RCT of virtual peer-to-peer support programme for carers of MND
Research type
Research Study
Full title
A virtual peer-to-peer support programme for informal caregivers of individuals with motor neurone disease at risk of becoming or currently technology-dependent: randomised controlled trial
IRAS ID
292922
Contact name
Louise Rose
Contact email
Sponsor organisation
King's College London
Clinicaltrials.gov Identifier
Duration of Study in the UK
3 years, 0 months, 1 days
Research summary
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.
Results SummaryThis study of a 12-week online peer support programme compared to usual care recruited 149 family caregivers of people living with motor neurone disease from across the UK over three years. The programme included a dedicated peer supporter, weekly discussion forums via Zoom, 2 ask the expert sessions, a chat forum, and informational resources We measured anxiety, depression and caregiver burden at six and twelve weeks. We also measured positive aspects of caregiving including mastery and personal gain. We used statistical modelling that accounted for people’s baseline questionnaire scores when they entered the study, and demographic and caregiving characteristics. We found no difference in anxiety and depression in caregivers that received the peer support intervention and those that did not. However, attendance at the weekly discussion forums, which we considered an important part of the intervention, was only moderate. We identified reduced caregiver burden at six weeks in caregivers receiving the digital support intervention.
We interviewed 20 caregivers who received peer support, and 5 peer supporters to understand what they liked about the peer support programme and reasons why they did or did not attend the discussion forums. Caregivers and peer supporters liked the social connection, helpful suggestions generated by the group, and inclusive environment. For caregivers, this helped to normalise their experiences. Some caregivers and peer supporters found the intervention made them “face reality” which could be confronting. Some also expressed concerns about group dynamics at the weekly discussion forums.
REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
21/NW/0269
Date of REC Opinion
18 Nov 2021
REC opinion
Further Information Favourable Opinion