Support Group Leader Kit

IC/BPS support groups are gatherings where people can learn more about interstitial cystitis/bladder pain syndrome (IC/BPS) and talk to others with the same condition. IC/BPS patients will often express profound relief when they first talk to someone who shares their symptoms, concerns, and frustrations. Talking with another IC/BPS patient over the phone, via the internet, or at a support group can be an important first step for a patient in breaking through the mental and physical isolation many feel after being diagnosed.

Today, IC/BPS support groups can take on a variety of forms. Some groups function completely online via email lists or message board systems. These formats are particularly beneficial for patients who live in rural areas or for those patients whose condition makes it difficult to travel. More traditional IC/BPS support groups meet at a common location, offering patients valuable face-to-face time with others who have IC/BPS.

IC/BPS support groups are informational and not intended to be group therapy sessions. These groups are more successful when they are not monopolized by an IC/BPS patient seeking group therapy or support for mental health issues related to chronic illness. These types of groups are best left to professionals.

IC/BPS support groups are not just for the patients. Spouses, family members, and others can also be encouraged to attend meetings so that they can learn more about the condition that is affecting their loved one. IC/BPS support group leaders are commonly also IC/BPS patients, but some groups are lead by nurses, physicians, or others who are dedicated to IC/BPS patient outreach. Other medical professionals may attend either as guest speakers or to answer questions that they may not have time to answer in a typical office appointment.

Support group members who struggle with lower health literacy due to education levels, economic levels, culture, and access to web-based literature will be attending your meetings. Cultural and age differences prevent people from challenging their health care providers in any way. Letting them know that it is okay for them to be their own self-advocate is an important lesson and one that may be difficult for some people to learn.

IC/BPS support groups are informational and not intended to be group therapy sessions. These groups are more successful when they are not monopolized by an IC/BPS patient seeking group therapy or support for mental health issues related to chronic illness. These types of groups are best left to professionals.

Anyone does!

All you need is a desire to help people and a willingness to learn about current IC/BPS diagnostic procedures, therapies, and research. In fact, most support group leaders start small and grow into their role, learning as they go.

Remember, the role of a support group leader is to provide support, not to dispense medical or psychological advice. Therefore, it is important for you and your members to avoid any behavior that may be interpreted as illegal including the promotion of unapproved products or therapies.

IC/BPS support group leaders can be involved in any of a variety of IC/BPS support-related activities such as:

• Planning and facilitating support group meetings
• Offering education and encouragement to IC/BPS patients via the phone and/or email
• Establishing and moderating email listservs and social networking groups
• Connecting with physicians, nurses, dietitians and other medical providers

Once you have decided to become a support group leader, consider your skills and choose a support group format that is in line with your likes and abilities:

• Are you comfortable leading group discussions and speaking in public? Do you have time to organize and plan two to six support group meetings per year? Consider starting a group meeting support group.
• Are you willing (and do you have the time) to take phone calls from local IC/BPS patients who need support and understanding? Then maybe being a phone support person is a great start for you.
• Are you a tech savvy person who likes to connect with people online? Then maybe establishing an online support group for local IC/BPS patients would be the perfect place for you to begin.

Finally, the best way to start a support group is to find a partner (or two) to help. Different leaders not only bring different talents to the leadership team, but if you are an IC/BPS patient as well as a support group leader, it is always nice to have someone who can take over the meetings when you don’t feel good.

You can think your volunteer role is that of “manager” – that way, delegating responsibilities to others will be easier and will reduce your chance of burnout. Keep in mind that you are unable to provide a cure for people with IC/BPS who contact you in your role as support group leader. You are not expected to fix people’s problems. Rather, you encourage them to help themselves and provide the outlet for them to receive the necessary information to be able to do so. Do not take on the weight of the world.

Time on the phone and email can be a drain on your personal space, so you should seek out others from the group to field telephone calls and emails on your behalf.

Keeping in mind that a support group leader is considered by attendees to be someone “in the know,” you should be as educated as you can be about treatment options and self-help tools. The best place to get reliable information is on the ICA website, ICA Update, and by signing up for the ICA eNews.

The structure of your IC/BPS support group may depend on a variety of factors including:

• Your proximity to different types of medical and meeting facilities

• The needs of IC/BPS patients in your area

• The number of people available to help

• Your own interests and abilities

Are Support Groups Considered a Charity?

