Successful Stroke Support · 2020. 7. 22. · show more progress, too. The family was greatly...

Our guide to organiz ing successful stroke support groups

SuccessfulStrokeSupportGroups

The American Stroke Association is fighting backagainst stroke.

For more than 50 years, the American HeartAssociation has funded research to discover newways to prevent and treat stroke. We have alsodeveloped programs and patient and professionaleducation materials to raise public awareness aboutthis deadly disease. And, in 1998, we created theAmerican Stroke Association as a division of theAmerican Heart Association to intensify our effortson behalf of stroke survivors and caregivers. Ouractivities include:

• Teaching families the warning signs of stroke.

• Funding research to find new ways to preventstroke.

• Developing guidelines for physicians to treatstroke.

• Providing stroke survivors and their families aplace to get answers after stroke.

The American Stroke Association is a nationwidenetwork of stroke survivors and caregivers sharinginformation, experience and support with anyoneaffected by stroke. The association also includesdedicated professionals from many different medicaland research disciplines, all united to reducedisability and death from stroke.

Introduction1 American Stroke Association

I. Why Start a Stroke Support Group?2 Living With Stroke: An Adjustment for the

Family2 The Need for Peer Support, Hope and

Encouragement3 Discovering the Value of Support4 Finding a Way To Help

II. How Are Stroke Support GroupsStarted?

5 Setting Goals5 Getting Organized6 Finding Leaders and Facilitators7 Next Steps8 Finding Members9 Identifying a Meeting Place10 Acquiring Funds for Activities and Other

Expenses

III. How Do We Make Our Stroke Groupa Success?

11 Developing Opportunities for Providing CaringSupport

11 Making Careful Word Choices11 Establishing Group Guidelines12 Sharpening Your Listening Skills

IV. What Type of Program ActivitiesShould We Plan?

15 Staying Flexible15 Providing Structure for Meetings18 Deciding on Educational Programs19 Planning Social Activities and Entertainment19 Challenging Stroke Survivors20 Encouraging Group Discussion and Peer

Support20 Extending a Helping Hand

V. Will Our Stroke Group Continue ToGrow?

22 Watching Group Members Come and Go22 Reaching Out to New Members23 Keeping Members Informed and Involved24 Finding the Secret Formula for Success

VI. What Resources Are Available To HelpGroup Leaders?NationalGeneralRehabilitationCaregiverMental HealthFinancialEmploymentPatient RightsChildren

Table of Contents

…A Nationwide Network of Stroke Families HelpingStroke Families

The American Stroke Association, a division of theAmerican Heart Association, is dedicated to helpingstroke survivors rebuild their lives. The AmericanStroke Association’s Stroke Family Support Networkis a clearinghouse of information about strokeprevention, treatment, rehabilitation and recovery. It helps consumers learn about stroke…what it is,where to go and what to expect after a stroke. Over 1,800 stroke groups and more than 36,000individuals throughout the United States are part of the Stroke Family Support Network.

American Stroke Association partners bring hopeand encouragement to the nearly 5 million strokesurvivors in the United States through a wide variety of peer support and educational services.The primary network programs, services andactivities are:

800 Stroke Family “Warmline”

A toll-free information and referral line (1-888-4-STROKE [1-888-478-7653]) helps familiesconnect with other stroke survivors and caregivers to get tips on daily living and other peer informationand support. Many of the Stroke Support Specialistsanswering the calls are also stroke survivors orcaregivers.

Stroke Connection Magazine

This award-winning, 32-page, four-color, bimonthlyhealth education and outreach magazine extendsthe voice of the American Stroke Association beyondthe network of support groups. Information on strokeresources, caregiving, treatment advances, self-carestrategies, coping skills and real-life experienceshelp stroke families and healthcare professionalsthroughout the nation.

Call 1-888-4-STROKE to receive a free copy or visitStrokeAssociation.org and sign up today.

National Stroke Group Registry

The American Stroke Association encourages thedevelopment of stroke support groups and providesresources for them. New stroke groups across thecountry are registered, offering many benefits tostroke group leaders, including referrals of potentialnew members, and Stroke Connection Magazinefree for group members.

Patient Education Materials

The American Stroke Association offers magazines,fact sheets, brochures and other stroke-relatedinformation through the Stroke Family “Warmline,” 1-888-4-STROKE (1-888-478-7653).

American Stroke Association…help us help others help themselves. Share the American Stroke Association Stroke Family “Warmline.”

American Stroke Association

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Living With Stroke: An Adjustment for theFamily

Relationships often change drastically aftersomeone has a stroke. Physical difficulties and theemotional problems a stroke can cause may quicklychange how stroke survivors, their families andothers get along.

Survivors often say friends and family members feeluncomfortable around them. “He just is not himself,”people say. Or, “She is not like she used to be.” Theold circle of family and friends begins to disappear,and survivors say it’s hard to fit in like they didbefore.

After a stroke, even simple things like shopping,talking on the telephone or taking a walk may seemimpossible. Talking or writing a letter may be toodifficult for a stroke survivor who has problems usingor understanding language. Something as commonas going out to eat can be a major challenge.Survivors also may not be able to drive a car or usepublic transportation. Other day-to-day activities maybecome major obstacles to survivors.

Stroke affects more than the survivor. Familymembers can also be confused, frustrated and feelisolated. Relationships may become strained,especially when a family member becomes acaregiver. And the caregivers may get angry or feelguilty about their feelings toward the survivor, who istaking so much of their time and energy. Individualfamily members may have to adjust how they feelabout themselves and others as responsibilities shiftand family relationships change.

There are no easy answers to the problems a strokecan create. These changes can negatively affect thesurvivor’s rehabilitation and recovery after gettingout of the hospital. The longer a stroke survivor isnot in society, the harder it is to rejoin society again.

The Need for Peer Support, Hope and Encouragement

Stroke survivors and their family caregivers needhelp adjusting to the changes in their lives. That’swhy many stroke survivors join support groups.Sharing similar problems helps survivors learn to livewith the changes. Stroke support groups offersurvivors, their caregivers and other family memberschances to share concerns and support each other.They unite around their common experiences andfind positive solutions.

Stroke support groups allow stroke survivors to helpthemselves and other survivors create meaningfullives after stroke. Coming together in an atmosphereof caring and cooperation, survivors, their familycaregivers and friends can forge a new sense ofcommunity. New goals and friendships are started,renewing hope and encouraging independence.

A sense of empowerment is at the heart of a “self-help” or “mutual-help” group. It can motivate passive“patients” to become thriving survivors and createactive new roles for themselves. Stroke createsmany physical and emotional challenges. Eachstroke survivor faces a unique set of disabilities andlosses, and each copes with them in his or her ownway. However, the warmth, acceptance andemotional support that a stroke support group offerscan often be the key to uncovering the hiddenstrengths in many survivors.

Why Start a Stroke Support Group?

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I

Dealing With Your Isolation as a Caregiver

Peer support groups can be an important source of firsthandinformation. They may also be crucial for the caregiver’s ownwell-being. They can...

• Help you learn more about your loved one’s condition,including treatments, prognosis and what the future may hold.

• Provide information about the best community resources(including day-care centers, assisted-living services andhome-care nursing), the most responsive professionals andthe latest equipment.

• Create networking connections so you’ll have access to thebest care possible.

• Lessen the sense of stigma associated with being disabled.

• Give you an opportunity to joke and laugh about yourcircumstances with people who really understand and won’tjudge you.

• Give you an opportunity to cry and complain without othersmaking you feel guilty about your own needs and pain.

• Give you a moment to focus on just you.

• Alleviate your aloneness by introducing you to new friendswho understand.

• Help you brainstorm solutions to your problems.

• Relieve stress and help you feel more in control of your life.

• Give you hope as you listen to how others have coped insimilar situations.

Source: Adapted from Helping Yourself Help Others: A Book for Caregivers byRosalynn Carter ©1994.

Discovering the Value of Support

Social support is important in stroke recovery. Socialisolation has been called a risk factor for a pooroutcome after stroke. Family and friends provideimportant support for many survivors, but strokesupport groups can also play a vital role in strokerecovery. They can decrease the isolation of bothsurvivors and family, and introduce new friends toreplace those often lost after the stroke.

Stroke survivors not only face new disabilities, butalso possible medical complications and the need toprevent recurrent strokes. A stroke support groupthat empowers members with information andprovides emotional support can promote both goodhealth and a good quality of life.

