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Thread: Psychological Flexibility in ALS Patients

  1. #1
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    Psychological Flexibility in ALS Patients

    Greetings all,

    My wife was diagnosed with Motor Neurone Disease (Amyotrophic Lateral Sclerosis) in early 2014 and, since January 2015, I have been caring for her on a full-time basis. In addition, I am also a student researcher in the field of psychology at the University of New England in New South Wales, Australia. I am passionate about improving our understanding of the role psychological factors play in people with MND / ALS. I am currently conducting research in this area and invite you to participate. Participation involves completing some online surveys that take about 15-20 minutes. If you’re interested, please find more details attached / below (including a link to the participation page).
    Thank you for taking the time to consider my request.

    Regards,
    James Pearlman

    Click this link to go directly to the study...
    http://unebcss.co1.qualtrics.com/jfe...4tcc6B6e06Wipv

  2. #2
    Forum Member Ellie's Avatar
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    Important note.

    “The survey questions may cause psychological or emotional stress.”

    Please be aware this survey asks many difficult questions, including; prolonging or not prolonging your own life; your feeling towards loved ones; multiple quality of life questions.

    If you are anyway fragile atm, think before you do this survey please. You may be faced with issues you have yet to think about.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
    Forum Member Terry's Avatar
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    Thanks for the warning, Ellie;

    I will have a look later on when I have more time.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
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    Hello All,

    Please be advised that we are continuing to recruit participants for this study until late August 2017. All you have to do to participate is complete the online survey (takes around 15 minutes) by clicking on the link in the post at the start of this thread.

    Thank you for your consideration.

    Regards,
    James Pearlman

  5. #5
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    May 2017
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    9
    Hello All,

    Recruiting for this study will be finalised over the coming weeks. If you wish to participate, please read the attachment and follow the link. Participation involves completing an online survey that takes around 15 minutes.

    Thanks again for considering this request.

    Regards,

    James Pearlman

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