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
Structure, Goals and Group Process
The group must determine certain procedural and philosophical matters, including:
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.
Directory of California Support Groups for Care-givers of Brain-Impaired Adults, Family Caregiver Alliance, San Francisco, CA. Revised and reprinted annually.
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.
Family Caregiver Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
Web Site: http://www.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
100 Hanover Ave., Room 202
Cedar Knolls NJ 07927-2020
Web site: http://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
These national centers have regional affiliates across the U.S. and in Canada. Information on self-help for groups of all kinds is available.
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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