When There Seems To Be No Hope

Chen’s family was very worried about him. Ever since hissevere stroke the month before, he had been acting verystrange. He had aphasia and couldn’t understand what peopletried to tell him.

He seemed to have given up on trying to communicate. In fact,he just sort of shut down. He often cried, too, which wasn’t atall like him.

Elaine, Chen’s wife, and their grown sons knew this behaviorwas unusual and that it probably required professional help.First they discussed Chen’s aphasia with his speech therapyspecialist. They wanted to see what they could do to lessenChen’s frustrations.

“Just keep trying,” Cheryl told them. “If talking doesn’t seem to work, try pantomiming. Try using pictures to communicate.Be positive around him, too,” she said, “but be yourselves.Reassure him and encourage him to stay relaxed. He’s beenthrough a big change, and it’s going to take time for everyoneto adjust.”

Still, despite their efforts, Chen seemed to withdraw more andmore. He began refusing to participate in his physical therapyexercises, too. The family spoke with Chen’s physician next.

“I wanted to see if we could shake this without resorting tomedications, but if Chen isn’t participating in his physicaltherapy, that could just complicate his health down the road,”Dr. Michaelson said thoughtfully. “We’ll try this for a littlewhile and see if it helps. I think if we can just get him throughthis, he’ll be OK.”

Dr. Michaelson put Chen on antidepressant medication andmonitored him carefully. The family noticed that Chen’s moodseemed to improve. He began to respond again to their effortsat communication. His speech and physical therapy began toshow more progress, too.

The family was greatly relieved. Now they felt they were backon track. But they knew they had a lot to learn about stroke anddepression. It was clear that Chen’s illness had affected them,too. With Chen’s agreement, the whole family joined a strokesupport group. Every week they got together with other familiesthat were experiencing the same things they were. It felt good to have a place where they could get their anger, fears, andconfusion off their chests. The best part was being with otherpeople who understood what they were going through.

Source: American Heart Association Family Guide to Stroke, ©1994, AmericanHeart Association. Published by Times Books, a division of Random House, Inc., 1994.

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Finding a Way To Help

Stroke families can’t benefit from belonging to asupport group if none exist in their community. Youcan help by organizing a new stroke support groupin your community or strengthening an existing one.

There are many ways to start and sustain a strokesupport group. What works for one group may notwork for others, since members are unique. Thepurpose of these guidelines is to help you plan agroup that fits the needs of your members.

Coming Back: You’re Not Alone

My first source of information was the public library. I took out every book I could find, some of them twice, which gaveme some answers to my questions. Then, fortunately, I heardabout stroke groups. An announcement in the local paperinvited anyone interested in such a group to a meeting at thelibrary, and thus the Wright County Stroke Club was born. This fledgling group, with no funding and little support, wasmy ray of hope.

I knew that a stroke group could not make my husband lessaphasic or more alert or stronger physically. But here werepeople — wonderful, caring, dear people — who understoodwhat my problems were. They, too, were seeking to put thepieces of their lives together again. They, too, knew the joys of small successes, as well as the heartache of continuedfailures in the long journey to a more meaningful and normallife. We were not alone!

— An excerpt from “Odyssey” by Inez Thoren, Caregiver, Stroke ConnectionMagazine November/December 1983

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Setting Goals

The purpose of a stroke support group is to providestroke survivors and their family caregivers anopportunity to support each other as they strive torebuild their lives and promote health, independenceand well-being. Goals clarify what the group wantsto accomplish. Consider these items as you developthe goals for your group:

• To provide accurate information for groupeducation that promotes a better under-standing of stroke recovery, rehabilitation andprevention of recurrent stroke.

• To offer a way for stroke survivors to meetothers with similar challenges and experi-ences and provide mutual positive support.

• To renew hope and promote independence byoffering opportunities for survivors tochallenge themselves and continue toimprove their performance of daily living activ-ities.

• To provide caregivers and family members astructured way to share and support eachother.

• To offer stroke families the resources andsupport they need to live an active and satis-fying life while coping with their losses anddisabilities due to stroke.

The goals of a stroke group should change as thegroup’s membership and focus changes. Review thegoals regularly and adapt or add to them. Here aresome more ideas:

• To encourage and strengthen dignity and self-esteem by providing volunteer opportunitieswithin the stroke group and the community.

• To educate people in the local communityabout stroke prevention and stroke disabil-ities.

• To reach out to new stroke survivors and theirfamilies by providing a support service suchas the American Stroke Association’s PeerVisitor Program.

• To improve communication and understandingamong stroke families.

• To offer support uniquely designed to helpstroke family caregivers.

• To encourage the active involvement ofsurvivors with aphasia who have difficultycommunicating in the group.

• To reach out to stroke survivors in commu-nities without active stroke support groups.

Getting Organized

Starting a stroke support group takes a lot of workbut can be very rewarding. It’s extremely satisfyingto help stroke families rebuild their lives. Sharingresponsibilities makes getting organized easier andgives others a sense of ownership. Laying a strongfoundation now will also have long-term benefitssuch as dedicated members, widespread publicityand committed leaders.

Contact stroke survivors, family members and strokehealthcare professionals for more guidance. Whenyou talk to individuals or groups, tell them how groupmembers can benefit from friendly, supportive,informal meetings. Once you find two or three inter-ested people, you’re ready to take the next steps forstarting your group.

Organizing a new stroke group will be easier if youinclude these components:

• A key person (or two!)

• An advisor, group facilitator or healthcareprofessional

• A sponsoring agency

• A planning committee

How Are Stroke Support Groups Started?

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II

Bright Ideas From Successful Groups

Some ingredients for a viable group...

• A capable planning committee

• Committed leader(s)

• A variety of interesting programs

• Capable volunteers

• Community recognition

• At least one sponsoring agency

• Good planning

Finding Leaders and Facilitators

A key person (or two) is someone who has a primeinterest in organizing a new stroke group. Thisperson may be a stroke survivor, the caregiver of a stroke survivor, or a social worker or otherhealthcare professional from a rehabilitation centeror community services agency. It’s important for this person to be able to commit the time and effortneeded. Whether the key person or the sponsoringagency comes first varies with the community.Typically, a need surfaces and the order followslogically. Direction may be needed, but a strokesupport group will emerge.

The role of an advisor or group facilitator will varywith individual groups and as groups pass throughdifferent stages of development. An advisor can actas an advocate and consultant, especially while thegroup is forming. That role may shift to facilitator orguide as leaders emerge and the support aspects ofthe group become focused.

Both lay and healthcare professional facilitators canshare their unique perspectives. However, thecollective experience and knowledge of the group is more important than that of the facilitator. A goodfacilitator must be able to empower the members tosupport each other. That allows the internalleadership to thrive.

An advisor or facilitator should have a strong interestand ability to empathize with the problems resultingfrom a stroke, and have good group facilitating skills.Enlisting a qualified healthcare professional in thisrole can enrich the group with additional knowledgeof stroke, rehabilitation and group process. A profes-sional’s contacts in the healthcare community can

help members generate support and referrals for the new group, and find speakers and other helpfulresources.

If a sponsoring agency is found first, its staff may beable to recommend an advisor. The advisor’s mainduties are:

• To provide or be the liaison with thesponsoring agency.

• To help manage the group.

• To facilitate the process as the group developsprograms, defines function, promotesleadership among members, and helpsestablish and carry out the group’s goals.

Obtaining the commitment of a recognized organi-zation can be very useful in helping the group reachits goals. A sponsoring agency can also help providecontinuity as the group evolves and its membershipchanges. The agency could be the local office of anational organization, a hospital or rehabilitationcenter, or a community service group. Somepossible organizations that may be interested insponsoring a stroke support group include:

❏ American Stroke Association, a division of theAmerican Heart Association

❏ Nursing homes

❏ Easter Seal Society

❏ Nurses associations

❏ Hospital rehabilitation departments

❏ YMCA and YWCA

❏ Community rehabilitation centers

❏ Outpatient clinic

❏ Speech and hearing associations

❏ Family service agencies

❏ Senior citizens’ agencies

❏ Mental health groups

When you contact these organizations, ask if theysponsor a stroke support group or plan to start one.If there’s an existing group, you may want to visitand ask them to partner with you to start a newgroup. A partnership like this lets you share valuablemember resources.

