We are jointly funding a project with Marie Curie to support Kings College in creating a network of peer support volunteers. These volunteers will provide peer support for carers of people with late stage MND (using NIV/PEG feeding). Kings College will undertake research into the effectiveness and impacts to carers that such peer support provides.
The ideal candidate to become a peer support volunteer is someone with lived experience of caring for someone with MND.
What will peer supporters do?
What commitment is required?
Sign up process and training
What training will I receive?
The ideal candidate to become a peer support volunteer is someone with lived experience of caring for someone with MND.
What will peer supporters do?
- Communicate directly with carers on a weekly basis, using an app (similar to Whatsapp but more secure) to provide support for the issues faced by carers of people affected by MND
- Build up knowledge of the resources and support available for carers
- Help to signpost family carers of people affected by MND to available resources and services
- Participate in the weekly online forums providing carers with an opportunity to discuss their issues
- Explain to carers how the MND Association can support them.
What commitment is required?
- The time required is flexible, but we expect Peer Supporters to commit to a minimum of 1.5-2 hours per week for 12 weeks. This includes one-on-one communication with family carers and participation in a weekly discussion forum. You will be able to continue with other volunteering activities alongside this role.
- You will be linked to a family carer for a 12 week period. Some people may feel like they can support more than one carer at a time. You can discuss this with the research team. After the first 12 week period, we hope you would be interested in supporting another family carer for another 12 week period. The research team will discuss this with you.
Sign up process and training
- If you are interested in learning more about being a peer supporter in this research study, please email Ella Terblanche or Thilipan Thaventhiran, who are research officer at King College London, [email protected] or [email protected].
- One of their friendly research team will give you call to explain more about the role. If you are suitable for the role and think you would like to be involved, the research team will provide you training on the app and on peer support, so you are confident to be a peer supporter.
What training will I receive?
- They will provide you with one-on-one training (via Zoom) on how to use the ‘aTouchAway’ app to send text messages and make audio or video calls. We will schedule this training at a time that suits you.
- They will also provide you with three one-hour virtual group training sessions on peer support with other peer supporters. Sessions will include topics such as building relationships, boundary settings, looking after yourself as a peer supporter, and managing risk, distress, and disclosures.
- They will also provide you with a Peer Supporter manual. The research team will also be available via email Mon-Fri 9am to 5pm to help you if you have any concerns of issues while you are a peer supporter.
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