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

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    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 n 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.

    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.

    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?

    If you wish to participate or find out more about the study, please contact the study research team: Rebecca Rogers or Thilipan Thaventhiran on [email protected]. You can also find out more information on our website here.
    Our working hours are Monday to Friday 8:30am until 5pm

    #2
    We will soon be opening recruitment of caregivers and are still looking for peer supporters. Please contact us at [email protected] for more information.

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      #3
      Do you have experience of caring for someone with MND? We are a research team based at King's College London and are looking for volunteers to become online peer supporters on our MNDA/Marie Curie funded research trial. We will provide six hours of online training and ongoing support throughout the 12-week support programme. Please contact Rebecca or Thilipan at [email protected] if you would like to find out more.

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