A sponsoring agency may be able to provide someneeded services — such as meeting space — andhelp with funds for refreshments and mailings. Inaddition, many services and staff of the sponsoring

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Don’t reinvent the wheel

If you are starting a support group, consider consultingwith those who have done it before:

• See the helpful organizations listed in section VI of this guide.

• Call the American Stroke Association Stroke Family“Warmline” at 1-888-4-STROKE (1-888-478-7653)for advice.

• Visit another stroke support group in your community.

• Talk to leaders of other types of support groups in your area.

agency may be available to help the group. Socialworkers, speech/language pathologists, occupa-tional or physical therapists, and other healthcarespecialists can advise or facilitate, or be involvedoccasionally as guest speakers.

Forming a planning committee of three to fivemembers to plan the initial meeting and establishsome basic ground rules and an organizationalstructure isn’t necessary but can be very helpful. Aplanning committee can share responsibility andhelp prevent leader burnout. This fosters a sense ofownership among group members.

Forming a committee to guide your support groupprovides a way for members to be actively involved.It also establishes the group as a stronger entity inthe community. Involving stroke survivors andcaregivers on the committee is essential toassessing the needs accurately and setting appro-priate goals.

Recruiting healthcare professionals for yourcommittee can strengthen its credibility and alsoincrease its visibility. Healthcare professionals arevaluable to you for three reasons:

1. They know people who can presenteducational programs on strokerehabilitation and mental health.

2. They meet stroke survivors daily who arepotential group members.

3. Their knowledge of the community andstroke recovery and rehabilitation benefitsyour stroke support group.

A committee may also be helpful if your group plansto partner with community organizations, such as thelocal American Heart Association office.

How long should your committee serve? That’s up toyou. Some groups never disband their committee.Others use the committee until their support grouphas become stable.

Next Steps

Once you have commitments from one or two keypeople, the next steps are to locate a sponsoringagency, a planning committee and an advisor orfacilitator. Your nearest American HeartAssociation/American Stroke Association office maybe able to help.

Here are some steps adapted from those used bythe American Heart Association/American StrokeAssociation Texas Affiliate office. You can adaptthese ideas to fit your group’s needs.

• Review advantages of developing a strokesupport group in your community with thestroke program committee of your nearestAmerican Heart Association/American StrokeAssociation office.

• Ask the American Heart Association/AmericanStroke Association program committee abouthelping to organize a stroke support groupand whether it would be a sponsoring organi-zation. Review the advantages of involvingother organizations to co-sponsor the group.

• Ask the American Heart Association/AmericanStroke Association program committee to helporganize a stroke group planning committeemade up of healthcare professionals (such asphysicians, physical therapists, speech thera-pists, occupational therapists, rehab nurses,etc.); two or more stroke survivors andcaregivers; and one or two other interestedpersons.

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Groups may have difficulty in thedevelopmental stage because they:

• Lack volunteers.

• Lack attention from coordinators andprofessionals.

• Fail to establish regular meeting times.

A survey of group leaders offered thesesolutions:

• Develop a better business base.

• Ensure adequate funding.

• Get better community support bysponsoring educational programs.


• Form a professional advisory council.

• Involve a multi-disciplinary group.

• Get people to work who are motivated bypersonal interest rather than a sense ofduty.

• Ask the planning committee to help locate asuitable advisor or facilitator for the strokesupport group.

• The committee creates a list of sources fornew members with the planning committee,including physicians, public health nurses,Visiting Nurses Association, rehabilitationhospitals and centers, VA hospitals, etc.Committee members will ask these individualsand organizations for stroke survivor referrals.

• The committee sends invitations announcingthe first meeting of the stroke support groupand publicizes the group.

• The committee may set the date and time formeetings, choose a stroke survivor to lead themeeting along with an advisor, and suggest ameeting location, types of programs andfrequency of meetings.

• Before the first meeting, the temporary groupleader and advisor will meet with thecommittee to develop a detailed meetingagenda. This group can also identify potentialsupport group leaders.

• At the first meeting, the stroke support groupleader and committee will present their ideasto the group. The members present at theinitial meetings will decide how often to meet,the kinds of activities the support group willsponsor and where the group will meet. Anacting stroke support group leader will bechosen if one hasn’t been selected and howlong the term leaders will serve will bedecided.

• File a list of members and guidelinesgoverning your group with your nearestAmerican Heart Association/American StrokeAssociation. The local office may want tosubmit this list to the American HeartAssociation/American Stroke Associationaffiliate stroke group coordinator or the personat the state level with stroke responsibilities.

• Review your group’s activities after six monthsand make any changes necessary.

Finding Members

Stroke support groups use different criteria formembership. In addition to stroke survivors, somegroups include individuals with other medical condi-tions, such as head injury and other disablingconditions. Restricting membership to survivors ofstroke or perhaps other types of brain injury keepsproblems and challenges similar. This allows groupmembers to more strongly identify with one another.Advocates of a broader membership believe thatadded diversity makes for a more interesting group.

Broad membership often attracts more members tothe support group. Your group can include familymembers and friends of stroke survivors, or you cancreate a separate group for caregivers. You maywant to experiment with your membership.

You’ll probably attract enough people to your firstfew meetings. Over time you’ll want to involve morepeople to keep attendance high. Aside from yourpersonal contacts, some reliable sources for newsupport group members are physician referrals,healthcare professionals, public health agencies,social services and the ministry. Community publicityis another way to attract interested members andtheir families.

The first meeting is very important. Allow enoughlead time for extensive publicity so information canbe circulated. The first program should be well-planned, constructive and purposeful. It couldfeature a healthcare professional speaker on a topicdealing with the psychosocial aspects of stroke as itaffects survivors and families. The speaker shouldbe well-qualified and understand the goals of thegroup. Another option is to feature a stroke survivorwho has made a successful adjustment to a

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• Ensure that the core group responsiblefor organizing the new support groupmeets several times before the firstofficial meeting.

• Be realistic about what type of service youcan provide.

• Involve stroke survivors at the outset.

• Visit another stroke support group.

changed lifestyle after stroke and can give aninspiring presentation. The first program should alsohighlight these items:

• Purpose and goals of the stroke group

• Possible organizational structure

• Possible future programs

• Role of sponsoring agency, committeemembers and leaders

• Introductions of those attending with briefbackground information

Be sure that everyone who attends feels welcome.Use nametags and designate some committeemembers as “hosts.” Serving refreshments is amust!

Identifying a Meeting Place

How often and when you hold meetings is up to you.Groups meet weekly, every other week, monthly andeven every other month. Monthly meetings are themost common. Afternoon and evening meetings aremore popular than morning meetings, althoughsome groups do host morning meetings. Mostsupport groups meet on weekdays.

• Choose a convenient time for you and the twoor three people working with you. Later, ifmembers prefer, schedule meetings that aremore convenient for the group.

• Most meetings last 11⁄2 to 2 hours and offerprograms and social time. Your meetingsshould be long enough to offer value andshort enough to avoid being tiresome.

• Meeting in the same place eliminatesconfusion, so scout around to find a conve-nient location.

• Many meeting rooms are free. Personallyinspect meeting facilities before you accept orreject them.

• Choose a safe, easily accessible location withample parking. Notice restroom availability,noise level, lighting and ease of entry in thefacility you’re considering. Policies regardingbuilding hours, janitorial services and refresh-ments will play a big part in your choice. Forinstance, if you want to serve refreshments atyour meetings, consider a meeting facility witha kitchen.

• A clean, cheerful meeting place with plenty ofroom to seat everyone will enhance thequality of your meetings. Possible locationsinclude:

❏ Your local American Heart Associationoffice

❏ Hospitals

❏ Rehabilitation centers

❏ Nursing homes

❏ Easter Seal centers

❏ Adult day care centers

❏ Speech/hearing centers

❏ Senior citizen centers

❏ Civic centers

❏ Churches

❏ Community halls

❏ Libraries

❏ Schools

❏ YMCA and YWCA

❏ Shopping centers or malls (some mallsoffer unoccupied space to nonprofit groups)

Elderly members are often reluctant to drive duringevening hours, on busy highways, or if there is badweather. Some groups don’t meet during the wintermonths because of weather, while others take abreak in the summer when members may be toobusy. Transportation can challenge your strokesupport group, no matter when you schedule yourmeetings. Check your community services andpublic bus service for vans and special trans-portation for members who are unable to drive.Carpooling may be another solution.

