Starting and Running a Pulmonary Support Group
by Jane M. Martin
In September of 2003, I was a guest speaker at the National Black Lung Coalition & Respiratory Disease Clinics Annual Conference in Pittsburgh , Pennsylvania . There, I talked about how to start and run a lung support group. Here is a summary of what I shared with that group of pulmonary health care professionals and people affected by Black Lung Disease.
The Better Breathers' Club, or whatever you choose to call it, is a very important part of education and support for people with Chronic Lung Disease and their families. If you do not have one in your area, I encourage you to consider starting one.
I have facilitated our Better Breathers' Club for 16 years. They are not all called Better Breathers' Clubs, although it is a common name. You can call it whatever the people in your group would like. And it is important that they decide, because it is their group. Here are some ideas about how you can get started and some very information I have learned in my time as a BBC facilitator.
First of all, you can't do it all yourself. You need to have some kind of support for the following: a room in which to hold meetings, light refreshments, some way to copy materials, and ideally, funds for a few educational supplies. You should also have a helper for you at meetings, or to be there if you are unable. If you're having trouble getting support from the administration at your local hospital or clinic -- if they say that it is not important -- find someone who believes it is! We asked our hospital for some time to get permission to start a group. One day, an Asthma and Allergy doctor wrote a letter to our local hospital administration saying how important it was for people with pulmonary disease to have education and support. We were asked by our administration to start meetings the next month!
You can also check with the American Lung Association if they will help you get started. Go to their website at www.lungusa.org. There you can find a listing of Better Breathers' Clubs throughout the USA . Some of the information may be out-of-date, so call before venturing out to a meeting.
A Pulmonary Support Group for adults with chronic lung disease and their family members or friends. It meets regularly, usually once a month.
For the participants, it is:
- A place where members can learn about all aspects of living with pulmonary disease
- Free of charge and does not require a physician's order.
- Takes less time and commitment than a pulmonary rehabilitation program, and is especially valuable to people who do not have pulmonary rehab in their area.
- Friends and family members are welcome to actively participate.
- A way to gather on an informal basis. For those who have been isolated for a long time or are hesitant to become involved in a group situation, it is a good start. They can just show up and listen, and they don't have to interact with anybody if they don't want to.
- Sometimes the only place some people can cough, or wear their oxygen without feeling self-conscious about it.
If you do not have logistic and financial support from your local hospital or clinic, check with the oxygen providers in your area. They might be willing to provide a space, advertising, and refreshments. Also, check with your pharmaceutical company representatives about providing educational materials, and some refreshments. Boehringer / Ingleheim (the makers of Spiriva, Combivent, and Atrovent) has a very nice package with videos and written information for patients.
Getting the Word Out
Create a flier, telling people about your group. Post fliers around town, in doctor's offices, public health clinics, and any other place you think potential members might find them. See if respiratory therapists can hand them out to their patients who are in the hospital and the emergency room for trouble breathing. Those are the people who need it!
If your hospital or clinic has a health promotion department, ask them for help. They might be able to develop the fliers and mail them out. Notify your local newspaper and radio station. The publicity is free, if they can fit you in. Be willing to do a radio interview at you hometown station. It can actually be a lot of fun!
Where and When?
Options on where to meet vary. Some places to have meetings are in a hospital or clinic meeting room, local library, restaurant, community building, school, etc. The location must be relatively easy to find and easy for people to get into. Your members cannot tolerate long walks or even just a few stairs, especially in cold or humid air.
Serve something to drink -- coffee, tea, water. Members might be willing to take turns bringing a snack, or if you have a sponsor, they can usually bring something to eat. Some are even able to provide lunch. As far as seating goes, it is more comfortable for your members, if at all possible, to sit at tables, rather than chairs lined up in rows. The upper arm support makes breathing much easier.
Although there are successful pulmonary support groups run by non-medical people (patients or family members), having a respiratory therapist or a nurse with experience working with pulmonary patients is ideal. Most important, though, is to have somebody there to greet people with a smile, show them respect, and give them time. The people running the group have to be good listeners. Many times the people who come to lung support groups are confused and lonely and becoming part of a group can be a healing experience. And for some of them, this might be the only social situation they have.
Speakers and Topics - Here are some suggested topics and speakers for your meetings:
Your lungs and how they work - Pulmonary doctor
Medications - inhaler techniques using placebos - pharmacist, respiratory therapist
Relaxation - Physical therapist or occupational therapist
Exercise - Physical therapist or exercise physiologist
Breathing Techniques - respiratory therapist or respiratory nurse
Helpful Tips - pulmonary patients who have solved everyday problems
Nutrition - dietician -- but make sure that your speaker understands special pulmonary needs.not necessarily the traditional low-fat, low cholesterol diet!
Coping with the loss of former activities - medical social worker or psychologist
Oxygen - oxygen company salesperson or home care worker
Sleep apnea - sleep lab technician or pulmonary doctor
Read respiratory newsletters, taking note of people who are out there willing to come and speak to your group. The possibilities are endless!
End your year with a celebration, such as a potluck, maybe with some musical entertainment from a local school or church group. The most important thing of all is for your members to get together, learn from and support each other, and know they're not alone!
© 2005 Jane M. Martin, BA, CRT . www.breathingbetterlivingwell.com
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