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Thread: Recording video messages for children

  1. #21
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    Thank you both! Great feedback!

    I'm afraid the camera on my laptop isn't the best quality so will have a play with the settings and move to side by side.

    I will be having a look for the lady you mentioned CC!

    Big thanks again Terry and CC!

  2. #22
    Forum Member Ellie's Avatar
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    Olly, firstly sorry to hear how MND has affected your family.

    I have 2 children in your target group (12, 14) who care for me, but as a protective mum, I have to say I'd be very slow to let them talk to any non-professional about something that could potentially be upsetting. No disrespect to you or your project intended, I'm just being honest!

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

  3. #23
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    Hi Olly

    This woman was also on the Oprah show when she was in the process of making all her videos. The news did a follow up report on her years later. The woman had passed away, but the report was about her daughter who was now a teenager, and living with her Dad.

    She spoke about her Mom’s videos, and how much they were helping her. Her mother went very far with her collection of videos to her daughter, all the way to her daughter becoming a mother herself. A tragically sad story, but what courage, and vision this Mom had to give this gift to her daughter.

    Ellie brings up a good point, many parents would want to protect their younger children. Maybe incorporate how you would be sensitively approaching the subject with children, and how the benefits of having these recordings would outweigh the risks of upsetting young children interested in participating.

    All the best to you, and your family.

    CCxx
    .

  4. #24
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    No disrespect taken Ellie! I appreciate your honesty!

    As CC said, they will be done very sensitively- I'm not intending to cause any upset.

    Olly x

  5. #25
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Olly2015 View Post
    I'm not intending to cause any upset.
    That's what I'm highlighting; you've no idea what remark or question might trigger emotions, no matter how sensitively you conduct the interview. Do you have experience in counselling children?
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #26
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    I have two children in the right age range too, but only because it goes right up to 24! (My children are 18 and 21) However, I don't need care so they definitely don't count at the moment. But as mine was bulbar onset there was no chance to do digital support. I have one very short video on my phone that I am proud of but that is it. I do wish you luck finding the people you need Olly. It seems a really worthwhile project.

  7. #27
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    Quote Originally Posted by Susan View Post
    I have two children in the right age range too, but only because it goes right up to 24! (My children are 18 and 21) However, I don't need care so they definitely don't count at the moment. But as mine was bulbar onset there was no chance to do digital support. I have one very short video on my phone that I am proud of but that is it. I do wish you luck finding the people you need Olly. It seems a really worthwhile project.
    Thank you for your message Susan! I'm glad about your recording, do make sure you have it backed up on a cloud/computer!

    Thanks for your support and wishing you all the best,

    Olly x

  8. #28
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    Quote Originally Posted by Ellie View Post
    That's what I'm highlighting; you've no idea what remark or question might trigger emotions, no matter how sensitively you conduct the interview. Do you have experience in counselling children?
    Hello Ellie,

    You're quite right and I completely understand- I've no idea if a question might trigger emotions, but I am aware that this could happen.

    I have experience with young carers and bereaved children and my supervisors are health care professionals with lots of research experience with children/young people and palliative care.

    It is something that myself and my supervisory team are very conscious about too because of it being such a sensitive topic and so we have made sure that there is a formal plan of action in case needed.

    Sorry about the delay in replying, I've been out of the office for a couple of days,

    Olly x
    Last edited by Olly2015; 16th May 2016 at 18:13. Reason: grammar incorrrect

  9. #29
    Forum Member Ellie's Avatar
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    Thanks for the reply Olly.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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