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Ongoing Group Management
I wanted to start a group from the first time I went to a meeting (which was three months after I was diagnosed), I was afraid I didn’t have enough time with the disease and enough knowledge so I waited for three and a half years. I still don’t feel like I know enough, but extensive knowledge isn’t required!” – Tiffany Gunderman, Support Group Leader, Long Beach, Calif.
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Table of Contents On-Going Management of Your Group ................. 5 Keep Finding More Patients ............................................. 6 Plan Your Year: Create an Annual Agenda ....................... 7 Diversify Your Speakers and Topics................................. 8 Use Your Sign-in Sheet ..................................................... 9 Young Adults at Support Groups ....................................10 Handling Challenging Issues ........................................... 11 Gloomy Gus ...................................................................... 12 In the Face of Loss: Grief and Hope ................................ 14
Congratulations! Whether you’ve had a lot of patients at your first meeting or maybe one or two — you’ve done it! You worked hard to set up the foundation for your group’s future. You can only go up from here. You probably learned a lot, including how to run future meetings better. Here are more tips to help you on your journey as a support group leader.
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After my diagnosis, as I came to realize how much I had benefitted from the work of so many people — fellow patients, caregivers, medical professionals, PHA — I felt a desire to give something back for all I have received and still receive. –Perry Mamigonian, Support Group Leader, Fresno, Calif.
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●●● On-Going Management of Your Group ●●● Whether you’re new to leading a PHA support group or have been running groups for years, there are always new ideas to grow your group and make it run better. This section includes tips from working using your sign-in sheet dealing with challenging participants. We also provide notes from conference calls we’ve organized for support group leaders coping with grief led by PHA Board member Reverend Steve White, who lost his daughter to PH.
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Keep Finding More Patients Maybe you had one other patient at your meeting, maybe you had 10 – you still want to keep the word out about your group meetings and reach out to newly diagnosed patients. Sometimes it takes time to grow your group and for people to find you. Did you experience low turnout at your first meeting? Consider these questions: Did you ask for an RSVP on your flyer? This will help you get a better sense of whether patients are interested. Patients who RSVP may feel more likely to attend since they’ve made a commitment to you over the phone or email. Did you receive many calls in advance of the meeting? You may have received calls from people who wanted more information about the group — maybe they hoped to come or perhaps they told you why they weren’t able to come. Sometimes people are interested in coming but not emotionally ready to attend. Some people need to receive your group postcard reminder repeatedly before they finally decide to take the plunge and show up! Give it some time, they’ll eventually come. Did you place a notice in your local paper? Many local newspapers offer free publicity on their community or health calendars. Contact them for details. Local access TV and cable networks may post your group information for free as well. PHA can help. Visit our website for more tips, www.PHAssociation.org/PHAware. Did you use PHA’s mailing list? PHA will assist you with sending out meeting notices to our patients, caregivers and general members. We can mail out special “Save the Date” postcards to our members in your community at no charge to you. Leaders have told us that this helps double their numbers in attendance. Submit your meeting details with at least 2-3 weeks advance notice using our online form (we will also list your group in our online calendar): www.PHAssociation.org/CalendarForm.
Additional Tip If the meeting was small, try meeting in a smaller, more comfortable and intimate setting, like a coffee shop. A support group can be as small as two patients!
