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Thread: Take part in a new research project

  1. #1
    MND Association Digital Media Manager
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    Jun 2011
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    Take part in a new research project

    Hello!

    We are Peter Bath and Julie Ellis – researchers in the Information School at University of Sheffield in the UK:
    http://www.sheffield.ac.uk/is

    We are carrying out a new study that is looking at how people with serious illnesses (and their relatives and close friends) use the Web to share information and to discuss their experiences. We are also interested in how people build trust with others and empathise with them online. The aim of the study is to develop a better understanding of how people share information in online environments when they have been diagnosed with a life-threatening, terminal or chronic condition.

    To learn more about what people share and how they build relationships with others online, we want to talk to people because we think it is really important to hear people’s explanations about their online sharing in their own words.

    We are looking for volunteers 18 years+ to be interviewed about sharing online. If you have a diagnosis of MND or are involved in caring for someone who does, you use the mnda forum and you think you might be able to help us, then please do get in touch. Our contact details are at the end of this message.

    We realise that you may have questions you would like to ask before you agree to be interviewed. That’s fine. If you get in touch, we can send you further information about the study and what taking part in an interview will involve.

    We will share the findings from this research with the MND Association to help develop online services for people affected by MND. We really hope that this study will be helpful to individuals and organisations that set up web-sites for people to share their stories and experiences about living with illness in the future.

    If you think you can help - we’d love to hear from you.

    If you’d like to learn more about taking part in an interview, please contact Julie at: julie.ellis@sheffield.ac.uk or you can call Julie on 0114 222 2690.

    Many thanks,

    Peter Bath and Julie Ellis

    Attachment 383

  2. #2
    MND Association Digital Media Manager
    Join Date
    Jun 2011
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    Hello everyone,

    We are writing to ask if you can help us with our research. We would like to talk with people about how they share information and benefit from using the MND Association forum, particularly how they discuss with others living with MND who they meet in the forum.

    We are inviting people aged 18+ to take part in an interview, which is like an informal chat. If you take part we’ll ask you things such as:

    - How did you find out about the forums?
    - When and why did you first start using them?
    - What do you post on the forum about yourself with others?
    - What does it mean to you to have access to the forum?
    - How do you get to know and trust others you meet in the forums?

    All the interviews are confidential and you don’t have to be someone that posts lots of messages on the forum to take part. We are looking for a variety of people to chat with – so if you use the forum in any way and think you can help us please get in touch by emailing Julie at: julie.ellis@sheffield.ac.uk or by phone on 0114 222 2690.

    The interview can happen in different ways to suit your own circumstances and what you would prefer – we could discuss it over email or in a face-to-face meeting, whichever is better for you.

    We realise that you may have questions you would like to ask before you agree to take part. That’s fine. If you get in touch, we can send you further information about the study and what’s involved.

    Finally, we’d like to say a big thank you if you have already been in touch about taking part!

    Thank you everyone

    Julie and Peter, from the Information School, University of Sheffield http://www.sheffield.ac.uk/is

  3. #3
    Forum Member
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    Hello all

    Julie Ellis called here about two weeks ago to interview me about my participation on the forum

    I found it to be a very enjoyable experience, hampered for me somewhat because I had to tap out all my replies! I hadn't typed as much for ages!

    But, nevertheless, a most worthwhile cause and I urge you all to volunteer your services

    Much love


    Joycie xx

  4. #4
    Forum Member Dude's Avatar
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    Joycie How long did it take. My arms get tired v quickly, maybe Icould have a few bites at it . Dude x

  5. #5
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    She was here most of the afternoon, dude, but she takes her time and I didn't find it tiring - in fact, the time just flew and it was very interesting. I cannot speak at all so I tapped things out on my IPAD. Before she came, I had typed her out a report which she took with her. But of course I had peter as interpreter! Please do think about doing it - it is very worthwhile! Love Joycie x

  6. #6
    MND Association Digital Media Manager
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    Hi all,

    Peter and Julie has asked me to say thank you to everyone one in the MND Association Forum community who has offered to take part in this research. Thanks to the generosity of the community they now have enough volunteers to take part in their study. They would like to offer their best wishes and thanks to you all.

    Thanks Claire

  7. #7
    Forum Member Barry52's Avatar
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    Julie is coming to see me on 20th of August.
    I’m going to do this even if it kills me!

  8. #8
    Forum Member Dude's Avatar
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    Great Barry, by the way did I mention it's my birthday tomorrow, I'm 67. I'll have a brew now.

  9. #9
    Forum Member lorret's Avatar
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    Happy birthday Dude for tomorrow, just on my way to get Tom from airport . Bit busy tomorrow. Lorret

  10. #10
    Forum Member Dude's Avatar
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    Thank you kindly ma'am. Where's Tom been to. Dude.

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