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Choosing a name for your stroke groupcan help build group cohesiveness and

a sense of identity. Names range from simple to elaborate: Bethesda Stroke Support Group to Stroke Victors, Rebounders, Speak-Easy,Different Strokes, and Victory Over Stroke. Yourplanning group can choose a name, or you canlet your first group members take part in theselection. However you do it, make it a fun, light-hearted project.

Acquiring Funds for Activities and OtherExpenses

Funding for stroke groups can vary greatlydepending on whether a local organization hasagreed to sponsor the group and its activities.Consider working with an organization or collabo-rating with your local American Heart Association formeeting space, use of equipment, refreshments,postage…in exchange for the members’commitment of their time to volunteer when help isneeded for local stroke outreach events.

Support groups report these main expenses:

• Publicity-related: printing, copying, postage,advertisements

• Group bulletin or newsletter

• Refreshments

The group should make the decision to collect or notcollect fees. Some groups collect $1.00 annually,quarterly or monthly. Stroke groups report that themoney is used mostly for refreshments. If youcharge any fees, remember that some membersmay not be able to pay. You may consider fund-raising projects once your group is strong enough.These projects can finance events that build bondsamong members.

Regarding Stroke Groups

Here are friends — people who do not shy away from usbecause they are uncomfortable trying to communicate with us.They have experienced, in varying degrees, the same anxieties,frustrations, anger, hopes and despair we have. Here are peoplewho can truly share our feelings when we are “down” as wellas the elation of victory when progress, however small, is made.We see others who are even less fortunate than we are and itmakes us thankful. We see the accomplishments of those whohave worked hard and long to make it to where they are, and itinspires patience. We see the cheerfulness and courage of thosewhose lives have been devastated in a manner similar to ours,and it gives us hope.

(An excerpt from “Odyssey” by Inez Thoren, caregiver, Stroke ConnectionMagazine November/December 1983)

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Developing Opportunities for ProvidingCaring Support

Sharing concerns and supporting each other are atthe heart of any successful support group. Commonexperiences and challenges will draw stroke familiestogether. But it doesn’t just happen. It’s a processthat needs to be facilitated or “helped along.” Thegroup leaders and facilitators can set an example byinstructing members in what is needed to develop awealth of sharing and support. Three necessaryelements are discussed in this section.

• Making careful word choices

• Establishing group guidelines

• Using good listening skills

Making Careful Word Choices

How stroke survivors speak of themselves and howothers refer to them can affect how survivors think ofthemselves. The terms “stroke survivor” and “strokevictim” are an example. “Stroke victim” impliesweakness and illness, while “stroke survivor”focuses on a person’s resilience and hopefulness.Surviving a stroke and working at rehabilitationrequire strength of both body and spirit. Using theterm “stroke survivor” recognizes that.

Many other words are commonly used by healthcareprofessionals and also stroke families, but they maybe perceived as negative and demoralizing. The listof words below can help group members discusstheir own perceptions and work at expressingthemselves in a supportive and empoweringmanner.

Establishing Group Guidelines

Setting up a number of guidelines for your strokesupport group can establish the pattern for encour-aging, helpful interactions at meetings. Objections tosupport groups raised by healthcare professionals orreluctant stroke survivors can be addressed byestablishing group guidelines. Guidelines canreassure potential members who may be wary ofbeing pushed to share more, or who fear informationwon’t be held in confidence. Guidelines can alsogive the leader or facilitator a way to gently remindmembers of appropriate ways to interact with eachother. Here are some potential group guidelines:

• Recognize and respect that every strokesurvivor is unique in their injury, experience,way of coping and goals.

• A successful stroke group is a group effort.

• Information shared in meetings must be keptconfidential.

• All members must be encouraged to share, orto listen, when they like, and to try to activelylisten when others are talking.

• All members are expected to be non-judgmental in their responses and to berespectful of other members.

• Attempts to “fix” the problems of othermembers are inappropriate, but “listening ishelping.”

• Good listening skills help and encourageeveryone.

How Do We Make Our Stroke Group a Success?

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III

A Language of StrokeWord Choice Exercise

YES WORDS NO WORDS

• stroke survivor • stroke victim orstroke patient

• experienced a stroke • suffered a stroke

• brain injury • brain damage

• stroke deficits • handicaps

• challenges • difficulties

• a person with a disability • crippled

• caregiver/care partner • caretaker


• Hold training sessions for the strokesupport group leaders.

• Stay current on stroke-related issues.

• Build and maintain a volunteer pool largeenough to ensure that one person doesn’thave to bear all the responsibility.

• The stroke group meeting does not takethe place of medical care, and we don‘tgive medical information to each other.

Sharpening Your Listening Skills

The value of support and sharing in a group rests in members offering true, non-judgmental empathyand understanding. The great variety and magnitudeof losses and concerns shared in a stroke supportgroup can be challenging to members. Some willseem overwhelming and others small compared to what individual survivors have had to deal with.

The survivor expressing sadness over her inability to wear high-heeled shoes is not comforted byfriends who comment that “it’s no big deal.”However, a fellow survivor’s reply of “I was alsoupset when I found I could not wear dressy shoeswith a nice outfit, because it changed my wholebody image,” allows the survivor to share that smallloss and move past it. The key is to remember thateach stroke is different, and each survivor and familyhandles them differently.

Communicating in a Language of Support

Basic listening skills are crucial. They give groupmembers the ability to be helpful to other strokefamilies without trying to fix their problems or giveadvice. These skills provide a “language of support”for members who want to help each other. Membersmust internalize the message that “listening ishelping” and understand that the goal is to helpothers through the process of grieving their ownlosses.

Group members should be told that negativeresponses are all too common in the normal conver-sations we hold with friends and family. They oftencause anger, sadness and disappointment over ourlack of “communication.” Unfortunately, groupmembers can do harm if they fail to use basiclistening skills. Facilitators can remind participants ofconversations they had after their strokes thatfrustrated them or raised false expectations.Learning basic listening skills will give membersreliable skills to cope with even the most challengingstroke group discussions. The goals of learning thelistening skills are:

• To encourage the person to share informationand feelings.

• To show your interest and caring.

• To show you understand what you’re hearing.

• To learn to be cautious before confrontingindividuals or giving advice.

• To stay focused on the other person’s storyand feelings.

• To respect the stroke family’s feelings andvalues.

Practicing Listening Skills

Listening skills instruction should be done bymodeling the skills, paying attention to howmembers communicate and encouraging them touse the basic skills. Listening skills combine listeningwith prompting the group member to shareconcerns, resolve issues and plan for the future. Thegoal is to listen without bias and with respect for thespeaker. Confidentiality should always bemaintained. An exception would be someonequalified to help share concerns about the safety ofthe speaker.

These basic listening skills give the leader or facili-tator a way to gently remind members of appropriateways to interact. Discuss these skills during groupmeetings and practice them. Make sure memberscan recognize when they aren’t upholding helpfulqualities and standards. Using these skills willincrease the group’s effectiveness and will enhancethe support that members receive. Good listeningskills are your best assurance that the strokesupport group will provide a safe environment and ahelpful service.

Providing Basic Instruction

The listening skills aren’t complex. However, manystroke survivors and family members have difficultyabandoning old ways of communicating, particularlyin a stressful situation. The skills are designed to betaught gradually and reinforced repeatedly. Manystroke survivors need time to assimilate and processthe information, and then to incorporate it into theirinteractions in the support group.

The basic listening skills information that follows willhelp the facilitator introduce the concepts and leadclass discussion. The facilitator should read andstudy them before introducing them to the class.

More detailed information on listening skills iscontained in the American Stroke Association PeerVisitor Program kit. It includes detailed instructions,demonstration exercises and practice exercises. The PVP kit is available by calling the AmericanStroke Association Stroke Family “Warmline” at 1-888-4-STROKE (1-888-478-7653).

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A Personal Experience With the Stroke SupportGroup

“The courage I have witnessed, the depth of feeling in whichI’ve shared, and relationships I’ve established have allowed meto grow both personally and professionally. I have enjoyed theexperience immensely and would recommend it to anyone as avery rewarding challenge.”

