Excerpted from "Strength In Numbers," Stroke Connection Magazine March/April 2003 (Last science update July 2013)
KISSS – Keep It Simple Stroke Survivor
Starting and maintaining a stroke support group is a lot of work and requires the input of many, but people helping people isn’t a complicated idea. Here’s how you can keep it SIMPLE:
- Supportive – Ask caring questions; listen attentively to the answers.
- Inspirational – Reassure others that life gets better.
- Motivational – Encourage action and acknowledge improvement.
- Practical – Offer options, helpful tips and resource information.
- Life-affirming – Avoid comparing stroke stories; don’t deny or devalue the feelings of others.
- Educational – Talk about what’s worked for you and others; make suggestions, don’t give advice.
The following information highlights important things to keep in mind when starting and maintaining a group. For more detailed information, download our free booklet Successful Support Groups. It’s 30 pages of good ideas for starting and growing a stroke group.
Once you've started, be sure to register your group with American Stroke Association.
For examples and helpful tips read stories of successful support groups.
If You Start One, They Will Come
Starting a group requires a lot of work, but the payoff is tremendous satisfaction from helping stroke families rebuild their lives.
The best way to lessen the workload is to get others involved from the start. Sharing will make getting organized easier and instill a sense of ownership in the group. Laying a strong foundation from the beginning has long-term benefits such as dedicated members, widespread publicity and committed leaders.
Start by contacting survivors, family members and healthcare professionals for guidance and ideas. Ask for names of people that might be interested. Once you find two or three interested people, you are ready to take the next steps.
Organizing a new support group will be easier if you include these components:
- A key person (or two!) – Nothing gets you done until someone takes responsibility. If not you, who?
- An adviser or group facilitator – This may be a therapist or social worker, someone familiar with the impact of stroke on families.
- A sponsoring agency – Sponsorship may be as simple as providing a space once a month, or as involved as producing a newsletter and providing transportation.
- A planning committee – As important as key people are, they can’t create a group by themselves. Support and input from others is crucial. The planning committee should represent a spectrum of experience: survivors, caregivers, therapists, social workers and psychiatrists.
Ingredients for Successful Support Group Meetings
Effective stroke support groups are no accident, they generally have a monthly meeting that includes:
- An educational component – Experts and practitioners can make the lives of stroke families easier with pertinent information.
- A recognition component – People always need to be acknowledged for their incremental victories: anniversaries, achievements, and changes in health status.
- A social component – Members need time to mingle, talk, and get to know one another.
- A refreshment component – Food is always appreciated.
- Leadership development – If the current leaders don’t prepare new leaders, the group will fold when the current leaders leave. Leaders are groomed by being given challenging tasks and increasing responsibilities.
- Emotional Support – Groups that foster an environment of emotional support through a buddy system, welcoming committee, or peer visitor program have a greater impact on their members’ lives.
- Information swapping – No one knows everything there is to know about stroke. Trading information and brainstorming solutions lessens the workload for new stroke families and gives the old hands a reason to keep coming.
- Resource networking – The collective wisdom, knowledge and experience of a stroke group is an effective tool that provides many resources for members.
What the most effective group meetings are not:
- They're not a pity party. It’s a place where survivors and caregivers can share honest feelings and frustrations and work toward solutions.
- They're not just social events. A group that focuses only on social activities limits its opportunities to better the lives of its members.
In addition to monthly meetings, stroke support groups often schedule some special occasions. Here are a few ideas from successful groups:
- Holiday parties. Holiday get-togethers are a great way to end the year. Some are purely social, others include awards and recognition.
- Picnics. Spring and summer are a good time for a casual meetings with food and friends.
- The Post-Stroke Games of Texas. An annual event showcasing such “Olympic” events as beach-ball volleyball, checkers and miniature golf.
- Bi-Monthly Sing-along. What started as a choir of stroke survivors with aphasia has turned into a regular songfest for stroke families.
- School visits. Stroke education in the public schools is an excellent opportunity for teaching basic information about the cardiovascular system and risk factors, as well as creating awareness about people with disabilities.
- Health fairs. Local health fairs offer a good opportunity for stroke groups to get into the stroke education business.
- An evening out. Stroke groups often organize an evening event such as a visit to a local dinner theatre or concert. With enough advance planning, groups can often negotiate reduced rates.
- Peer visitor program. Stroke groups often organize peer visitation of new stroke families, who are frightened and looking for answers. These visits are often a lifeline at a crucial time.
- Rap sessions. Some groups sponsor informal discussion groups on any topic of interest to those who attend.
- Awards banquets. Successful stroke groups are full of people who deserve to be recognized, which helps build commitment and community.
It’s important to remember that special activities aren’t spontaneous. They take planning and coordination. Special events are great opportunities for stroke survivors to challenge themselves and expand their skills. The people producing the event have life-enhancing experiences on the path to meeting whatever challenges they encounter. And everybody has a good time.
“Strokes are like fingerprints,” says stroke survivor Candace Howerton. “No two are the same.” And because of that, specialized groups meet special needs.
- Younger Survivors – As Candace Howerton experienced, the needs and concerns of older survivors are very different from younger survivors. Things like sex, dating and going back to work are important issues for them.
- Aphasia Groups – People with aphasia have special communication challenges that a group setting can address effectively.
- Caregiver Groups – Many stroke groups break into survivor and caregiver groups at their monthly meetings. There is a growing trend toward caregiver-only groups because many challenges faced by caregivers are not disease-specific. Caregivers benefit from sharing time with each other.
- Internet Groups – For some survivors, mobility is an issue. For those with computers, there are Internet support groups. For more information, visit Online Support.
- Umbrella Organizations – In metropolitan areas, stroke groups are coming together and forming regional organizations that help in programming, training, sponsorship and resource networking.