Thinking of starting a stroke support group? It may seem a daunting task, but here’s how to 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; suggest, but don’t give advice.
If You Start One, They Will Come
Starting a support group requires a lot of work, but the payoff is helping stroke survivors and their families rebuild their lives. They will need help adjusting to the changes in their lives — and there’s no better way than connecting with others who have also had an experience with stroke. A caring and supportive atmosphere will ensure they don’t feel alone. They will make new friends, renew hope and be empowered on their post-stroke journey.
There’s a lot to consider before you ever hold the first meeting. Use this information to help guide your plan for establishing a new group. For more detailed information, download our free 30-page guide Successful Support Groups for lots of great ideas.
Know that you don’t have to do this alone — contact survivors, family members and healthcare professionals for guidance and ideas. Ask for names of people that might be interested in helping you run the group. Once you find two or three interested people, you’re ready to take the next steps.
Organize a support group with these components:
- Key person (or two!) – Nothing gets done until someone takes responsibility. If not you, who?
- Adviser or group facilitator – This may be a therapist or social worker, someone familiar with the impact of stroke on families.
- Sponsoring agency – Sponsorship may be as simple as providing space once a month, or as involved as producing a newsletter and providing transportation.
- Planning committee – Support and input from others are crucial. The planning committee should represent a spectrum of survivors, caregivers, therapists, social workers and psychiatrists.
Include these key ingredients for successful support group meetings:
- Education – Experts and practitioners can provide relevant information and tips at different stages of post-stroke recovery.
- Recognition – Acknowledge members for their incremental victories — no matter how big or small: anniversaries, achievements and changes in health status.
- Social – Make time for members to mingle and get to know one another.
- Refreshment – Food is always appreciated.
- Leadership Development – If current leaders don’t prepare new leaders, the group will fold when current leaders leave.
- Emotional Support – Groups that foster emotional support through a buddy system, welcoming committee or peer visitor program have greater impact on their members.
- Information Swapping – No one knows everything there is to know about stroke.
- Resource Networking – The collective wisdom, knowledge and experience of a stroke group provides many resources for members.
The most effective group meetings are not:
- A pity party
- Just social events
Make it special.In addition to monthly meetings, stroke support groups often schedule additional gatherings or celebrations. 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.
- Organized group games or friendly sporting competitions.
- Sing-Along. A choir of stroke survivors with aphasia can turn into a regular songfest for stroke families.
- School visits. This 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. This is a good opportunity for stroke groups to provide helpful information.
- An evening out. Organized evening event such as a theater or symphony visit. Groups often negotiate reduced rates.
- Movie night.
- Dine out. It can be as simple as getting together for coffee or more involved like lunch or dinner.
- Peer visitor program. Stroke groups often organize peer visitation of new stroke families who are frightened and looking for answers. These visits are a lifeline at a crucial time.
- Rap sessions. Some groups sponsor informal discussion groups on topics of interest to those who attend.
- Awards banquets. Successful stroke groups are full of people who deserve to be recognized.
Specialized groups include:
- Younger Survivors – Topics like sex, dating and going back to work are important issues for the younger crowd.
- Aphasia – People with aphasia have special communication challenges that a group setting can address effectively.
- Caregiver – Many stroke groups split up survivors and caregivers in their meetings. Caregivers benefit from sharing time with each other.
- Internet – Mobility is an issue for some survivors. So can be distance if there are no local groups available. Today, there are many online groups, and you can start by visiting the Support Network — there is a group for stroke survivors and one for caregivers.
- Umbrella Organizations – In metropolitan areas, stroke groups form regional organizations that help in programming, training, sponsorship and resource networking.
Once you’ve started, be sure to register your group with the American Stroke Association. Your group’s information will be part of a national registry, so stroke survivors and caregivers can find you more easily.
For more examples, helpful tips, and stories of successful support groups, download the Successful Support Groups guide.