(An excerpt from “Stroke Group Development” by Mary Ellen Mussman, StrokeConnection Magazine, September/October 1993)

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14

Languageof Support

…basic listeningskills forvolunteers toremember.

1. Concentrate on what the otherperson is saying……not on what you want to say next.

2. Encourage the person to shareinformation and feelings.Ask questions that say “I care.”

3. Show support and caring.“You’re doing the best you can.”“It’s not easy, I know.”

4. Show you understand what youheard.Respond with, “What I’m hearing yousay is…”“Did you mean that you want to…?”“You seem concerned about…”

5. Use non-judgmental responses, notput-downs.“Every stroke is different.”“I see what you mean.”“Families handle things in differentways.”

6. Listening is helping. Listening isENUF*!E EmpatheticN Non-judgmentalU UnderstandingF Focused on feelings

*This information was adapted from: Rogers, Carl. ClientCentered Therapy, Riverside Press, 1960; and others.

STOP

CAUTION

GO

• Do not give advice.

• Do not correct, confrontor judge others.

• Do not deny or devaluethe feelings of others.

• Avoid comparing stroke stories.

• Only talk aboutyourself to showempathy with others.

• Ask caring questions.

• Support by listening.

• Provide encouragement.

• Offer options, helpfultips and resourceinformation.

Staying Flexible

Self-help organizations report that people are drawnto groups that provide emotional support and asense of community. Resist the temptation to plan afull agenda of programs too far ahead or bookprofessionals as speakers too often. This can makeit hard for the group or the leaders to respond tomembers’ needs. It’s important to be flexible and totry for a balance in the type of programs offered.Time for sharing concerns, addressing problems andcelebrating accomplishments is essential to devel-oping a sense of caring and togetherness.

Striving for Balance

Educational goals and timely information areimportant. A good speaker and/or educationalvideotape can do the job. If you follow an educa-tional program by a few carefully chosen questions,it can turn into a lively discussion and meet dualgoals. Remember, schedule social time for getting toknow each other and sharing.

Occasionally the group just needs a change of paceand a break from focusing on stroke. A familypotluck meal, entertainment or a group outing canalso stimulate new topics and new ways of helpingeach other. Stroke survivors can be encouraged totry things with the group that they might not try ontheir own, such as warm-water exercise or bowling.Stroke support groups can play a vital role insurvivors’ lives by providing new challenges andopportunities. Group members gain confidence afterthe initial period of adjustment. They may wish toextend a helping hand to others by educating theircommunity or getting involved in stroke advocacyissues.

Involving Members in Planning

Support group leaders are often encouraged toinvolve group members in program planning, but this may not be easy to do. At first it may be difficultto solicit ideas as a group. Group leaders may feelpressure to “produce” large attendance numbers at the early meetings and may still be seeking that“core of regulars” to stabilize the group. It’s important to assess the group membership, needsand “moods” often to find information for tailoringmeetings to their needs. But at first it may be easierto poll members individually. Ask them at a timewhen they can answer honestly and thoughtfully. Be sure you hear from everyone, not just the most

vocal members. Make an effort to communicate withsurvivors who have aphasia and people who don’treturn after a meeting or two. As the stroke groupgrows and matures, this process should becomeeasier and possibly more of a group activity. Somequestions to consider:

• What did you like about the last meeting?

• What was the most helpful?

• What would you change?

• Do you feel welcomed at our meetings?

• Do you feel comfortable at our meetings?

• Are you feeling supported by the group?

• Is there enough time for visiting and sharing?

• Do you feel we are meeting our goals?

• How can we improve the service we are tryingto provide?

Keeping Your Goals in Mind

Planning programs and involving members in theprocess may seem challenging at first. However,once the group becomes established, the ideas may be many and the time too short. The group’spurpose and goals should provide a starting pointand offer focus for planning programs. It’s often easy to lose sight of purpose and goals when thegroup meets only once or twice a month and theprogram suggestions begin to flow. The purpose and goals should be reviewed often and updated as needed, as the membership and their needschange. When the common needs and goals areclear, it becomes easier to design interesting andsuccessful programs.

Regarding the True Purpose of Support Groups

The personality of our group promotes warmth, sharing andwell-being. Though the group provides opportunities to sharehardships and concerns, the focus is more often celebratingsuccesses and supporting strengths.

(An excerpt from “Stroke Group Development” by Mary Ellen Mussman, StrokeConnection Magazine, September/October 1993)

Providing Structure for Meetings

Support groups vary greatly in how they format theirmeetings, but most leaders find having a certainamount of structure to each meeting helps create anatmosphere of comfort and acceptance. Having a

What Type of Program Activities Should We Plan?

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IV

regular format with certain predictable elementseach time is reassuring to group members. A reliablestructure can be a reminder of the group goals andensure that time is set aside for what’s important. Astructured meeting format also makes it possible tocreate distinct roles so members can be moreactively involved.

Formats can vary from a formal, business-likemeeting with officers reporting old and newbusiness, to those that simply begin with introduc-tions and end with “See you next month!” Thedanger of too much “business” is a lack of time forsharing and support, and a loss of focus on thegoals of the group. Too little structure can result inno sense of purpose or group cohesiveness. Againthe goal of the leaders is to balance the needs anddesires of the group members.

Here are some ideas to consider. Allow thesesuggestions to stimulate your own ideas, and you’llhave no trouble developing a format for yourmeetings.

Group Business Items

• Welcome and introduce members and guests

• Announcements

• Read group purpose and goals

• Review group guidelines

• Highlight minutes from last meeting

• Financial report

• Social activities report

• Program planning time

• Community service planning

• Topic for following month’s program

• Old or new business

Social Elements

• Share “milestones” such as birthdays andanniversaries

• Informal visiting time with refreshments

• “Icebreaker” exercise

• Share accomplishments — large and small

• Exchange of helpful resources andinformation

• Share inspirational quotes or readings

Meeting Program

• Facilitator or guest speaker presentation

• Planned discussion topic — large or smallgroups

• Videotape presentation

• Interactive group exercise

• Entertainment or social activity

• Group community outing

Beginnings and endings of any group get-togethercan have a tremendous impact on the mood of thegroup. A warm welcome sets a tone of acceptanceand helps members feel comfortable. An encour-aging and upbeat send-off will leave members with a good impression and encourage people to return.Some group leaders like to open with an exercisethat helps members get to know each other (an“icebreaker”). A review of group goals and guidelinescan also serve to “warm up” the group and remindthem why they are there. Efforts to end on a positivenote can be facilitated by sharing accomplishmentsor perhaps an inspirational quote or reading.

Regarding the True Purpose of Support Groups

The Peoria, Illinois, support group asks the followingfive questions at every meeting:

1. Who has a birthday this month? (Celebrantsstand and share the date, but they don’t have toreveal their age!)

2. Who has a wedding anniversary this month?(Couples stand and share wedding date and howlong they have been married.)

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• Gear your meetings to the needs of themembership.

• Avoid becoming too formal in structure.

• Don’t elect officers until after the first year, if you choose to have officers.

• Provide refreshments at meetings.

• Be well prepared and well organized beforethe group starts.

• Provide time for members to mingle, talkand get to know one another.

3. Who has made some improvement in theirphysical condition this month? (Membersstand to demonstrate their improvement.)

4. Who has done something for the first timethat your spouse or caregiver once had todo for you? (This is an important milestone forthe stroke survivor and caregiver.)

5. Has something funny happened since yourstroke? (Humor is important for everyone, butparticularly for stroke survivors. The groupleader has a story ready, if no one has aresponse.)

Deciding on Educational Programs

In the changing world of healthcare, people spendless time in the hospital, in rehabilitation, and withtheir doctors. This makes education about strokerecovery and rehabilitation — and strategies for self-care and self-advocacy — increasingly important.

