Online peer-to-peer support programme for carers of MND

Understanding the impact of a virtual peer support programme on psychological wellbeing and caregiver burden on family caregivers of people with MND

This study will explore how a 12-week virtual peer support programme with peer supporters who have experienced caring for someone with MND can affect carer wellbeing and experience. Volunteers take on the role of a Peer Supporter and will be trained to provide peer support to family caregivers through an online app (similar to WhatsApp).

Family caregivers play an important role to enable people with MND to continue living at home. Yet they often do not receive enough support and can feel alone going through an experience not shared by others. People who have lived experience of caring for someone with MND can have the understanding and empathy to support family carers navigate their caregiver journey.

Peer mentoring can bring together a family caregiver, who is interested in talking to someone who has lived through the experience of caring for someone with MND, with a volunteer who is willing to share their experiences and offer support and insights. This study is led by Professor Louise Rose at King’s College London and supported by the MND Association and Marie Curie.

The study is recruiting current family carers of individuals with MND to participate in the trial and we are also seeking volunteers who have had experience of caring for someone with MND to act as peer supporters.

What does taking part involve?

Peer supporters will receive training on how to provide one-on-one support using text messaging or calls via an App (similar to WhatsApp) to other carers. This involves sharing knowledge of resources available to carers and participating in online discussions.

Current caregivers of someone with MND will be randomised into the intervention arm (virtual peer-to-peer support) or the control arm (self-directed access to educational resources). Questionnaires will be completed by all participants.

Study location

UK-wide

Who can take part?

Peer supporters. These are people who have experience of caring for someone with MND and are:

  1. willing to support other carers
  2. good communicators
  3. able to develop and maintain supportive relationships

Unpaid family (or informal) caregivers of individuals with MND living at home who are referred for consideration or receiving any of the following:

  1. assisted ventilation
  2. cough assist
  3. gastroscopy and enteral feeding

All participants need to be able to speak/read English and be willing to communicate remotely and must be over 18 years old.

How can I take part?

For further information, please contact the study research team: Rebecca Rogers or Thilipan Thaventhiran on peersupport@kcl.ac.uk

Funding

MND Association and Marie Curie Charity

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