Email other support group leaders and ask for their advice. Find someone who can help you use the Internet if you don’t have access or know-how for publicizing online. Try your newspaper, radio and TV stations for free advertising again. Stick with it, and patients are sure to turn up! “Don’t give up the fight.” – Deloris Peacy, Springdale, Ark. Support Group Leader - 6- | P a g e
Plan Your Year: Create an Annual Agenda Here’s a sample of what you can do for a given year for ideas. Don’t take on more than you can handle; you can adjust the number of meetings during the summer or winter months, as you see fit. The topics, speakers, and sponsors will vary. Month Jan
Mar
Topic Your Ideas for Keeping Warm Caregivers Appreciation (Valentine’s themed) “Meet and Greet”
A caregiver in your group discusses tips or an expert in the community discusses stress Roundtable, no speaker
Apr
Insurance Issues
Doctor or nurse, speaker TBD
May
“Meet and Greet”
Roundtable, no speaker
Jun
Travel and PH
Doctor or nurse, speaker TBD
Jul
“Meet and Greet” Advocacy Talk By Leader Pulmonary Rehabilitation
Roundtable, leader speaks,
“Meet and Greet” + National Updates from PHA Caring Voice Coalition: Financial Assistance
Roundtable, no speaker
Feb
Aug Sep Oct
Speaker Roundtable, no speaker
Local rehab therapist
Brown Bag, No Sponsor Company Y Brown Bag, No Sponsor Specialty Pharmacy or a Home Oxygen Company Brown Bag, No Sponsor PHA Support Group Central Fund Brown Bag, No Sponsor
Caring Voice Coalition staff
Company Y PHA Support Group Central Fund PHA Support Group Central Fund
Nov
Special Awareness Month Celebration:
Local government official speaker
Dec
Holiday Party
Local, notable doctor joins the group in celebration, does Q&A
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Sponsor Brown Bag, No Sponsor Company Y
Diversify Your Speakers and Topics We hear it often among Support Group Leaders — how do we spice up meetings with different speakers and useful information that relates to PH patients’ lives? We’ve compiled a list to help you in your work with running educational, useful and supportive meetings. Ask your nurse, doctor or pharmacist if they can speak on one of these topics or if they can recommend a speaker. Topics Exercise and yoga Pulmonary rehabilitation Depression and stress Diet and nutrition Travel and PH Coping with chronic illness Social Security Insurance and disability Sleep apnea PH and associated conditions Support for caregivers Leaders Sound Off PHA asked leaders on Facebook for specific topic ideas, here’s what they said: Stephanie Layer: “This might not sound like a fun meeting, but we had an attorney speak about estate planning, which everyone should do anyway even if you are not sick. It is a comforting feeling… when you know you have made the best choices for yourself when the need arises and hope not for many years to come.”
Meetings in a Minute PHA provides meeting topic kits to help you plan meetings without a speaker, or around topics such as caregiver support and transplant.
Perry Mamigonian: “We’re trying to organize an art class that is part of the complimentary therapy program at a local medical center. The class is designed to encourage patients to unlock emotions and ideas and express them through art. Our plan is to create a mosaic of the works and display them in the medical center as an awareness project.” Susie Alvarez: “I have often considered a chair yoga or chair zumba class as a support group topic.”
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Use Your Sign-In Sheet During your meeting, you probably circulated a sign-in sheet like the sample we provided you below. If so, great! You now have a great list for communicating in between meetings. Type up this list and create a directory of your members. You don’t have to distribute it to anyone unless you offered to connect members with each other or with PHA. You can also contact them directly and call them up to let them know about future meetings and activities. Even if you have small turnout at your first meeting, you can still call or email the people who attended and remind them of future meetings. You can find out what they hope to gain from participating in the group and learn what topics they’re interested in hearing about. Many leaders create email lists and send messages to their members weekly to let them know about updates from PHA or new opportunities to get involved or learn more about PH.
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Young Adults at Support Groups When hosting meetings, some of our support group leaders have asked themselves, “where are the young people?” or maybe even wondered where the middle-aged patients are. The typical PH patient is “a woman in her childbearing years.” We know that children, men and the elderly are also afflicted with PH, but if it’s primarily women in their prime, then does your support group membership primarily look like women in their 20s, 30s and 40s? Do young people find other forms of support instead of in-person groups? Maybe. Young adults might be using online resources to find answers as well as support. Sometimes young adults show up to a meeting and never come back. Whatever the psychology around the attendance and attraction to support groups by certain age groups, we know that there are ways we can proactively reach out to younger populations and ways to welcome and keep them coming back. There are some things that could appeal to younger patients: 1) Group dynamics: Think about how new members are being welcomed and integrated into the group at your meetings. If you are running a group by yourself we know it can be tough to keep your eye on everything that’s going on (speaker, food, name tags, sponsors, sign-in sheet, etc.). Perhaps you can engage a younger member of the group to serve as a “welcome committee,” making sure especially that firsttimers get introduced to others and feel welcome from the start. 2) Intergenerational meeting topics: While some topics – like treatments and travel – will likely appeal to group members of every age, keep in mind that younger patients also have different concerns (relationships, career, etc.) and would appreciate an outlet at which they can be discussed. Check with younger patients in your area to learn about the topics that might also appeal to a younger audience. Even with age differences, many subjects will appeal to a diverse range of patients. Addressing intergenerational topics might just bring a new spark to your group. 3) Positive atmosphere: Many support groups focus on sharing experiences about living with PH. But if meetings are perceived as primarily focusing on the negative aspects of PH, some people may not want to return. It’s essential for groups to provide an outlet for discussing the hard parts of PH, but as leaders you have the opportunity to bring a positive note to the conversation as well. 4) Outreach and advertising: Remember that younger patients use different communications vehicles to get information. Try to post information about your meetings in a variety of places, including Facebook or other online communities likely to reach patients of diverse ages. If you have some younger participants in your group who are savvy about social networking, this would be another great way to actively involve younger members of our community in your group.