Educational programs are generally well attendedbecause they give members practical information.They also tend to be non-threatening to people whoare still uncertain if a support group is right for them.Having outside speakers may bring in largenumbers, but the group can lose the intimate atmos-phere needed to foster sharing and support.Remember to balance educational presentationswith time for discussions and sharing. Here aresome suggested topics:

Health-Related Topics

• Stroke rehabilitation presented by a variety ofmedical practitioners: doctor; RN; speechpathologist; physical, occupational andrecreational therapist; psychologist; socialworker; or dietitian

• Continuing to improve skills after rehab ends• Impact of stroke (profiles in courage)

presented by stroke survivors and theircaregivers

• Stroke educational videos

• Adaptive equipment

• Stroke causes and up-to-date medical,surgical and rehabilitative care

• Physical management of stroke survivors athome and therapeutic services

• Medical questions and answers on theprevention of a recurrent stroke

• Pharmacist on medications, side effects,interactions, record keeping

• Controlling high blood pressure

• Home exercise programs

• Warm-water exercise

• How right and left hemisphere strokes causedifferences in behavior

• How to help someone with aphasiacommunicate

• Cerebral physiology, with discussion ofparalysis and paresis, seizures and anti-seizure medications

• Low-sodium, low-cholesterol and diabeticdiets and healthy holiday party foods

• Drug and non-drug therapies

• Sexual functioning and intimacy after stroke

Psychological Issues

• Emotional responses to stroke and changedself-image

• Death and dying (Compare responses offamilies with terminally ill patients with strokesurvivors.)

• Coping with stress

• Recognizing and treating depression

• Dealing with anger

• Spirituality

• Coping with stroke issues — survivor andcaregiver perspectives

• Relaxation techniques

• Meditation lecture

• Psychological factors of chronic disabilities

• Communication and interpersonal familyrelationships

Legal and Financial Issues

• Financial impact of stroke presented by afinancial advisor, lawyer or Social Securityrepresentative

• Legal rights of people with disabilities

• Employment issues

• Volunteer opportunities

• Health insurance and Medicare

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• Information on Living Wills

• Social Security

• Estate planning

General

• Presentations by representatives of a localhealth department, civic groups, police, fire orsheriff departments, and other communityresource groups

• Safety for seniors

• Travel and nature films

• Book reviews

• CPR and/or Medic Alert programs

Finding Guest Speakers

Locating speakers sensitive to the needs of strokesurvivors and their caregivers is easier today,because more national attention is focused onpeople with disabilities. When selecting guestspeakers, be sure they can interact effectively withstroke survivors. Prepare them with information onthe group’s disabilities and concerns. Considertapping into the American Heart Association’s andthe American Stroke Association’s online resources.Planning is the key to having interesting programs.Many groups plan their educational programs sixmonths to a year in advance. Have a few contin-gency programs ready in case your speaker can’tcome. Your local library is a good resource forprogram content.

Meeting Special Needs

Each group member should be asked if they haveany special learning challenges or needs. Largerprint handouts and audio recordings of the readingmaterials are two ways to help stroke survivors withthese special needs. If audio recordings are notpossible, a survivor with aphasia might ask theirspouse or a friend to read the materials to them.

Flip charts, slides and overhead transparencies helpteach stroke survivors. Many need to “hear and see”what the presenter is saying to understand thematerial. Some stroke survivors may have troublefollowing a film or video and would benefit fromseeing it more than once. Arrange for them to viewthe video at home as often as needed.

In addition, all of the speakers could be audiotapedor videotaped. This gives members who could not

attend a meeting a way to review the material.Encourage members to audiotape the presentation ifthey’d like to refresh their memories later.

The American Stroke Association is a good sourceof educational materials. Written materials includeLet’s Talk About Stroke, a set of 19 informationsheets on topics of interest to stroke survivors andtheir families. Booklets on aphasia, behavior afterstroke and sex after stroke are available along withmany others. A series of four educational strokevideotapes on support and rehabilitation is available.Call the American Stroke Association Stroke Family“Warmline” at 1-888-4-STROKE (1-888-478-7653)for more information.

Planning Social Activities and Entertainment

These events can meet members’ need for fun andoutside activity. Sometimes the group just needs totake a “breather” from focusing on stroke. Here aresome ideas for group activities to help you developyour own list. Outside events like these foster amore active and involved support group.

Just-for-Fun Group Activities

• Music performed by a community group

• Group birthday party

• Family potluck meal — each bring a healthydish to share

• Restaurant meal

• Organized group games

• Field trips to museums, sports events, shows

• Picnics

• Holiday theme parties or outings

• Card playing

• Singing

• Visit other stroke support groups

Challenging Stroke Survivors

Stroke survivors may have many physical andemotional difficulties to overcome. These can giveyou opportunities to challenge the members of yourgroup. Challenging stroke survivors in the groupsetting can help them regain confidence andbecome bolder about trying new activities on theirown. Often an old hobby or interest can be revivedwith a little adaptation or a lot of practice. Plan someprograms to enhance members’ leisure time or helpthem find ways to stay physically active. Many times

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no one asks a stroke survivor to do anything,because they assume the survivor can’t. But no onegets better unless they are challenged. That is whatrecovery is about. Use the ideas below to stimulatethe imagination and try something new.

• Golf

• Bowling

• Warm-water exercise

• Fishing

• Camping

• Journal writing

• Art therapy

• Music appreciation

• Arts and crafts with adaptive techniques

• Dance classes

• Horticultural and gardening tips for strokesurvivors

• Photography

Encouraging Group Discussion and Peer Support

Opportunities to share concerns and to support eachother are an integral part of any successful supportgroup. For a stroke support group to truly besupportive, these elements are needed:

• Time for sharing

• Trust

• Good listening skills

Time for sharing must be set aside as a grouppriority. Allow enough time for everyone who wishesto participate. Recognize that smaller groups of 6–12people are generally more conducive to sharing.Consider providing space for a larger group to breakinto several smaller ones. If family members attend,it helps if you encourage separate and privatediscussions whenever possible.

People offering personal information and insightsneed to be reassured that their opinions will berespected and what they say will be kept confi-dential. Some people are uncomfortable talkingabout anything personal, and their reluctance mustbe respected. Section III discusses setting groupguidelines to help members and leaders establish asafe, comfortable process for group sharing.

Once members feel comfortable and trust the group,both the range and magnitude of losses and

concerns they share will increase. So will thechallenge to group members who truly want to helpbut don’t know how. The basic listening skills sharedin Section III can help leaders, facilitators and groupmembers provide what is needed to develop awealth of sharing and support.

The list of “Psychological Issues” topics found underEducational Programs on page 18 can be a startingpoint for finding appropriate ideas for discussiontopics. To facilitate helpful sharing, the focus shouldbe on group members’ feelings.

Extending a Helping Hand

Stroke survivors generally lose their communityconnection through loss of jobs, social affiliations andformer responsibilities. With these connections gone,they easily lose a sense of their value to thecommunity. The stroke support group can strengthenmembers’ self-esteem by helping stroke familiesview themselves as educators and advocates whoextend a helping hand to the local community. Strokesurvivors and caregivers can have a great impact onlocal efforts to spread the word about stroke.

Consider these activities for more stroke groupcommunity involvement:

• Find out if there is a Train To End Stroke teamin your community.

• Volunteer at your nearest American HeartAssociation/American Stroke Association towork at the registration table for a Heart Walkor local gala.

• Volunteer to work at a display with educationalmaterials about heart disease and stroke.

• Set up an informative meeting on stroke forthe general public or the staff of a localhospital.

• Offer to serve as “practice patients” forstudents of speech, occupational or physicaltherapy.

• Assist with mailings or other American HeartAssociation/American Stroke Association officeduties.

• Assist at school events. Children aren’t afraidto ask stroke survivors about their condition.Survivors can deliver great messages tochildren about health, smoking and nutritionhabits.

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• Ask your leaders to visit with the executivedirector of the local American HeartAssociation/American Stroke Association andoffer to serve on the board or committees.

• Distribute American Stroke Associationbrochures and materials at health fairs.

• Get involved in service projects for hospitals,nursing homes, orphanages, and charitable orservice organizations.

• Organize a stroke risk screening. This is ageneral assessment of someone’s risk ofstroke determined by a blood pressurescreening and assessment. The AmericanStroke Association has a kit to help you planand conduct stroke risk screenings.

• Maintain a speaker’s bureau so members canspeak at local civic groups and spread theword about stroke prevention. Programmanagers will love it.

Contact your nearest American HeartAssociation/American Stroke Association for a list of stroke-related materials and products or call 1-888-4-STROKE.

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Regarding attendance andmembership, group leaders give the

following advice:

• Increase the quantity and quality ofpublicity regarding your support group.

• Break into small groups if your group is toolarge.

• Provide transportation and parking forgroup members.

• Avoid long programs (more than 11⁄2 hours).

• Establish better relations with physiciansand encourage their input.

