Spouses/Partners of Women with Breast Cancer Related Lymphedema.

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faithandfifty
faithandfifty Member Posts: 10,007
edited June 2014 in Lymphedema

****I just cut/paste this from a thread here at BCO under the 'interview' category:  

Study Announcement

Recruitment of Volunteers   The spouses/partners of women who have been diagnosed with breast cancer-related lymphedema are invited to participate in a study. The purpose of this study is to help better understand health information use, health care decision making related to breast cancer-related lymphedema, the impact of breast cancer-related lymphedema on couples' sexual relationship, and potential changes in perceived family or relationship quality of life.Volunteers will participate in an informal interview over the telephone with an interviewer. The interview may last up to 90 minutes. This study has been approved by the Miami University Institutional Review Board: 10-133.If you would like to participate in this opportunity, please contact one of the Principal Investigator:Dr. Elise Radina, CFLE(513) 529-3639 radiname@muohio.eduMiami University
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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited January 2011

    Seems like more people would likely find it here.

    Pile on.

    Keep this near the top, till they have enough participants!!!

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  • CherylG711
    CherylG711 Member Posts: 102
    edited January 2011

    I just emailed the informatin to my husband....I hope he will participate in the study....we had some real issues after the lymphedema diagnosis.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2011

    Faith, thank you!

    Very significant subject, and Elise Radina is one of our real Research Heroes, for sure. I love the interviews, because they give you the opportunity to really explain what you're dealing with. Cheryl, tell your DH to make notes about all the things he wants to say, because this is really his chance to be heard.Cool

    Several years ago Dr. Radina led an interview study of women with LE, and it was such an eye-opener for the professionals, and really brought a lot of attention to the subject. What surprised the professionals (and will not surprise anyone here for a momentTongue out) was her finding that, besides the distress, disfigurement, and disability that comes with this diagnosis, one of the hardest things we have to deal with is "feelings of abandonment by the medical professionals."

    Yes, well...like I say: surprise, surprise!Undecided

    Anyhow, the things she discovers with these interviews are fairly presented, wide-ranging, surprising -- and LISTENED TO!

    So, please -- DO THIS THING!Kiss

    Be well!
    Binney

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  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    I just emailed it to my husband as well: it would be so good for him to talk about it--I'll keep bugging him. I emailed and volunteered to do the study--I was so excited, and then read that it is partners...

     I want to talk about the impact on ME!

    Kira

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  • faithandfifty
    faithandfifty Member Posts: 10,007
    edited January 2011

    So grateful to hear the behind-the-scenes story, Binney.

    I had so hoped that this was "for real" and would be 'genuine.'

    I sure hope that everyone's spouse/partner take advantage of this rare opportunity and weigh in with the reality, the heart-break, the set-backs.

    Thanks again so much for your insight, Binney.

    xx00xx00xx00xx

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2011

    LOL, Kira!! Tongue out

    My husband said "yes". I just emailed Dr. Radina and said we are willing to participate. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2011

    FYI Dr. Radina reassured me that the research assistants are able to coordinate a time that works best for your husband, such as evenings or during the weekend. She sounded very nice in her emails. So proud of my husband for doing this!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2011

    Tina, tell him we're all proud and grateful. My DH agreed as well -- surprised me, since he's a man of few words, and the threat of a possible 90-minute interview is daunting to say the least.

    So, hey! Thanks, guys!Cool
    Binney

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2011

    Tina, tell him we're all proud and grateful.Smile My DH agreed as well -- surprised me, since he's a man of few words, and the threat of a possible 90-minute interview is daunting to say the least.

    So, hey! Thanks, guys!Cool
    Binney

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  • kira66715
    kira66715 Member Posts: 4,681
    edited January 2011

    Binney, my DH agreed today as well! He was worried about the 90 minutes, but I twisted his arm, and used his email to sign him up, and I think he kind of is looking forward to it. Elise Radina emailed him back instantly--she's down right amazing.

    Kira

    Edited to say: he's gathering material: I just declined to join him on a walk with the dog--it's freezing out there--and he said "I'll be sure to mention this to the researcher...."

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  • NatsFan
    NatsFan Member Posts: 3,745
    edited February 2011

    My dh had his interview today and said it was only about 40 minutes.  He said it was interesting to do and was glad to do whatever he could to advance knowledge of LE.  He said one of the questions was something about what'd he'd like to see being done differently. His answer: Get doctors and surgeons educated about LE so they can help patients who are at risk and who get it.

    Wow, I guess he really was listening to all my rants!  Tongue out 

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited February 2011

    Cheering for your DH!

    Dawn 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    My DH still hasn't been called for the interview, even though I gave her his cell phone number when I first posted about this. Did your husbands get called right away? 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited February 2011

    Tina, my husband was emailed, and then his student called yesterday at the time they'd set up and mentioned that she was upset about something, and just didn't feel like interviewing him yesterday!

    I think I'll let Dr. Radina know--she should know that the students are behaving in a way that makes it hard to get these guys, who are very brave to even volunteer, to participate.

    I'd suggest an email to Dr. Radina.

    Kira

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2011

    Thanks, Kira. Will definitely send Dr. Radina an email and confirm they have the correct cell phone number.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2011

    My husband was finally called and took the survey this past weekend. He said it lasted 45 minutes. He shared about everything - my husband is pretty gabby for a guy! I thanked him for taking the time to help. I sure love that man!

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