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Key Words
support group, self-help group, mutual aid group, mutual support,self-help organization,
self-help clearinghouse, self-help network, caregivers' network
Glossary
Support
group: Two or more people who come together to deal with a shared
concern or problem.
Support
groups provide caregivers a meeting place where they can share information,
thoughts, feelings and experiences with people who are either in
the same boat or have "been there." The groups are usually
a small number of individuals with a common interest who meet at
a specific location on a regular basis. However, support groups
are now springing up on Web site forums, bulletin boards and chat
rooms; as well as on listservs, newsgroups, use-net groups and e-mail
mailing lists. Whether it requires bricks and mortar or takes place
in cyberspace, the support group can be one of the most valuable
tools in the caregiver's survival kit.
Support
groups, also called self-help groups, can be organized
- to provide information and education about a specific disease,
disability or social concern
- to explore the psychological and social impacts of diseases,
disabilities and social issues
- to exchange information about resources and support services
- to help individuals learn new care skills
- to create a social network for mutual aid and support
- for advocacy and lobbying
Caregiver
support groups
- provide social and emotional support
- reduce caregivers' feelings of isolation
- Give people an opportunity to vent feelings and frustrations
- give caregivers strength to cope with stressful events and experiences
- reduce caregivers' levels of depression and anxiety
- give caregivers information and hope
Things You Should Know
Support group participation
The more actively support group members
participate in the group:
- The higher their levels of satisfaction
- The greater their coping skills
- The more positive their attitude toward the problem or issue
Barriers
to participation in support groups
- reluctance to disclose personal problems to strangers
- perception of joining a group as a sign of weakness
- fear of becoming overwhelmed by other people's problems
- lack of information on availability of groups
- lack of support from family and friends
- lack of information on how to start a group
- geographic distance
- age — older adults are less likely to seek outside help
- ethno-cultural background
- mobility restrictions
Types of Support Groups
- Traditional support groups and self-help groups
These are usually informal groups of individuals with similar
concerns who meet, on a regular basis, to exchange information
and provide peer support. The group leader may be a peer or a
professional facilitator. The group may be self-organized or part
of a larger organization.
- Telephone networks
Telephone networks can be particularly effective for people who
need one-on-one support but are unable to attend regular support
group meetings.
- Self-help networks
Self-help networks consist of support groups that have banded
together to form a larger organization. This usually provides
a strong base for fundraising initiatives and advocacy and lobbying
activities. Self-help networks usually have a single focus or
cover a specific geographic location.
- Self-advocacy groups
Self-advocacy groups focus on educating the public about the group's
priority issues and lobbying decision-makers to bring about legislative,
policy and program changes and initiatives.
- Online support and self-help groups
- Discussion groups on the Internet
Individuals can post messages and respond to messages on bulletin
boards or enter "live" chat rooms.
- Newsgroups on e-mail
Individuals can post and respond to messages on bulletin boards.
- E-mail
mailing lists
Subscribers to a specific e-mail account share ideas, feelings
and information.
Things to Look For
Successful support groups
- provide a safe, secure, welcoming environment
- respect the confidentiality of members' discussions
- encourage members to be respectful towards each other
- emphasize emotional support and practical coping skills and strategies
- encourage active participation and active listening on the part of all members
- encourage members to give and receive help
- are open to all members of the public who share a common experience
- hold meetings on a regular basis, preferably free of charge
- have an organizational framework
- are run by and for group members
- use peer members as facilitators and educators
- invite professionals to participate as guest speakers and to play a consultative role
- have strong community links
- share their collective knowledge about a wide range of resources
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