• Ask support group members to visit strokesurvivors who are hospitalized. Add theirnames immediately to your mailing list andfollow up the visit with a note or card.

• Encourage stroke survivors to visit yourstroke support group before they aredischarged from the hospital.

• Appoint host couples for each meeting tomake new members and guests feelwelcome.

• Keep an up-to-date prospect list formembership.

• Make personal contact with strokesurvivors’ family members.

Watching Group Members Come and Go

Attendance is a constant concern for many strokegroups. The numbers can fluctuate for no apparentreason, and members who seemed dedicated maystop attending. There are many reasons peoplemiss meetings, and well-established groups reportattendance challenges identical to those that newstroke support groups face. Poor health, trans-portation problems and generally stressful familysituations can contribute to low attendance rates.

Surveys of members attending regularly and thosewho come and go may give useful information youcan use to address the problem. Most groups sayregular attention must be given to recruiting newmembers and retaining current ones. Above all,remember that numbers don’t tell the whole story.An active, vibrant group doesn’t need largenumbers. Here are common challenges to memberrecruitment and attendance:

• Lack of publicity and awareness of the group.

• Lack of transportation for members who can’tdrive to meetings. This includes reluctance ofsome stroke survivors or their spouses todrive at night or in bad weather.

• Lack of doctor’s referrals for new members.

• Attracting members to meetings.

• Determining membership makeup of thegroup.

• Too many members (very rare).

• Overcoming initial negative reaction by strokesurvivors and their families to joining a groupof people with physical disabilities.

Reaching Out to New Members

To ensure your group’s future, recruit, Recruit,RECRUIT! Do it constantly. Show sincere interest inpotential members by calling them and sendingthem meeting notices and support group news.Perhaps the most common (and most effective)recruitment method is having a group member who’shad a stroke tell another person about the group.Enlist group members to scout out prospects andbring them to your meetings. Stroke survivors oftenmake prospective members feel less self-conscious.This kind of sensitivity can help your group thrive.

Will Our Stroke Group Continue To Grow?

22

VA WEALTH OF IDEAS TO SHARE

Variety Is the Spice of LifeHaig Selian, a caregiver in Naples, Florida, started

the Busy Strokers Stroke Group after his wife's stroke.Over the years he has developed a simple strategy formaintaining interest in the group: Do somethingdifferent!

If you like your meetings sedentary or sedate, don'tcall Haig – the Busy Strokers do something new everyweek.

There is so much variety, especially since they meetevery week, that everybody can participate insomething sooner or later. They have done everythingfrom bowling to putting, dog tracks to deep-sea fishingand cruising. Don't try that in Kansas!

It's helpful to remember that you don't have to satisfyeverybody all the time. The larger the variety, the morepeople will ultimately be attracted.

A Night on the TownStroke group leader Marie Tolly in Louisville,

Kentucky, combines a little culture with a lot ofcamaraderie with a group activity she sponsors throughthe Care and Share Stroke Group. Every month sheand her group sponsor an evening of dinner theatre.

Everybody goes to the same show, so they get agroup discount. The theatre, of course, benefits, but itsstaff also have learned how to deal better with disabledpeople. Although stroke group members always attendthe same dinner theatre, each event is independentlyorganized, so the responsibility for putting the eveningtogether gets passed around.

This is a great thing for stroke survivors, because itgets them out of the house and away from the TV andputs them into a public arena. This is invaluable for theirrecovery.

Putting Them to Use

Stroke survivor Jim Faust in Alabama has found agood use for politicians – invite them to stroke groupmeetings! So far he has invited the mayor and severallocal legislators to talk to his group, but he has anulterior motive: education. There may be no quickerway to educate a politician or public servant to theneeds of survivors than by attending a stroke groupmeeting. The discussion periods of these meetingsbecome a two-way dialog: The officials learn strokesurvivors' concerns when it comes to accommodationsand Medicare, and group members learn aboutgovernment priorities and processes.

These meetings give elected representatives a muchclearer view of what it is like to live with a disability.Besides that, stroke survivors and their caregivers areconstituents, too, and their voices need to be heard.

Personal contact generates the greatest interest, somost groups simply produce a flier, descriptivepamphlet and a newsletter. Consider occasionalvisits with the communications director at yournearest American Heart Association/AmericanStroke Association office. You may find opportunitiesthere to promote your stroke group’s activities. Youmay be able to provide the American HeartAssociation/American Stroke Association office withmedia opportunities and ideas to help integratestroke into their programs, events and activities.

There are many ways to publicize your group.Newspaper and magazine articles have beensuccessful in gaining the public’s interest and stimu-lating potential members to attend a group meeting.Other media, such as TV and radio, can give yourgroup added exposure. Consider these ways torecruit new members:

Personal Contact

• Word-of-mouth is one of the most effectiveways to spread information.

Newspaper

• An announcement sent to a newspaper canbe very short, although a larger amount ofinformation can be printed in the paper ifspace allows.

• The smaller community or neighborhoodnewspapers may be willing to print moreinformation than larger ones.

• If your group has one or more sponsors, theymay be able to help you generate this form ofpublicity. For example, a staff person at asponsoring agency will probably have a list ofmedia contacts. (That’s another good reasonfor you to work with a sponsor as youorganize your group.)

TV and Radio

• Local TV channels or radio stations usuallyproduce community-interest programs whereyour stroke group meetings can beannounced each month.

Other Media

• Invitations given to stroke patients byhealthcare professionals

• Letters

• Telephone calls

• Posters

• Bumper stickers

• Seminars

• Referrals from the local American HeartAssociation or Easter Seal Society

• Community program announcements

Keeping Members Informed and Involved

If you want loyal group members, find relevant jobsfor them to do. When members are involved inrunning the group, it becomes more “their group”and they will take on more responsibility. Somegroups have officers, committees and sponsoringagencies. Some rely on professional staff toorganize their programs. Others are directed by acommittee. Clearly spell out the areas of responsibil-ities for your group, decide how people will beselected and how long they will serve. Committeescan carry out many duties like telephoning potentialmembers, sending cards and letters to members,keeping a group scrapbook, membership records,producing a newsletter, program planning, publicity,refreshments, social activities and visitation.

Every aspect of a stroke support group presentsopportunities for recovery. Survivors can gain self-esteem with each step while doing something thatlets them see the fruit of their labor.

If you’re having difficulty with attendance ormeetings, consider these ideas:

• Promote interaction among membersbetween meetings.

• Start a telephone committee to call membersand remind them of upcoming meetings.

• Organize a transportation committee to bringmembers to the meetings.

• Produce a newsletter.

• Involve members on a program committee toplan programs, activities and other events.

• Identify candidates for leadership roles.

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Here’s the bottom line on improving attendance andretaining membership in your support group:

• Make the group indispensable in the lives ofyour members by challenging them in waysthat society as a whole will not. You neverknow what people can do until they’reasked. Experience shows that the strokesurvivors who transform their lives are theones who are progressively challenged todo more than they’re doing.

Consider these methods of communicating withmembers:

Pamphlets and Newsletters

• Consider a newsletter or a one-page factsheet about your group.

• Newsletters are a popular form of publicitybecause they’re more personal than newspapers, TV or radio. See Section VI ofthis guide for resources on publishing a groupnewsletter.

Bulletins

• A bulletin could list the name of your strokegroup, where your meetings are held, thetime and date of your meeting (for example,the fourth Tuesday of the month), and acontact person and phone number.

Finding the Secret Formula for Success

If there’s a secret formula for stroke group success,it’s flexibility. Determine what the members want,survivors and caregivers alike. Take into account thelevels of disability, then give your members whatthey need to get what they want. Like in a one-roomschool, the more experienced members help thenew arrivals.

A survey of stroke support group leaders discoveredthese ingredients in their formulas for success:

• Members’ interest and enthusiasm, the singlemost important factor

• Members’ positive attitudes about theirsupport group

• Friendships among members

• Maintenance of strong core groups

• Members that care for one another

• Motivation and persistence

• Focusing on successes rather than failures

• Recognition of members’ accomplishments

• Sharing experiences

• Making members feel needed

• An inspirational group leader

• Spouses’ support of the group

You may not find your own workable combination ofingredients overnight, but the process should be halfthe fun!