Most support groups operate as informal gatherings, and as such, “donations” provided to the group are not considered tax deductible. If you feel you would like to incorporate as a charitable organization, please visit www.irs.gov/charities/index.html to learn more.

Traditional Support Groups

For traditional in-person support group meetings, start by asking yourself these questions:

• What days and times are good for meetings?

  This will depend on your schedule and the preferences of group members. Most support groups choose to meet on a weekday in the evening, but others have found that more patients can attend if they schedule meetings on Saturday or Sunday afternoons.

• How often are meetings held?

  As the leader, this is up to you and your schedule. Do you have the time and energy to plan monthly meetings or would you rather meet quarterly? If you do not currently have a co-leader, you may want to keep the number of meetings to a minimum at first, expanding as you get more volunteers to help. Most people find that meeting once a month (schedules permitting) is sufficient to keep optimum interest and attendance. Others decide to meet every other month, have quarterly meetings, or monthly meetings in the spring and fall with a winter and summer break.

• How long do meetings usually last?

  The majority of support groups seem to meet for about an 1 ½ to 2 hours, but some groups that only meet quarterly may schedule more time, allowing for additional speakers and time for patients to share with each other.

• Where can you hold your meetings?

  Have your schedule handy when you call to find a meeting location. Many hospitals, medical centers, physicians’ office buildings, churches, libraries, and community centers provide rooms for support groups for little or no charge. Be prepared with your specific request and have information on IC/BPS handy when calling to request a meeting space. You will be surprised at how quickly you’ll be able to secure something!

  Some things to consider are: the size of the room, proximity to a restroom, handicap accessibility and how many major access roads are close to the building. It is best to find a meeting place, and then stick with it. In other words, try to have your meeting at the same location each time.

• Are you comfortable working with the technology required by some speakers?

  Some speakers prefer to use PowerPoint slides, a projector, or other visual media when giving presentations. If you’re not comfortable working with these types of technology, do you have someone you can call on for help if you need it?

• Find a Partner

  Find a partner (or two) to help. Different leaders not only bring different talents to the leadership team, but if you are an IC/BPS patient as well as a support group leader, it is always nice to have someone who can take over the meetings when you don’t feel good.

• Remote Support Group Formats

  Not all support groups meet in person. In fact, your first contact with patients is likely to be over the phone. Patients or family members may call simply to learn about your meetings or they may need additional information. Often, they just need to talk. Many IC/BPS support group leaders provide support strictly via the phone. 

  Other remote support group formats would include email lists, websites, blogs, and social networking forums such as Facebook and Twitter. In these cases, your group’s presence can be made either public or private, allowing you to control the people who have posting privileges. These, “virtual” support groups are great for patients who live in rural areas and for patients who find traveling difficult. Many IC/BPS support groups that have in-person meetings also use these virtual systems to supplement their support between meetings and advertise a calendar of events. For more information, see: Online Resources.

Regardless of how you schedule your meetings, it is important to be consistent in order to encourage attendance. Setting a schedule in advance (such as meeting the third Thursday of each month) may result in higher attendance than just scheduling meetings on the fly.

As the support group leader, planning for your meetings is an important step to ensuring the success of your group! Your goal is to have your IC/BPS support group be as informative and supportive as possible. Support groups can be as individualized as the patients who attend them. Ask your members what topics they are interested in or if they have suggestions for speakers. However, unless you are a trained professional, you should be diligent in keeping the group from evolving into a therapy session. One way to do this is to choose a specific topic of conversation for each meeting. However, this doesn’t mean you need to prepare a presentation or have a speaker each time you meet. Informal meetings can be very successful, but having a topic can help frame your meetings as positive experiences for those who attend.

The following is a list of popular topics:

Self-Help Strategies

• Coping strategies
• Journey to acceptance
• Journaling
• Diet and nutrition
• Stress and anxiety reduction
• Hints for getting better sleep
• Common flare initiators

Medical Treatments and Therapies

• Current IC/BPS research

• Medications for IC/BPS
• Over-the-counter options
• All about installations
• Electronic stimulation
• Alternative and complementary medicine
• Physical therapy
• Pain management
• Sexuality and relationship issues
• IC/BPS and pregnancy
• Treatment mythbusters

Navigating the Healthcare System

• Evaluating your doctor/patient relationship
• Preparing for a visit to your doctor
• Fundamentals of disability insurance

 Advocacy

•  How to be an advocate discussion: Discuss ways you can be IC/BPS advocates. 
• Group letter writing session: Send a letter to your Congressperson telling them about why IC/BPS is important to your support group members and urge them to support increased NIH research funding for IC/BPS. Find out how to contact your Congresspersons.
• Voices of Hope blog discussion: Read a Voices of Hope blog entry and discuss as a group. Write your own blog entry (individually or as a group) and submit it to Voices of Hope at icamail@ichelp.org.
• Other advocacy ideas.