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Handling Challenging Issues Group dynamics with a mix of personalities may mean that some difficult questions or tensions may arise during meetings. Here is a list of situations you may need to address and how you might handle them. The issues listed on this page may never occur in your meeting, but in case they do, it’s good to be prepared. People will look to you as the leader for a response or a solution.
Issue: A member needs a lot of attention or is taking away time from others. Your response:
Set time limits to discuss issues Redirect when possible to include the entire group Ask others for input Provide one-on-one support in private Provide a willing “buddy” who has had similar issues
Issue: A member is negative, constantly complaining about one issue or another. Your response:
Allow venting for a determined length of time (3 –5 minutes) Ask group for suggestions and solutions Take charge by summarizing the solutions Tactfully terminate by acknowledging the need to address the needs of all If all else fails, speak privately to the individual
Issue: A caregiver is not supportive of their patient or is hostile to the group Your response:
Approach the caregiver one-on-one after the meeting Stress the need for all members to remain supportive of the group Remind the entire group the purpose of the meeting (support, hope, information) Post expectations of behavior and conduct
Issue: Someone mentions a questionable/unknown herbal remedy. Your response: Tell your group about the following: There is no one natural substance that is good/works for everyone. Always speak with your physician to review meds and herbal supplements. Herbal products are NOT FDA approved or regulated.
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“Gloomy Gus” Pulmonary hypertension patients – and their caregivers – are no strangers to depression. For many, the diagnosis and misdiagnosis cycle put patients and their family in emotional distress. Many of your newly diagnosed patients are going through hard times. But then there are those who, even long after their emotional roller coaster of a diagnosis, still feel upset and stressed out. It’s difficult to distinguish between temporary emotional distresses and long-term, clinical depression. On our Support Group Leader Yahoo group, there has been much conversation about “Gloomy Gus” (also known as “Debbie Downer”) – the person who can’t find anything good in life, a constant source of negativity. How do you keep your group optimistic while helping out these “Gloomy Gus” members?
Be prepared: At some point, you may have a “Gloomy Gus,” or patient in need. Don't let it throw you off course when it happens. Be prepared with responses.
Advice from a fellow leader: Acknowledge the person's feelings of helplessness and hopelessness. Reflect back to them what you understand them to be saying. If you have misunderstood, most people will correct you. People need to vent their feelings in a group that understands them. Ignoring their feelings or deflecting them without the person feeling they've been heard often causes the person to keep dwelling in that "deep, dark hole" that they can't even see out of, let alone climb out of. That being said, they cannot monopolize the group. And since it's not a therapy group, the leader can't allow it to become so. I think the leader needs to be sensitive to the other members’ comfort level with someone who is depressed. If the other members seem to have reached their limits, or if they aren't able to empathize with Gloomy Gus, then it's a good time to suggest that the two of you talk one-on-one after the meeting. Then you can help the person find the help they need.
Acknowledge the person: "I can understand why you would feel that way.”
Empathize: "I've felt that way myself. Haven't some of you all felt the same way?"
Let it out: Sometimes people need to cry. It’s a natural part of coping, and it feels good to release the stress of living with PH. If members cry, a gentle touch on the hand or shoulder might be supportive. However, everyone is different and might just need space – use your best judgment on the person and situation when considering physical demonstrations of support, like hugs. Whatever the case, support groups need to be a safe place for emotional expression.
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Stop them! Before “Gus” has his/her chance to convey too much negativity, try to steer them back to what the group is really about! o Example: "One of the goals of this support group is to find ways to make our lives better. We want to make the best of what we have and appreciate what we have. Things have changed in our lives, but things change in everyone's lives. It may not feel like it now, but things can get better. "
Get back on track: After stopping “Gus” from proceeding with the negative thoughts, try turning the conversation to positive ideas, or change the subject completely: o "Does anyone have suggestions on how he/she can improve his/her situation or outlook?" o "Thank you for mentioning that. We can discuss it personally later. Let's move on to . . . " o After the meeting, consider suggesting the patient talk to his doctor about the emotional struggle with PH. Depression affects about one-third of patients suffering chronic disease.
Practice: If you practice your response in your head or with a friend, you will feel more comfortable responding when a situation arises in your group.
Keep to a routine: Having a scheduled topic, icebreaker, routine, and/or speaker can help keep negativity down. At every meeting, go around the room and have members introduce themselves with their names, how long they’ve been diagnosed, treatment, doctor, and an ice breaker question: o If you were an animal, what kind of animal would you be and why? o If there were a national holiday in your honor, how would it be celebrated? o If you were a kitchen appliance, which one would you be? o Where would you go on your dream vacation?
