through interviewing people with Motor Neurone Disease and others involved in their care, to better understand how people cope with the emotional effects of Motor Neurone Disease and the actions they take so they can find satisfaction in their life. To understand these issues will allow us to provide better healthcare for people with Motor Neurone Disease that meets all their needs not just their physical needs.
Research shows that it is not only the physical symptoms of this illness, but the effects upon family life, working life, changing sense of identity and social life that greatly affect the quality of life of people with Motor Neurone Disease.
At present medical care focuses upon the physical symptoms of this illness but although we know the psychological and social effects of this illness are just as devastating there is very little research into how to help people with Motor Neurone Disease deal with this. This project aims to investigate, through interviewing people with Motor Neurone Disease and others involved in their care, to better understand how people cope with the emotional effects of Motor Neurone Disease and the actions they take so they can find satisfaction in their life. To understand these issues will allow us to provide better healthcare for people with Motor Neurone Disease that meets all their needs not just their physical needs.
Organisations
Studentship Projects
| Project Reference | Relationship | Related To | Start | End | Student Name |
|---|---|---|---|---|---|
| ES/P000681/1 | 01/10/2017 | 30/09/2027 | |||
| 2473569 | Studentship | ES/P000681/1 | 01/10/2020 | 31/12/2024 | Nicola Glennie |
| Description | 3 minute thesis presentation |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Postgraduate students |
| Results and Impact | I presented the MND diary project research proposal to fellow postgraduate students and academic staff at the annual post graduate retreat meeting. This enabled engagement and discussion with my peer group and constructive feedback on presentation skills. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Blog post for Motor Neurone Disease Association's research blog |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | I was asked to write a blog post to explain the research project. The intended purpose was to increase awareness of the project and to encourage recruitment and participation in the research. After the blog post traffic to the research projects own blog increased. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://mndresearch.blog/2022/02/08/dear-diary-using-diaries-to-understand-the-challenges-of-mnd/ |
| Description | Blog post for Motor Neurone Disease Association's research blog |
| Form Of Engagement Activity | Engagement focused website, blog or social media channel |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Following publication of the journal article I was asked to write a blog piece explaining the findings of the journal article in lay terms for the MND Association's research blog. An incidental outcome of this blog post was that a research participant who I had lost contact with happened to see the article and contacted me so we were able to continue with their participation in the project. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://mndresearch.blog/2022/10/20/regaining-control-why-open-conversation-might-help-manage-anxiet... |
| Description | Online presentation to NHS Research Scotland Neuroprogressive and Dementia Network |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | Invited to present information about the research project to the NHS Research Scotland Neuroprogressive and Dementia Network webinar series. This increased awareness of the research among healthcare professionals, patient groups and potential participants. There were questions and discussion afterwards which showed interest in the research project. The presentation also enabled me to make connections with key people in the NHS Research Scotland Neuroprogressive and Dementia Network. |
| Year(s) Of Engagement Activity | 2022 |
| Description | Presentation to charity support group |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Short online presentation and question session about the research project to a charity support group session, attended by people living with Motor Neurone Disease and their families/carers. The intended purpose was to increase awareness of the research project and that I was recruiting participants. Impacts following the session were development of a good working relationship with the charity involved and I also had a couple of potential participants contact me after the talk. |
| Year(s) Of Engagement Activity | 2022 |