How to Form a Support Group for Families of Brain-Impaired Adults

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Support or "self-help" groups are formed by people who share common concerns. The groups may be participant-initiated or sponsored by a health care institution, social services agency or nonprofit organization.

A degenerative or terminal illness, or an accident involving a family member, is a traumatic experience for spouse, parents, children and other relatives. Support groups allow those facing the difficult task of daily caregiving to benefit from interaction and support from other people in similar situations.

A support group may work towards mutual problem-solving, coping, dealing with grief and sharing information. Some communities have a network of established support groups; others may have few or none. The following guidelines will assist family members or caregivers interested in forming a support group.

Establishing a Family Support Group

Getting Started

  • Determine the focus of your group (e.g., family members of persons with Alzheimer’s, stroke survivors, children caring for aging parents…).
  • Establish a contact person whose phone number can be used.
  • Enlist the participation of other families in a similar situation, if you know any.
  • Seek assistance from medical experts, social workers, or other clinicians who can provide consultation and meeting space, give presentations or facilitate meetings. Good initial contacts may be obtained from existing support groups, nursing homes, hospitals, family physicians, neurologists, counseling and home care services, Adult Day Care programs, senior centers, and local branches of national organizations such as the American Heart Association, the Alzheimer’s Association, or the Brain Injury Association. Make sure to leave your name, address, and phone number when contacting professionals or agencies so that they can make referrals to your group.
  • Plan a time, place and agenda for the first group meeting.

Marketing

  • Publicize the group by distributing press releases to local newspapers and by posting announcements on community bulletin boards in churches and synagogues, libraries, clinics and senior centers.
  • Design an eye-catching flier.
  • Try to get a human interest story into the media to help focus community awareness on the problems and to locate families in need of support.
  • Talk to local radio and TV stations. You may be able to submit short public service announcements which are typewritten or taped. There is no charge to nonprofit organizations. Announcements should describe the nature of the support group, the time and phone number for more information.

Structure, Goals and Group Process

The group must determine certain procedural and philosophical matters, including:

  • How often should the group meet?
  • What times are convenient?
  • Is the meeting site accessible?
  • Who will lead/facilitate the sessions? (It may be helpful, especially in the beginning, if a professional can lead the group or at least make a presentation.)
  • Discuss with other participants what they want to get out of the group and how participants might help one another.
  • Plan long-term goals: Will the group be used as a vehicle to promote public awareness, to seek out isolated individuals who might like to participate, or will the group concentrate on building rapport among a tight-knit group of members?
  • Plan future agendas: Local agencies, national organizations, universities, and public libraries are all potential sources of information. There may be books, films, video tapes, and research articles available for loan that you can share with the group and/or use as a topic of discussion.

Recommended Readings

Starting a Self-Help Group for Caregivers of the Elderly, Louise Fradkin, et al., 1993, Children of Aging Parents, Woodburn Office Campus, 1609 Woodburn Rd., Suite 302A, Levittown, PA 19057. (800) 227-7294.

Head Injury Peer Support Group Training Manual, 1993, Family Caregiver Alliance, San Francisco, CA.

How to Organize a Self-Help Group, Andy Humm, 1997, The National Self-Help Clearinghouse, CUNY Graduate Center, 25 W. 43rd St., Rm. 620, New York, NY 10036.

Developing a Support Organization, Elizabeth McKinney, 1989, Legacy Community Health Education Support Services, Good Samaritan Hospital & Medical Center, 1014 N.W. 22nd Ave., Portland, OR 97210. (503) 413-7348.

Credits

Building Your Support Group, PWA Voice, Fall, 1989.

Support for Caregivers of Dependent Elderly, Vicky L. Hardy and Kathryn Riffle, Geriatric Nursing, Vol. 14, No. 3, May-June, 1993.

When the Best Help is Self-Help, or, Everything You Always Wanted to Know About Brain Injury Support Groups, Lawrence Miller, Journal of Cognitive Rehabilitation, Nov.-Dec. 1992.

Resources

Family Caregiver Alliance
785 Market Street, Suite 750
San Francisco, CA 94103
(415) 434-3388
(800) 445-8106
Web Site: caregiver.org
E-mail: info@caregiver.org

Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.

Through its National Center on Caregiving, FCA offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.

For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer's disease, stroke, head injury, Parkinson's and other debilitating disorders that strike adults.

American Self-Help Group Clearinghouse
375 E. McFarlan St.
Dover, NJ 07801
(973) 989-1122
www.selfhelpgroups.org

The National Self-Help Clearinghouse
Graduate School and University Center of the City of New York
25 West 43rd Street, Rm. 620
New York, NY 10036
(212) 642-2944

These national centers have regional affiliates across the U.S. and in Canada. Information on self-help for groups of all kinds is available.

Well Spouse Foundation
P.O. Box 30093
Elkins Park, PA 19027
(800) 838-0879
www.wellspouse.org
Email: info@wellspouse.org

Prepared by Family Caregiver Alliance in cooperation with California's Caregiver Resource Centers, a statewide system of resource centers serving families and caregivers of brain-impaired adults. Revised December 1997. Funded by the California Department of Mental Health. © All rights reserved.

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