Regarding That Special Day of the Month

“On one day of the month we look forward to seeing and beingwith these gallant people. Oh yes, the wide variety of programsmakes it interesting, informative, inspiring and entertaining. Butit is the people who draw us to this group — we see the warmthof their smiles when we greet them, to feel the squeeze of ahand and know the empathy and love which prompt it, to sharea small moment of triumph in our own or someone else’sodyssey — this is what makes stroke group the supportive andhelpful occasion that makes that day special on our calendareach month. Blessings on stroke groups!”

(An excerpt from “Odyssey” by Inez Thoren, caregiver, Stroke ConnectionMagazine November/December 1983)

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• Create a buddy system to foster caringcommunication among members andhelp new members feel at home.

• Acknowledge all members for thecontributions they make.

• Increase family involvement.

Note:

This information is provided by the American StrokeAssociation as a resource list for our readers. Theorganizations, associations and foundations listed are not owned or provided by the American HeartAssociation, with the exception of the American Stroke Association, a division of the American HeartAssociation, and American Stroke Association itself.Additionally, the organizations may not have beenevaluated, so this list should not be construed as arecommendation or endorsement by the American Stroke Association.

National ResourcesWe at American Stroke Association are dedicated to giving you a helping hand. The Stroke FamilySupport Network serves as a resource for the mostup-to-date stroke information. We also want to shareinformation about some of the many organizationsthat have resources available for stroke supportgroup leaders. Many are a toll-free phone call away.We urge you to keep this list and use these organi-zations as often as necessary. And, of course, if you want that one-on-one attention from someonewho has been in your shoes, call the AmericanStroke Association Stroke Family “Warmline” 1-888-4-STROKE (1-888-478-7653).

American Stroke Association,(a division of the American Heart Association)Stroke Family “Warmline”7272 Greenville AvenueDallas, Texas 752311-888-4-STROKE (1-888-478-7653)www.StrokeAssociation.org

A toll-free referral and information line, free strokematerials, daily living tips, referrals to stroke supportgroups, a national stroke support group registry, andthe award-winning Stroke Connection Magazine.The Stroke Family “Warmline” also offers a variety ofeducational support services for stroke survivors,caregivers, family members and healthcare profes-sionals.

GeneralAmerican Association of Retired Persons(AARP)601 E Street, NWWashington, DC 20049800-424-2277www.aarp.com

AARP provides information relating to aging andsenior citizens. It also has literature for a variety ofhealth and benefit questions important to seniors.

U.S. Department of Health and HumanServicesPublic Health Service – Agency for HealthCare Policy and ResearchP.O. Box 8547Silver Spring, MD 20907-8547800-358-9295www.ahrg.gov

Governmental publications are available on a varietyof stroke-related topics, including the widelyacclaimed Post-Stroke Rehabilitation ClinicalPractice Guidelines and Recovering After a Stroke:Post-Stroke Rehabilitation Patient and Family Guide.

Rehabilitation

American Academy of Physical Medicine andRehabilitation1 IBM Plaza, Suite 2500Chicago, IL 60611312-464-9700www.aapmr.org

This is an automated information line that provideslistings of physiatrists in local areas.

American Occupational Therapy Association4720 Montgomery LaneBethesda, MD 20814301-652-2682www.aota.org

This association helps people locate occupationaltherapists in their local areas.

What Resources Are Available To HelpGroup Leaders?

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American Physical Therapy Association1111 North Fairfax StreetAlexandria, VA 22314800-999-2782 or703-684-2782 or www.apta.org

This national organization provides referrals to statechapters.

American Speech-Language-HearingAssociation10801 Rockville PikeRockville, MD 20852800-638-8255 or 301-498-2071www.asha.org

This organization can provide a list of speech thera-pists in your state.

National Aphasia Association

29 John Street, Suite 1103New York, NY 10038800-922-4622www.aphasia.orge-mail: [email protected]

This organization provides information and supportservices for people living with aphasia.

National Association of Social Workers750 1st Street NE, Suite 700Washington, DC 20002800-638-8799 or 202-408-8600www.naswdc.org

This national association provides a list of localsocial workers.

National Easter Seal Society230 West Monroe Street, Suite 1800Chicago, IL 60606800-221-6827www.easterseals.org

This organization helps people with disabilitiesachieve independence by locating funding sourcesto assist with medical and assistive equipment andmedical bills (on occasion).

National Institute of Neurological Disordersand StrokeP.O. Box 5801Bethesda, MD 20824800-352-9424www.ninds.nih.gov

This organization receives funding from the NationalInstitutes of Health and provides clinical informationpackets on stroke.

National Rehabilitation Information Center4200 Forbes Blvd., Suite 202Lanham, MD 20706800-346-2742www.naric.com

This toll-free number provides information on typesof rehabilitation, adaptive devices and other aids forrecovery.

Vocational Services for the Disabled800-222-JOBS

A New York-based service that refers consumers tolocal state offices providing vocational and educa-tional services for people with disabilities.

Caregiver

Eldercare Locator927 15th Street, NW, 6th FloorWashington, DC 20005800-677-1116www.eldercare.gov

A nationwide database that gives caregivers accessto local area resources that provide care to theelderly.

Family Caregiver Alliance690 Market, Suite 600San Francisco, CA 94104415-434-3388(in California 800-445-8106)www.caregiver.org

This organization provides caregiver support andeducational opportunities through research,advocacy, legal consultation and training workshops.

Flying Wheels Travel143 West Bridge St. P.O. Box 382Owatonna, MN 55060507-451-1685www.flyingwheelstravel.com

This for-profit travel agency provides worldwidetravel assistance for the disabled for leisure andvacation purposes only.

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National Council on Aging409 Third Street SW, Suite 200 Washington, DC 20024800-375-1014www.ncog.org

This organization provides lists of communityresources that help improve the quality of life for theelderly.

National Family Caregiver Association10400 Connecticut, Ave., Suite 500Kensington, MD 20895-3944800-396-3650www.nfcacares.org

Mental Health

American Association of Suicidology4201 Connecticut Ave., Suite 408Washington, DC 20008 202-237-2280www.suicidology.org

This association provides information on suicide anda referral to the nearest suicide crisis center in yourarea.

American Psychiatric Association1400 K Street, NWWashington, DC 20005202-682-6000www.psych.org

This organization provides information on choosinga psychiatrist as well as research on emotionalillness.

National Foundation for Depressive IllnessP.O. Box 2257New York, NY 10116800-239-1265www.depression.org

This foundation provides information and referrals tothe public about depressive illnesses.

National Institute of Mental Health

6001 Executive Blvd., Room 8184Bethesda, MD 20892-9663800-421-4211866-615-6464www.nimh.nih.gove-mail: [email protected]

This organization is an educational resource for thegeneral public as well as healthcare professionalson the co-occurrence of stroke and depression.

Financial

Medicare Hotline800-MEDICARE800-638-6833www.medicare.gov

Call this toll-free number for information aboutMedicare and financial assistance for persons over65. They can also help find medical specialists inlocal areas.

National Insurance Consumer Helpline110 William StreetNew York, NY 10038800-942-4242

This toll-free number gives assistance withquestions about health and life insurance as well asinformation about individual health insurancecompanies.

Social Security800-772-1213www.ssa.gov

A national toll-free number that provides assistancewith Social Security benefit questions and makesreferrals to local Social Security offices.

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Employment

ADA Helpline — Equal EmploymentOpportunity CommissionP.O. Box 12549Cincinnati, OH 45212-0549800-669-4000

This is a toll-free number for information aboutdiscrimination against people with disabilities in theworkforce.

Higher Education and Training for PeopleWith Handicaps800-544-3284

This is an automated information line that providesinformation on post-secondary education for thedisabled.

IBM’s National Support Center for PersonsWith Disabilities800-426-4832

This is a clearinghouse to help healthcare leaders,agency directors, policy makers, employers,educators, public officials and individuals learn howcomputers can enhance the quality of life in theschool, home and workplace for persons withdisabilities.

Patient Rights

People’s Medical Society462 Walnut StreetAllentown, PA 18102610-770-1670

This organization provides information to makeevery American a smart healthcare consumer.

Children

National Information Center for Childrenand Youth with DisabilitiesP.O. Box 1492Washington, DC 20013800-695-0285www.nichcy.org

This is an information, resource and policy centerfocusing on adolescents with chronic illnesses anddisabilities and the issues surrounding theirtransition to adult life.

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