They can be difficult to sustain, but support groups are an important part of treating respiratory disease.
Breath Catchers meets at Fairview Southdale Hospital in Minneapolis.
Only 10 minutes until starting time. One by one, occasionally two by two, they file in, most carrying oxygen, most chronic obstructive pulmonary disease (COPD) patients. The empty-handed ones are generally caregivers. Breath Catchers, a respiratory support group meeting, is gathering at Fairview Southdale Hospital, Minneapolis.
Today, the group has a speaker, a man in his 50s named Kip, who has alpha-1-antitrypsin deficiency and who recently underwent a bilateral lung transplant. Kip is only 120 days out of surgery. The group members hang on his every word. Unfortunately, most are too old to be considered for their own transplant, but Kips story gives them hope, nonetheless. They talk about attitude.
Benefits of Support Groups
According to the Australian Lung Foundation, between 40% and 90% of COPD patients suffer from depression, compared with 8% to 20% among the overall population.1 Such psychological disturbance can lead those with COPD to withdraw from life, becoming more socially and physically inactive, which in turn heightens psychological symptoms, and a vicious cycle appears, the study notes.
Respiratory support groups offer these patients the opportunity to discuss and share their emotions, to get out of the house, and to modify the way they think about their disease. The random controlled trial conducted by the Australian Lung Foundation showed that small group rehabilitation followed by support group therapy significantly reduced psychiatric morbidity in COPD patients.
The study further showed that although rehabilitation improved health status, the benefits began to wane 6 to 12 months following intervention and returned to baseline by the end of 1 year. Patients in the study who received psychosocial support and the educational component of rehabilitation, however, showed greater improvement. The study concludes that implementing patient support groups following rehabilitation is vital in sustaining improvements and reducing health care usage in respiratory patients.
In addition to psychosocial benefits, support groups allow patients the opportunity to reinforce and practice self-monitoring procedures, relaxation techniques, and diaphragmatic breathing. At Fairview Southdale, members of Breath Catchers use an oximeter to measure their SpO2 and pulse rate during each meeting.
Support groups also provide patients with an opportunity to rehearse and review learned material. The Australian Lung Foundation study showed that 81% of patients in its COPD sample exhibited some type of cognitive deficit: 33% showed visual short-term memory impairment, while 44% showed verbal short-term memory impairment.
Whats important about support groups is that you hear about someone with a problem and say, I guess mine isnt so bad, and you feel a little better, says one Breath Catchers member. Another offers that you hear a lot about what you can expect, so if something happens, it doesnt throw you. All agree that they receive good practical information when attending the meeting.
They also believe a good support group is nonjudgmental and positive, and offers information about new technologies and treatments. Members should be willing to share, be able to laugh or cry, and offer empathy, support and acceptance to every member.
Starting a Group
The American Lung Associations state associations have a large network of respiratory support groups called Better Breathers Clubs. Indiana has 23 such groups with a total of 800 members throughout the state. According to Bill Wilson, community relations director for the American Lung Association of Indiana, as many as 40 to 50 people attend some of Indianas Better Breathers Club meetings.
Most of Indianas facilitators are RCPs or CRTs. A few are pharmacists. It takes a special person to run these groups, Wilson says. They need patience and dedication. Facilitators are volunteers. To recruit and advertise meetings, the Indiana association has facilitators schedule meetings a year in advance. The schedule is then mailed to patient lists and staff members are encouraged to talk up the Better Breathers Club meetings during patient treatment and rehabilitation sessions.
While the American Lung Associations national headquarters has never been involved in organizing and supporting state lung associations in the creation and running of the Better Breathers Club network, the national office collects data on the number of members in each state. In 2001, the latest figures available, more than 38,000 people attended Better Breathers Club meetings nationwide. Texas, Florida, and California lead the nation with 10,000, 5,251, and 5,108, respectively.
According to literature put out by the Indiana association, volunteer facilitators spend 2 to 3 hours per month scheduling speakers, securing meeting locations, and providing leadership at the meetings (meetings are held every other month). Facilitators are also given a list of 45 suggested topics for speakers, including Coping with Chronic Illness and Stress, Energy Conservation, and Quick and Nutritious Meals. Nationwide, the first Better Breathers Club was started more than 25 years ago.
Fairview Southdale has been running its Breath Catchers meetings uninterrupted since 1989. Karen Post, CRTT, started the first meeting following the hospitals first rehabilitation class when she asked the graduates to return for a follow-up session. I had a doctor come and speak, so the patients could talk one-on-one with a pulmonologist, she says. That core group just kept coming back.
She and her patients decided to run the group on a monthly basis and initially had a professional speak at every meeting. After awhile, Post says she realized members like to talk about their doctors, as well as their new medications and treatments, and that having a professional speak at each meeting was not necessary. In fact, she says, a theme can backfire if a patient is not that interested in the topic.
Posts advice for people considering forming such a group is to just get started. Theres not a lot of preparation, she says. Keep it regular. Keep it upbeat. And be accessible, ready to answer the many questions group members undoubtedly will have.
Sustaining a Group
Sustaining a respiratory support group can be a challenge because of the nature and progression of respiratory diseases. Part of Fairview Southdales success is due to the groups consistency, says Mary Pat Ruff, RRT/RCP, the current facilitator of Breath Catchers. We keep the location and time the same, she says. I also send out a newsletter to let them know about upcoming meetings. Some of the people attending Breath Catchers have been coming for 10 years. Ruff attributes the groups longevity to keeping the meeting content fresh and varying the topics.
People also want to be acknowledged. A good facilitator lets each member know how important he or she is to the group. If a facilitator is not careful, a meeting can turn into a complaint session. When that happens, the facilitators job is to guide members into more positive terrain.
For some remote communities, patient associations, hospitals, and facilitators may not be accessible, in which case, patients may choose to set up their own support group. The challenge here, according to Ruff and others, is to keep the meetings positive.
Sometimes the most important support is offered member to member outside of the meetings. Camaraderie develops, and group members start checking on one another and motivating each other.
Indianas Wilson believes that the sustainability of a group will hinge on whether the facilitator or the organization running the meeting obtained enough information from incoming members regarding their needs. The American Lung Association of Indiana finds out the needs of incoming group members and caters to those needs, Wilson says. He adds that 60% of people that originally join stay and attend every meeting as long as their health holds out.
Limited access to transportation as well as poor physical and mental health can hurt attendance. Wilson says respiratory patients often think they are a burden to society, their families, and their friends, so we say to them: Youre not a burden. Come and hang with this group.
Numerous support groups for those with respiratory diseases, including asthma, cancer, cystic fibrosis, and COPD, exist nationwide and continue to be established. A good resource to help find support groups for various respiratory diseases is the American Self-Help Group Clearing House at http://www.mentalhelp.net/selfhelp/.
Fran Howard is a contributing writer for RT.
1. The Australian Lung Foundation, 2002. Available at: www.lungnet.org.au/Frames/frame_patient-support.htm.