Fun Topics

• Share ICA YouTube videos with your members
• IC/BPS friendly vacation ideas
• Recipe exchanges
• Hints for the holidays
• Considerations for travel
• Getting friends and family on board
• Books and other valuable resources for IC/BPS patients

Check out Handouts in the LeaderKit for information about free handouts on key subjects of interest. Additionally, you can pass out ICA Resource Materials Guides to group members so that they may order additional information on a given subject.

Alternate Meeting Ideas

Remember, your meetings don’t all have to be about IC/BPS education. Plan a “non-IC/BPS” IC/BPS support group meeting now and then to keep the fun in it! Even without an IC/BPS topic, the patients will open up and talk about their feelings and experiences with the disease.

• Meet at a restaurant. Call ahead to learn what IC/BPS safe foods they offer and have a menu prepared especially for your group.

• Hold a bladder friendly pot-luck and recipe exchange.

• Organize a holiday cookie exchange (bladder friendly or not).

• Have a scrap-booking afternoon.

• Set up a date night: Plan an event where the spouses can attend in a social atmosphere. No IC/BPS talk allowed.

• Coordinate a letter writing campaign to a local news station, a talk show such as Oprah, etc. to help get the word out about IC/BPS and educate the community.

• Plan a holiday party where everyone brings a toy for the Children’s Hospital, Toys for Tots, or something similar.

• Invite an exercise therapist who is familiar with IC/BPS to teach simple exercises.

• Arrange an art therapy session. Have an art therapist come to talk to the group (you might be able to get a student) about how art can help with a chronic illness. Have them lead your group in either individual or group projects.
• Organize a campaign for political awareness or media awareness as a group project

IC/BPS support groups are informational and not intended to be group therapy sessions. These groups are more successful when they are not monopolized by an IC/BPS patient seeking group therapy or support for mental health issues related to chronic illness. These types of groups are best left to professionals.

Although you don’t need a speaker for every meeting, guest speakers can be a great way to encourage attendance and provide your group members with valuable information.

Possibilities for speakers include:

• Physicians (urologists, urogynecologists, pain specialists)

• Nurses (nurse practitioners and urology nurses)

• Registered dietitians

• Physical therapists

• Alternative medicine practitioners

• Pharmacists

• Health insurance professionals

• Social workers or family therapists

• Ministers, rabbis, or other spiritual educators

• Attorneys knowledgeable about disability cases

• Political representatives

Lining up guest speakers may sound like a daunting task, but it can be as easy as placing a phone call. Have a topic in mind before you call and be ready to explain what interstitial cystitis is if necessary. Some speakers may make a presentation at your meeting for free, but other speakers may request an honorarium. If you don’t have a budget for your meetings, consider approaching your local urologist to support the speaker’s fees and/or expenses. 

Electronic Presentations

An alternative to having a speaker come in person is to use some sort of electronic meeting format:

• Webinars use a computer program to connect multiple people to a presentation. Your group will be able to view the speaker’s slide presentation even if the speaker is hundreds of miles away.

• Teleconferences can be a great way to have a question and answer session with an IC/BPS expert. All you need is a phone with a speaker that is loud enough for a group to hear.

• Videoconferencing can be a great way to get a speaker to attend your meeting without the travel expenses. As long as you have internet access at your meeting site, you can download a program like Skype® (www.skype.com), hook a laptop up to a monitor or projector, and the attendees will be able to view the speaker almost as if s/he was actually there.

A Final Note About Guest Speakers

IC/BPS support group meetings should be unbiased educational forums, not sales pitches for unproven product claims, or product endorsements. You may want to avoid scheduling guest speakers for your meetings whose sole intent is to sell their product or service to your meeting participants. Likewise, you may want to discourage individual members of your group from selling their own products and/or services to your meeting participants. Remember to keep the focus of your group on proven information and support and not on the selling of untested products and/or services.

Support group leaders should consider sending a follow-up thank you note to speakers. This will not only show appreciation for their time, but can subtly encourage them to refer potential future speakers to the group. Every professional speaker has a big sphere of influence in their professional arena. Past speakers are great resources for finding future speakers.