Finding a support system helps to make living with a chronic lung disease a bit easier. The American Lung Association's Better Breathers Clubs (BBC) bring together individuals with chronic obstructive pulmonary disease (COPD), lung cancer, interstitial pulmonary fibrosis (IPF) and other lung disease to talk about managing their symptoms through everyday life. Led by trained facilitators, these in-person adult supports groups are located in communities across the country to help those living with a lung disease live life to the fullest.
Sandy Kistner is a registered respiratory therapist at the New Ulm Medical Center, and for five years she's been a BBC facilitator in New Ulm, Minnesota. We asked her some questions about what it's like leading these support groups and what she enjoys most.
How did you hear about the Better Breathers Club and why did you want to get involved?
I heard about the group from Cheryl Sasse at the American Lung Association in Saint Paul, Minnesota. The American Lung Association was a great resource and support during the development of the Better Breathers Club in New Ulm and has continued to be so for the past five years.
What kind of training and qualifications does it take to become a BBC facilitator?
The Lung Association made it very simple. There was an online course for me as the facilitator and a few signatures on some paperwork for my upper management. The only specific requirement for the facilitator is that you are smokefree for at least 12 months prior to the application and continue to be smokefree throughout your affiliation with the American Lung Association.
What kinds of things do you do at BBC meetings and how often do you meet with the club?
My group participants usually start coming 20 to 30 minutes before the advertised start time. During this time, I try to answer any concerns and ask them for future topic ideas. After signing in and picking up handouts, water, coffee and a snack, we typically start with the speaker. We have a casual meeting, which allows the participants the opportunity to ask questions throughout and after the lecture. I end each meeting with the newest research or medical breakthroughs, which may include new medications or treatment recommendations for COPD or IPF patients. We then talk about topics that I have heard from them and decide what other speakers I should invite to upcoming sessions.
Our group meets every other month, or six times per year. Their favorite speakers include: acupuncturist, pharmacist, dietician, occupational or physical therapist, respiratory therapist and physician. I also invite sales reps to show the group equipment that may benefit them at home. Our April speaker will be demonstrating high frequency oscillating vest therapy.
Who comes to BBC meetings and how do you build a rapport with them?
I have met about 75 percent of these patients in pulmonary rehabilitation, so I use this group as an opportunity to see them face to face and attempt to keep them motivated to continue daily exercise, within their limitation. The Lung Association helps publicize the meeting in the local newspaper and on Lung.org, so we often get community members that have questions or concerns about their lung health. Some of those patients have gone on to attended pulmonary rehab, so BBC has also been a referral source for our nationally certified pulmonary rehab program in New Ulm. Trust is built over time, but as they get to know me, and I them, they understand that I will always be honest with them.
As a BBC facilitator, what's your main goal of every meeting?
I hope to make all that attend feel valued and comfortable in asking or sharing their lung issues in the group.
What do you want club members to take away?
I want them to gain one nugget of information that they can apply to their personal lifestyle to improve their quality of life. We do a post-lecture evaluation, and this information helps me understand if the topic we discussed was applicable to most participants. Their feedback is honest and makes our program the best it can be.
What's the greatest challenge of being a BBC facilitator?
Finding topics that teach something new or teach it in a new interesting format can be a challenge. For example, a basic review of how the lungs work is great, and necessary, but it is often tricky to expand on long-term members' knowledge base without leaving the newer participants behind.
What's the greatest reward?
It's wonderful to witness how empowered the patient's become after applying the education from BBC to their personal lifestyles to improve their quality of life.
How has being a BBC facilitator influenced your own life?
I love helping people learn to help themselves. Knowledge is power, and even a small change can make a big impact in the life of someone with lung disease. Many long-term participants feel like family.
Learn more about BBC and find one near you at Lung.org.
