With the significant scientific advances in the disease, lung cancer can now be managed as a chronic illness. Despite that, this diagnosis can still turn your life upside down, with potential changes in your employment, insurance, personal finances, and a multitude of other issues. There are very few lung cancer support groups available to assist patients in navigating these significant life changes, with most focusing on those undergoing treatment or those in hospice. However, it is possible to be your own advocate to launch a support group that meets your needs.
Michelle Hills, a lung cancer survivor, and Sarah Bechard, a social work case manager at the University of Kansas Cancer Center, started their own support group in Kansas. Check out their how-to guide to find out how to start your own support group.
Do some research on support groups
Learn from other support groups: Reach out to a lung cancer support group facilitator in another city. Many organizations, such as LUNGevity, can direct you to other groups to learn how their group is structured and lessons learned from their experiences.
Compile what you learned: Write a summary of what you learned to make the “sales pitch” to the cancer clinic. It shows you did your homework and you are ready to take responsibility for the new group.
Develop the framework
Establish a goal: Think about what you would like to accomplish. For our group, the goals are to teach fellow survivors how to live day-to-day with lung cancer as a chronic disease, empower each other to have more directive conversations with our oncologists, and support one another through scans, treatment, and uncertainty.
Determine timing and frequency: Establish how often you envision the group meeting and how long the meeting will last. Our group meets once a month as that is the community norm for other cancer support groups.
Develop the format: Determine how you would like a typical session to go. In my group, we started with 60 minutes and extended to 90 minutes as the group expanded. The first 30 minutes are welcome and introductions, the next 30-40 minutes are used for an expert guest speaker, and the final 10-15 minutes are for a Q &A.
Get others on board
Find an internal champion: This is someone who you feel the most comfortable with on the medical team; it could be a social worker, nurse, pharmacist or onco-psychologist. Having buy-in for this person is very important in terms of navigating internal logistics and helping to find a staff member who is willing to serve as the facilitator.
Find a lung cancer buddy: Ask your internal champion for a potential referral to a fellow warrior. You can also reach out to local and national organizations like LUNGevity. The odds are good that these organizations are fielding phone calls from other patients looking for support. The role of your buddy is to help brainstorm ideas on what would be most helpful from a support group. Bonus: you now have a support group because you can start with two people.
Line up some guest speakers: Guest speakers can serve a critical role in structuring the support group, providing information on topics such as exercise, nutrition, managing side effects are all of interest and not controversial. Topics such as using essential oils, acupuncture, and other complementary practices will also be of interest. It’s good to have these lined up to help the first few sessions go smoothly and attract support seekers.
Work out the logistics
Give yourself time to plan before your first group: Having a successful launch takes time. The more you can plan in advance, the greater the success. In my group, we started planning in November 2018 and our first group meeting was in February 2019.
Set goals and deadlines: Establish regular contact with your internal champion/facilitator to ensure the project is staying on track. Sarah and I met every 2-3 weeks to ensure we were making progress.
Identify a facilitator: This is someone who will serve as an external point of contact, who can be the same person as the internal champion or could be more than one person, such as a nurse and social worker. The facilitator can also help secure expert guest speakers. Sarah and I serve as co-facilitators.
Identify a meeting space: Choose a space that can be used to meet at the same time and place for each meeting. Consistency helps with retention!
Recruit support seekers
Create marketing materials: A simple flyer will do! This is great for nurses to hand out at appointments and to post on old-fashioned bulletin boards. No need to reinvent the wheel.
Craft an outreach strategy: You can see how other disease-states, like breast cancer, approach their outreach and shamelessly copy their strategy. For example, include a feature on your new group in a prominent newsletter featuring other support services. Reach out to local and national organizations like LUNGevity to have the group published on their websites.
Inform others on the medical team: Start talking to your medical team about the group. Get them excited and keep them informed of your efforts during your own appointments. The clinic registration staff is also an excellent place to start. Everyone has to schedule their appointments, so the registration staff can also do some education and outreach while interacting with future members.
Tips for your first group
1. Invite a few "seat fillers" to get the group going. For our first gruop, we invited the American Lung Association to come. It was three people in total.
2. Create a sign in sheet for the facilitator to collect names and contact information.
3. Begin the session with the facilitator reviewing the goals and structure and establishing the ground rules and expectations for the group for confidentiality, respect and acceptance of all members.
4. Reach out to organizations like LUNGevity and the GO2 Foundation for materials that can be used as hand-outs. Prowl around the patient education section of your cancer clinic and see what they have. American Lung Association put together a “goodie bag” for us to give to support seekers.
5. Get feedback from the attendees after the first visit in order to find out what worked, what didn’t, and what their particular interests are.
6. If you have a guest speaker, write a personal thank you note for donating their time and perhaps include a gift card. This both shows your appreciation and helps ensure future guest speakers.
Final thoughts from Michelle: I have to say the stars aligned perfectly on this as I was a LCSW & health care executive and my lung buddy happened to be a licensed clinical psychologist. While that was obviously helpful, I think the most important thing you need is confidence. You’re going to need to be determined to do this. We call it “grit with grace.” The pay-off is worth it, though. We started small, with only two patients who showed on a frigid Friday morning, with icy roads from a snow storm the previous day. We’re now up to 8-9 members a meeting. Like they say, if you build it, they will come.
Final thoughts from Sarah: I personally got into this field because I want to help people. When you learn there is a large group of people who need help, you jump at it. In general, I think there are a lot of people out there that do want to help and contribute, but they don’t know who needs it or where to contribute. Sometimes, all you need to do is ask and people will jump at it. The worst they can do is say no. So ask for the support group, ask for a guest speaker, ask for materials—just ask.
Anyone can start a lung cancer peer support group. If you do not have facilitator or champion within a hospital system, you can start a group at your church, recreation centers or in donated conference space. If you are interested in starting your own group and need some guidance, you can reach out to support@lungevity.org.