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Untitled Document
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| Support Groups |
| What
They Are and What They Do |
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By
Mary Carol Randall,
MA
Reviewed
by Larry Prensky,
MS, CGC, CCGC
Last updated December 24, 2010
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Support
groups are a place for people to give and receive both
emotional and practical support as well as to exchange
information. People with genetic health conditions, as
well as their friends and families find support groups
to be a valuable resource — a place where people
can share medical information, get confirmation that their
feelings are "normal," educate others, or just
let off steam. When someone is searching for a support
group, the single most important thing to remember may
be: if the group doesn't feel right to you or doesn't
match your needs, try a different group. There are many
options available.
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Why Join A Support Group?
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Support
groups are made up of people with common interests and
experiences. People
who have been through, or are going through, a similar
circumstance can do more than sympathize with you —
they can relate to what you are going through and keep
you from feeling like you are alone.
However,
many people are unaware of the additional benefits of
joining a support group —
support groups can be a great place to find practical
tips and resources. At many support groups you can find:
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- Information
about medical treatments, research and strategies
(through brochures, booklets, websites, telephone
help lines, and person-to-person sharing in the group
meetings).
- Information
about public policy, legal resources, privacy laws,
and protection from discrimination.
- Links
to researchers.
- Financial
assistance and scholarships.
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What
Kinds of Support Groups Are Available?
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Support
groups can vary in how often they meet, their area of
focus, and who runs them. Some support groups are run
by professional facilitators or by specific groups (for
example, the American Cancer Society). There are also
peer-support groups, which were started by individuals
and do not have a professional facilitator.
Support
groups exist for almost any topic you can imagine. For
example, groups can be
- For
people with a specific genetic condition.
- For
people with a specific relationship to an affected
person, such as a sibling, spouse, or child.
- For
people looking for services such as short-term stand-in
help for caregivers, rehabilitation services, or financial
and estate planning.
- For
people dealing with grief and loss .
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Frequency
of Meetings. How frequently a group meets depends
on its purpose and the needs of its members. Large groups
with many chapters may have local meetings once a month
and annual meetings for the whole organization. Small
groups intended to address a specific issue —
for example, behavioral changes around managing asthma
or diabetes —
may meet once a week for a set number of weeks. The
life span of a support group depends on its focus and
the needs of its members. Some groups are designed to
run for only four to eight weeks; others last for many
years.
Meeting
Places. Support groups can meet anywhere. Many hospitals
offer support groups, but groups can also meet in individual's
homes, churches or temples, libraries, or other community
buildings. There are also online support groups, which
may be especially helpful for people who are homebound,
have limited free time to attend meetings, or don't
have a group nearby that meets their needs.
Optimum
Size. Optimum size varies
depending on the purpose of the group and the needs
of the members. Some groups have fewer than ten members;
others may have thousands. Large groups sometimes have
as their goal raising money, influencing public health
policy, or educating the public. Emotional support groups
—
for example, around grief or loss —
typically are small, so that participants can feel safe
expressing feelings.
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Comparing
Peer Support Groups With Those Facilitated by A Professional
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people prefer groups facilitated by professionals;
however, others may prefer a peer environment |
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Professionals
can contribute information and resources and help with
organizational tasks such as planning meetings, setting
up the meeting room, sending out messages, and getting
speakers.
Some
people prefer groups facilitated by professionals; however,
others may prefer a peer environment. People with genetic
health conditions often become "experts,"
in that they know a great deal about the medical, social,
and emotional aspects of having a particular disease.
They may want to connect with others who can help strategize
solutions from an "I've been there too" perspective.
One
approach is not better than the other. What is important
is for the individual to find a compatible group.
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How
to Find A Support Group
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Some ways to find a support group include:
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Talking to a doctor
- Asking
a genetic
counselor (genetic counselors can usually be found
at genetics clinics in hospitals)
- Asking
the administrator at the local hospital
- Consulting
with reference librarians at the local library
- Checking
online resources
- Contacting
disease-oriented associations, such as the American
Diabetes Association or the American Cancer Society.
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What
Makes A Good Support Group
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Although
what is "good" differs for each person, there
are some universal signs that indicate a well-functioning
group:
- Up-to-date,
reliable information
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Prompt response to contacts
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Regular meetings or newsletters
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Access to appropriate professional advisors (for example,
doctors, therapists for grief support, or employment
attorneys for workplace discrimination)
- Strong
leadership
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A clearly stated "confidentiality" policy
- Particular
qualities the individual is seeking (for example,
a group around a specific condition, or a group for
siblings)
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Factors
to Weigh When Choosing A Support Group
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A
person looking for a support group might consider the
following:
- Are
you seeking specific information about medical treatment
options? Companionship? Peer counseling?
- How
far can you travel? Do you need help with transportation?
- Is
the kind of group you want just for someone who
is ill, or also for family members? Because of the
nature of genetic conditions, genetic support groups
are often made up of affected individuals and their
family members. Some members may be at risk, and
others may be providing emotional or physical support
for someone who is ill.
- What
about the emotional dynamics of the group? Are you
looking for a group where you can openly discuss
feelings, or are you primarily interested in finding
services to further education and research?
- Are
you seeking a group run by a professional facilitator,
or a peer-support group?
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Starting
A New Peer Support Group
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Starting
a new group is time consuming and takes a lot of work.
Additionally, an established group probably has certain
advantages, such as already established informational
materials, meeting times and places, and professional
contacts.
However,
in some cases the type of group you need may not exist
in your local community. Ways to begin a new group
include getting the help of a local hospital, doctor,
church or temple. (Ministers and rabbis often know
about the health conditions of members of their congregation
and can facilitate sharing information and bringing
people together.)
After
a group is started, the members may want to consider
listing it through the local paper or an associated
organization (for example, the American Cancer Society),
so that other people can learn about the new resource.
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Related
Resources
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The
Genetic Alliance
Web site contains a database of support groups.
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