Virtual Peer-to-Peer Support for Informal Caregivers of Individuals with Motor Neurone Disease at Risk of Becoming or Currently Technology-Dependent

This is a non-commercial randomised controlled trial that aims to determine the efficacy of a 12-week virtual peer-to-peer support programme on informal caregiver psychological health and caregiver burden.
Those participants randomised to the intervention arm will have access to a 12-week virtual peer-to-peer support programme.
We will collect the following caregiver outcome measures at baseline and on completion of the 12-week programme:
- Hospital Anxiety and Depression Scale (HADS)
- Positive and Negative Affect Schedule
- Zarit Burden Interview
- Pearlin Mastery Scale
- Personal Gain Scale
- Brief COPE.
In addition, we will collect the following endpoints on completion of the 12-week programme from intervention participants only:
- One item 9-point Likert on the usability of the peer-to-peer support programme host platform aTouchAway
- Usage metrics
- Semi-structured qualitative interview data on the acceptability of the peer-to-peer support programme.
Those participants randomised to the control arm will receive usual care which comprises self-directed access to the MND Association Visitors programme and MND Association educational resources via their website. Participants will be asked to complete questionnaires at baseline and at 12 weeks.
Aims
Our primary objective is to determine the effect of the virtual peer-to-peer support programme on the psychological distress of informal caregivers from baseline to completion of the 12-week programme.
Our secondary objectives are to:
- Determine the effect of the virtual peer-to-peer support programme on caregiving outcomes including burden; mastery; personal gain; and coping
- Understand how participants use the programme ie, was the intervention delivered as intended (fidelity and reach)
- Understand the perceived usability of the virtual peer support programme
- Understand the perceived acceptability of the online peer support programme.
Methods
Randomised controlled trial
Trials Design
Parallel group
Work that has informed Virtual Peer-to-Peer Support for Informal Caregivers of Individuals with Motor Neurone Disease at Risk of Becoming or Currently Technology-Dependent includes:
There is growing recognition that informal caregiving is a serious public health issue requiring supportive interventions. Informal caregivers play an essential role in sustaining a stable environment enabling individuals with motor neurone disease (MND) that become technology-dependent to live at home. The informal caregivers can experience exceptional burden and significant decline in psychological wellbeing due to MND’s rapid and progressive nature with profoundly debilitating effects and intensive support needs. Dependence on assistive technology adds an additional level of complexity to informal caregiving due to the need to learn how to operate and troubleshoot medical devices, train other caregivers, and negotiate appointments with new specialities within the healthcare system.
Despite the recognised impact of caregiving for individuals with MND, data are scarce as to effective interventions that provide direct practical and psychosocial supports. As the burden of caring increases due to disease progression and increasing technology dependence, access to existing informal support networks may diminish. Virtual peer-to-peer support is a flexible and low-cost form of support. Peers, people who have experienced the same health problem and have similar characteristics as support recipients, can be a key source of emotional, informational, and affirmational support. Peer support improves the psychological well-being of caregivers of people with conditions such as dementia, cancer, and brain injury. Although some peer support programmes for informal caregivers of people with MND do exist, data as to their efficacy are limited.
Work that has informed Virtual Peer-to-Peer Support for Informal Caregivers of Individuals with Motor Neurone Disease at Risk of Becoming or Currently Technology-Dependent includes:
There is growing recognition that informal caregiving is a serious public health issue requiring supportive interventions. Informal caregivers play an essential role in sustaining a stable environment enabling individuals with motor neurone disease (MND) that become technology-dependent to live at home. The informal caregivers can experience exceptional burden and significant decline in psychological wellbeing due to MND’s rapid and progressive nature with profoundly debilitating effects and intensive support needs. Dependence on assistive technology adds an additional level of complexity to informal caregiving due to the need to learn how to operate and troubleshoot medical devices, train other caregivers, and negotiate appointments with new specialities within the healthcare system.
Despite the recognised impact of caregiving for individuals with MND, data are scarce as to effective interventions that provide direct practical and psychosocial supports. As the burden of caring increases due to disease progression and increasing technology dependence, access to existing informal support networks may diminish. Virtual peer-to-peer support is a flexible and low-cost form of support. Peers, people who have experienced the same health problem and have similar characteristics as support recipients, can be a key source of emotional, informational, and affirmational support. Peer support improves the psychological well-being of caregivers of people with conditions such as dementia, cancer, and brain injury. Although some peer support programmes for informal caregivers of people with MND do exist, data as to their efficacy are limited.
Our Partners
Principal Investigator
Louise Rose
Head of Division, Applied Technologies for Clinical Care and Professor of Critical Care Nursing
Affiliations
Funding
Funding Body: Marie Curie
Amount: £271,952
Period: November 2021 - November 2024