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Tag: Support Groups

Let Patients Lead – Explaining Addiction and Recovery to Families

By HANS DUVEFELT, MD

We knew that the most powerful way to provide substance abuse treatment is in a group setting. Group members can offer support to each other and call out each other’s self deceptions and public excuses, oftentimes more effectively than the clinicians. They share stories and insights, car rides and job leads, and they form a community that stays connected between sessions.

Participants with more experience and life skills may say things in group that we clinicians might hesitate saying, like “Now you’re whining” and “Time to put on your big boy pants”. They can become role models by being further along in their recovery and by at the same time revealing their own fear or respect for the threat of relapse.

What has also happened in our clinic, entirely unplanned, was that after an informational meeting where we explained the group model and had a national expert physician speak about opioid recovery, several parents raised their hand and said there should be a group for families, too.

We listened and within a few months we started such a group and now, a year and a half into it, the group is co-led by a few of our patients, who naturally had become leaders of the patient group earlier.

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Our Cancer Support Group On Facebook Is Trapped

Our Experience on Facebook Offers Important Insight Into Mark Zuckerberg’s Future Vision For Meaningful Groups

By ANDREA DOWNING

Seven years ago, I was utterly alone and seeking support as I navigated a scary health experience. I had a secret: I was struggling with the prospect of making life-changing decisions after testing positive for a BRCA mutation. I am a Previvor. This was an isolating and difficult experience, but it turned out that I wasn’t alone. I searched online for others like me, and was incredibly thankful that I found a caring community of women who could help me through the painful decisions that I faced.

As I found these women through a Closed Facebook Group, I began to understand that we had a shared identity. I began to find a voice, and understand how my own story fit into a bigger picture in health care and research. Over time, this incredible support group became an important part of my own healing process.

This group was founded by my friends Karen and Teri, and has a truly incredible story. With support from my friends in this group of other cancer previvors and survivors I have found ways to face the decisions and fear that I needed to work through.

Facebook recently had a summit to share that groups are at the heart of their future. We had a summit of our own with some of the amazing leaders within the broader cancer community on social media.

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The Legacy of the Tarceva Diva

About three years ago, a new member of our Lung Cancer Survivors Support Community posted a message: she was taking Tarceva and wanted to discuss with fellow members everything about that cancer drug.

She titled her post, TARCEVA DIVAS AND DUDES DISCUSSION & SUPPORT. She saw a need to create a community within a community, and beginning with that modest post, she did it. She didn’t ask permission. She didn’t wait for us, or another member, to organize and lead a top-down discussion about Tarceva.

The ongoing discussion string became the place for our members to go to talk about Tarceva and next-generation lung cancer treatments.

The member became known by some as the Tarceva Diva, and for the purposes of this story, that’s what I’ll call her. This story is not specifically about Tarceva, or even about lung cancer, but instead, it’s a celebration of  an unsung hero who helped thousands of people.

There have been well over 8,000 posts in less than three years’ time–about 250 posts per month–in just that series of hundreds of “Divas and Dudes” discussion strings. That’s a constant, dedicated stream of treatment insights from-the-front-lines of people worldwide affected directly by lung cancer.

“WELCOME TO TARCEVALAND!!!” she’d proclaim to a new member, or “newbie.” She could insert humor into the discussions without making light of the seriousness of members’ illnesses. The activity in the Tarceva sub-community grew so quickly that the Tarceva Diva created another discussion topic, TARCEVA SIDE EFFECT BUSTERS, which created yet another resource for members.

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