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A web-based decision aid being developed for people considering a gastrostomy

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    A web-based decision aid being developed for people considering a gastrostomy

    Are you a person caring for someone with MND or a healthcare professional involved in the gastrostomy decision making process? Researchers leading the DiAMoND study at the University of Southampton need your help to develop and pilot test their web-based decision aid (DA) for people with MND considering a gastrostomy feeding tube (often referred to as a ‘PEG’ or ‘RIG’).

    The feedback you provide will help the researchers improve the decision aid developed to support people with MND (and their carers) making the decision on whether to have a gastrostomy feeding tube in the future.

    Who is invited to take part?
    • People caring for someone with MND
    • Healthcare professionals working with individuals with MND
    • Must be able to participate in English, aged 18 or above, and living in the UK.
    What would I need to do?

    This study is currently looking for people to take part in a ‘think aloud’ interview to give feedback on the web-based decision aid by working through it and giving your thoughts as you go. The web-based decision aid will be viewed on your computer/laptop/tablet.

    Interviews of approximately 60 minutes will be conducted by a researcher from the University of Southampton via Microsoft Teams (video call) at a time and date convenient for you.

    Where do I find more information?

    Find out more on our website:www.mndassociation.org/research/get-involved-in-research/take-part-in-research/diamond.

    Please contact the DiAMoND study team at [email protected] if you would like to take part or have any questions about this study.
    Our working hours are Monday to Friday 8:30am until 5pm

    #2
    Hello admin, just wondering why people with MND aren’t invited, it’s only our bodies that stop working not our minds,
    or are our thoughts not worthy of consideration, or am I missing a point
    s
    As long as there’s golf and beer I’m happy

    Comment


      #3
      Shaun, I had a quick look at the study and it seems that, over the entire trial, the plan is to recruit 40 people with MND, 25 carers and 25 healthcare professionals so, either they have the 40 already signed up or earmarked and only need the other cohorts, or the OP is mistaken?
      ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      Comment


        #4
        Thanks Ellie, it was just the way it was written, seemed a bit odd and insensitive

        S.
        As long as there’s golf and beer I’m happy

        Comment

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