Posted in #BCSM, #HCSM, Community Manager, Patient Communities

The challenge of fitting in: A study of Norwegian breast cancer online self-help group

Online self-help groups multiply peoples’ possibilities to exchange information and social support. Such possibilities are expected to be of crucial value for the ‘new’ healthcare user. However, similar to experiences from face-to-face based groups, studies of online self-help groups report high drop-out rates. Knowledge about why this happens is scarce. By means of qualitative interviews and participant observation, this article examines non-participation and withdrawal from an online self-help group for Norwegian breast cancer patients. Five conditions are identified as barriers to use; a need to avoid painful details about cancer, not being ‘ill enough’ to participate, the challenge of establishing a legitimate position in the group, the organisation of everyday life and illness phases that did not motivate for self-help group participation. I suggest that an adoption of the biomedical explanation model represents an important background for this pattern, an argument which contrasts prominent assumptions about the new healthcare user who does not accept the biomedical ‘restitution story’ in her efforts to make sense of an illness. A further suggestion is that experiences of self-help groups as arenas for successful coping need to be further considered as a barrier to use.

See on onlinelibrary.wiley.com

Posted in #BCSM, #HCSM

Blogging and the experience of cancer survivorship

Blogs bring about a sense of community.  In the greater online health community, blogs make you feel like you’re not alone, that someone else understands what you are going through ~ Wego Health

I was 34 years of age when I hit was hit with a juggernaut – the metaphorical juggernaut of the words “you’ve got cancer”. I went through nine months of treatment for my disease and I coped remarkably well with this period, but it was when my cancer treatment finally ended that the full impact of what had happened hit me.

There is an expectation that when you walk out of hospital on your final day of treatment, your cancer story has ended; but the reality is that in many ways your story is only just beginning. The apparent randomness of a cancer diagnosis shakes your sense of identity to its very core and afterwards nothing will ever feel certain again. Friends and family may find it hard to comprehend why you are sad or depressed.  Understandably your loved ones want you to put your cancer behind you, to get on with your life and move forward, but it isn’t so easy. Fellow cancer survivors do understand though, and in my search to make sense of the experience of cancer and integrate it into my life, it was to these survivors that I needed to turn.

But where to find them? I searched online and while I found many blogs, chat forums and websites with great advice for those newly diagnosed, or going through treatment, I found it harder to access information on how to deal with the post-treatment limbo I found myself in. So I decided to start my own online resource – Journeying Beyond Breast Cancer. I wanted to provide a safe space for cancer survivors to share their experiences of navigating their way beyond their cancer diagnosis.

“One of the most valuable things we can do to heal one another is listen to each other’s stories.” 
Rebecca Falls

When I was first diagnosed with breast cancer, I knew nothing about blogs or online forums. It was only after I finished my treatment and was struggling with the aftermath that I ventured into the blogosphere. I believe that my experience during treatment would have been a lot different and a lot less isolating for me, if I had been able to write about it in a blog. Cancer can be a frightening and lonely experience. Being able to write about it honestly and unsparingly and connect with others is a powerful release mechanism.

Writing for Journeying Beyond Breast Cancer and linking into a community of liked-minded bloggers has been the single most empowering thing that I have done in my journey with cancer.  It has enriched my experience, brought new friendships into my life and expanded my horizons like nothing else. Blogging has taught me so much about myself as a writer, a cancer survivor and a health activist. It has taught me to be more aware and mindful of my everyday experiences, to be more honest and courageous in my communication. But above all else, blogging has connected me to people and places I would never have ordinarily connected to, and given me a sense of community and blogging I don’t think could ever have been possible otherwise.

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Mired in meded – the aha moment about blogging