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Support Groups
  What They Are and What They Do

By Mary Carol Randall, MA

Reviewed by Larry Prensky, MS, CGC, CCGC
Last updated December 24, 2010

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.

Why Join A Support Group?

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:

  • 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.



What Kinds of Support Groups Are Available?

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 .

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.



Comparing Peer Support Groups With Those Facilitated by A Professional

Some people prefer groups facilitated by professionals; however, others may prefer a peer environment

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.



How to Find A Support Group

Some ways to find a support group include:

  • 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.



What Makes A Good Support Group

Although what is "good" differs for each person, there are some universal signs that indicate a well-functioning group:

  • Up-to-date, reliable information
  • Prompt response to contacts
  • Regular meetings or newsletters
  • Access to appropriate professional advisors (for example, doctors, therapists for grief support, or employment attorneys for workplace discrimination)
  • Strong leadership
  • A clearly stated "confidentiality" policy
  • Particular qualities the individual is seeking (for example, a group around a specific condition, or a group for siblings)



Factors to Weigh When Choosing A Support Group

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?



Starting A New Peer Support Group

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.



Related Resources

The Genetic Alliance Web site contains a database of support groups.


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