Virtual peer support programme for carers of MND
RCT of virtual peer-to-peer support programme for carers of MND
UK Chief Investigator
Providing care as a family member or friend of a person with motor neurone disease is challenging and may negatively impact the caregiver’s wellbeing. This negative impact can increase as the person’s disease progresses to needing support for feeding and breathing. Unfortunately, at present there are no studies identifying effective strategies to support these caregivers.
Peer support, an organised form of support provided by and for people with similar conditions, problems or experiences, is a strategy shown to help caregivers of people with conditions such as dementia. Peer support can be in-person; however, this may create problems for people with high caregiving demands, or social or living conditions preventing participation. Virtual peer support is more accessible and may be better than in-person peer support delivery. However, there are no studies confirming benefits of virtual peer support for informal caregivers of people with motor neurone disease at risk of or needing breathing or feeding support. Our study proposes to address this gap.
We will test if a 12-week virtual peer support programme developed by our team can improve caregivers’ mood and being able to manage and cope with their caregiving situation. The programme allows people to chat using text, audio, or video connections with a weekly group chat and discussion boards. We will recruit informal caregivers from clinics, services and organisations providing care or support to people with motor neurone disease. We will use a research method that enables all people that agree to the study, the chance to be in the programme. However, half of those that agree will only receive usual supports so we can compare their mood, burden and coping skills with people receiving the programme. We will ask people how they liked the programme and study which features are used and how often.
Inclusion / exclusion criteria
Age > = 18 years;
Family/informal caregiver of an individual with MND living at home who is being considered for or receiving any of the following (i.e., entering King’s clinical staging Stage 4A: nutritional support; or Stage 4B: respiratory support) (a) assisted ventilation (b) cough assist (c) gastroscopy and enteral feeding
Able to speak/read English;
Has access to a computer, tablet, or smartphone and the internet; and
Consents to participation (Note: in situations of social deprivation (i.e., no access to smartphone, tablet, computer and/or the internet) we will be able to lend a 4G enabled Android tablet).
NOTE: Caregivers may continue participation based on their own preference in the study if their family/informal member dies during the 12-week intervention. We will ask participants to notify both their mentor and the research team in this event. These participants will have usual access to bereavement supports available to them.
Receiving active psychiatric/psychologist care identified through self-report prior to consent. Participation in other research is not an exclusion but will be assessed by the CI/research team for appropriateness.
Active – recruiting
Guys & St Thomas' NHS Hospital Trust
Participant identification centres (PICs):
Informal caregivers of an individual with MND.
Actual opening date: 7th June 2022
Recruitment planned end date: 2nd August 2024
King's College London
Intervention (if applicable)
Education or Self-Management
Psychological & Behavioural
Phase (if applicable)
1. Hospital Anxiety and Depression Scale (HADS);
2. Positive and Negative Affect Schedule;
3. Zarit Burden Interview;
4. Pearlin Mastery Scale;
5. Personal Gain Scale;
6. Brief COPE.
Publications / Results reports
Links will be provided when papers are published.
Participant information sheets
Participant information sheet (PDF, 183KB)