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Lymphedema Ethnodramas


The ethodrama has a web site, and they ask for feedback:

We are pleased to announce the launch of a youtube video of a theatrical presentation concerning breast cancer survivorship.The video is a result of our CIHR-funded Dissemination to Intervention project uses theatrical performance (ethnodrama) to disseminate results on the psychosocial effects of lymphedema, the condition that arise from breast cancer surgery. The aim of the project is to change attitudes and practices of survivors and providers regarding their self-education, screening and referral patterns. The ethnodrama, developed by survivors and professional scriptwriters, is now being performed in several Canadian locations for audiences of breast cancer survivors and health care providers. Using surveys and follow-up interviews with audience members, the project explores the impact of the performance on the knowledge, attitudes and practices of the audience members regarding lymphedema

"The New Normal": Living with Lymphedema after Breast Cancer is a performance that addresses arm morbidity among breast cancer survivors.

By using interactive ethnodrama as both a knowledge translation strategy and as a psycho-social intervention, our study 1) extends the application of ethnodrama as a knowledge translation strategy to the domain of arm morbidity, and 2) provides a solid foundation for the development of new forms of psychosocial interventions for breast cancer survivors.

There are a series of five (5) videos, all of which can be reached from this link: Lymphedema Ethnodramas.

Some comments from lymphedema patients on these videos:

Nitocris states:

Yes, the mood of these videos is not a happy one.  It just reflects how deeply LE affects our lives. But, as one lady said this has been an experience of loss but also of doors opening.  many doors remain to be opened.

Binney states:

What I didn't like AT ALL was the section where they're all "dumping" the things they love and walking away. I have lost a great deal to LE, but I refuse to walk away like that. I still struggle to fit in what I can of the things I've lost, and to make positive adjustments where I just can't make something work. I resent having it presented that way and dreading that some of our newbie Sisters of Swell will see that and find the losses overwhelming, or give up and not even try to take back their lives. I wanted to shout at them, "Wait a minute! Don't toss that away! C'mon, let's talk about how you can make that work!"

Tina states:

As far as freaking out newbies, I would have been glad in some way to have known the reality or possible worst case scenario (because when you are in crisis mode you often do have to temporarily let go of those things) in order to manage my expectations. For me it was overwhelming to continue to recognize new "cant’s" without any warning. That's what I found so depressing. However, I do agree the interviews showed how the women had grown and were no longer purely in the hopeless stage and learned how to cope.

Jane states:

While I was very moved emotionally watching these videos and wondered if they were too much of a "downer," I decide that they are real, our reality as breast cancer survivors with lymphedema, and as such, they would be a help for those coping with these same problems.

Kira states:

I think these videos are valuable to watch.  I loved the empty coat on the hanger representing the doctor.  I could almost see my tennis racket going into the box.

LtotheK states:

I didn't realize lymphedema can make one feel like she has a permanent flu. There is so much insidious dark stuff around this disease I'm even still learning about.

I think it is a "downer", but early activism often is. Rage is the first part of the process. We are at a historical moment of women speaking up and out, things will get better with time. In the meantime, I'm so thrilled women are willing to help educate about the realities. There are far too many.

Ginger48 states:

I watched it and also thought it was depressing but I could also relate to some of what they were saying. Having to always advocate for yourself and educate others including medical personnel can be exhausting. I do have that feeling right now that I just want all of this to go away so I can get on with my life!

Cookiegal states:

So I watched the first half....and it was nice to see them put it out there....but yeah it was a little depressing too...but still glad they did it.

I so related to putting the paddle in. I turned down a "bucket list" trip this weekend because I am now afraid to paddle. It was kind of hard core but still.

This sounds ridiculous...but I wished they could have been wearing something else.....besides the sleeves of course. Something about the tshirts depressed me.

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Page Last Modified 11/14/2012