Rely on group goals: If your group has goals, you can always fall back on them in tough situations. It also helps to remind members of your group’s goals: What is its purpose? o Is it to live better in spite of pulmonary hypertension? o Is it to care and share with others who are affected by PH? o Does your group focus on being aware of medical information that helps with quality of life and care?
General Notes: People expect you, as a leader, to step in and facilitate the conversation when necessary. If a patient needs help beyond what is reasonable or expected from the group, you may need to suggest time after the meeting to have a one-on-one chat to help them. During this time, you may suggest they discuss some of their feelings with a doctor or a trained professional. It’s a conversation that may not be appropriate to have in front of the entire group, and it should be done with patience and sensitivity. Call PHA support group coordinators to discuss this further. - 13 - | P a g e
In the Face of Loss: Grief and Hope Nearly 30 support group leaders participated in a special Second Tuesday leaders’ training on grief. The call was facilitated by the Rev. Dr. Steve White, a priest of the Episcopal Church who has been involved with helping PHA support groups deal with grieving and spirituality since losing his daughter to PH. He also serves on PHA’s Board of Trustees. The purpose of the call was to discuss grief as it relates to coping with death in the support group. This includes the effect of a patient passing on the group as a whole and how leaders are affected by loss of patients over time. Below are some tips and inspiration that came out of the conversation.
“We are a community of hope, but we are also a community of loss.” –Unknown
Two Kinds of Grief There are two kinds of grief: the grief experienced in the loss of a loved one and the grief experienced in the change in identity. Here are some examples of the two types of grief: GRIEVING THE LOSS OF CAPACITY, FUNCTION OR CHANGE IN IDENTITY LOSS OF A LOVED ONE Loss of ability to work Death of a family member Death of a close friend Loss of ability to care for children, spouse or other family members Death of a fellow support group member Foregoing pregnancy Loss of mobility Loss of independence Loss of old identity The Language of Death in Contemporary American Culture: Steve White explains that over the past decades, our notions of death have shifted as we steered away from the reality of a death. He illustrates this by showing how we used euphemisms to avoid the pain of facing death over the last 50 years. 1961- My grandfather died.
1971- My grandfather passed away. 1981- My grandfather passed. 1991- My grandfather is no longer with us. However, Steve says it is important to talk about grief and death: “Through the ages, people have talked about the importance of grappling with the issue of grief and have talked about how damaging it is to the human condition to suppress it… Many people have talked about the importance of dealing with this issue.” - 14 - | P a g e
The Old Way to Think About Grief For the past 40 years, Elizabeth Kubler-Ross’s five stages of grief have been the prevailing approach for dealing with grief. Steve suggests that the “old way” of thinking (that these stages must be followed through to the end in sequence) places too much emphasis on grief as a sickness. He says these stages have never been scientifically proven. We all have to experience grief; it isn’t pathological. Steve White: “The idea was that you HAD to go through all of these stages and if you didn’t there was something wrong with you. You had to go through these stages in ORDER. BUT, there are several problems with this... [People who did not go through this sequence] believed there was really something wrong with them. Many people had expectations placed upon them after the death of a loved one, and those expectations were almost as burdensome as the loss itself. The last thing you want to hear when you’ve lost someone is that you’re grieving incorrectly.”
There’s a new way to think about grief: “most people are resilient.” According to the work of psychologist George Bonanno: 50% of people are resilient. After a fairly short period of time, these people are able to bounce back and maintain healthy functioning. 30% of people are in recovery. These people take a little bit longer to return to normal functioning and getting out of depression, but usually these people eventually become resilient. 80% of the population returns to normal functioning. Less than 20% of people have lasting grief. These are the people that have not been able to return to “normal” functioning even as much as two or three years after a loss. These people may benefit from professional counseling. Steve White: “The consequence of this new model is that there is less counseling and medication, but more emphasis on individual ways of dealing with grief. There’s no right or wrong way to do it…There is much more of an emphasis on ordinary networks of people in our lives over psychologists… just our friends and support group members in our life… relying on those people for support is much more important.” - 15 - | P a g e
Pulmonary Hypertension Association 801 Roeder Road, Suite 1000 Silver Spring, MD 20910 Phone: 301-565-3004 • Fax: 301-565-3994 Patient-to-Patient Support Line: 800-748-7274 www.PHAssociation.org Made possible by an Awareness Month Sponsorship by
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