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An exploration of the role of an online support forum for people affected by MND.

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    #1

    An exploration of the role of an online support forum for people affected by MND.

    We would like to invite you to take part in our research study which aims to explore how online communities, more specifically the Motor Neurone Disease Association (MNDA) online forum, can help individuals affected by MND to navigate some of the challenges associated with the disease. Previous research has identified that online communities such as online forums can be useful to those affected by chronic illness, but none to date specifically for motor neurone disease.

    We hope this study will help to build on our understandings of what the most beneficial ways are to support individuals affected by MND.

    What does taking part involve?

    The study will involve you taking part in an interview which is not a traditional face-to-face interview. It will be conducted online using Microsoft Forms, and you will be asked to type your answers to the questions. There will not be an interviewer to respond to your answers. You will be asked questions about your experience with MND and your experience with the MNDA online forum.

    The study should not take any longer than 30 minutes.

    Eligibility criteria:
    • To have a diagnosis of MND, or to be a close family member of someone who does.
    • To have experience using the MNDA online forum
    • 18+ years of age
    • Living in the UK
    If you decide to take part, you will have the opportunity to win one of five Amazon vouchers as a gratitude of your time.

    If you would like to participate or have any questions, please contact Erin Cartwright via email on [email protected]
    Our working hours are Monday to Friday 8:30am until 5pm
    Tags: None
    #2
    I contacted Erin but didn't get attachments. 🤔 so I cant do anything.
    when i can think of something profound i will update this.

    Comment

      #3
      denise I didn’t get them either 1st time. When I told her she said they had not uploaded properly and sent again successfully.
      Diagnosed June 2019. Bulbar palsy. Lost voice. Using PEG fitted April 2021 alongside eating normally albeit slowly and messily at times.

      Comment

        #4
        Originally posted by Admin_MND View Post
        We would like to invite you to take part in our research study which aims to explore how online communities, can help individuals affected by MND to navigate some of the challenges associated with the disease.
        Obvious init.

        But a comprehensive care app would be better.

        Comment

          #5
          Well Graham get a move on.
          when i can think of something profound i will update this.

          Comment

            #6
            Patience please, my Queen of Pain...

            The Cramps Queen of Pain
            https://www.youtube.com/watch?v=3_ZKmkqtd48
            Hello , voila the cramps , et pis chez tout


            I'm doing a chat facility.

            Hugs, cuddles and snake bites xxxx
            • Likes 2

            Comment

              #7
              If you would like to participate in this study, please email the researcher by Friday 24th June. If you have any questions about the study, please do not hesitate to get in touch with the researcher.

              Many thanks,
              Forum Administrator
              Our working hours are Monday to Friday 8:30am until 5pm

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