Support Groups – Guidance and Questions

Are you interested in finding a support group? Or are you unsure whether one is right for you? The following information can help you decide.

Benefits of Support Groups

• A safe haven for sharing true feelings; a non-judgmental atmosphere.
• A social outlet where you can make new friends.
• Information about reliable products and services.
• A place to learn coping mechanisms, saving you much trial-and-error.
• Advice on what lies ahead, so you can anticipate changes.
• Support for your sanity and confidence – you are not alone.
• Help in dealing with family members.
• TLC from people who truly understand your situation.

What Makes a Support Group Effective?

While any given group may or may not work for you personally, there are characteristics that make some groups more effective than others. Keep these in mind as you explore your own choices.

A caring atmosphere and trust between group members
A comfortable mix of participants, so bonds can build
Clear structure and purpose; members know why we are there and what will happen
Agreement on group rules, including confidentiality.
A good facilitator

Many groups rely on trained professionals, but the background of the facilitator is less important than their ability to devise and use an appropriate structure, identify resources, respect group rules and offer the empathy and concern that members need.

Types of Support Groups

Support groups can be organized in any number of ways. Although effective support groups have similar characteristics, their organizing structures can be very different. It’s important to understand the different forms that support groups can take, so you can decide which best meets your needs.

Condition-Specific Groups. These groups focus on a particular disease/disability/condition. They may be organized within a hospital structure, or by an organization such as The Spinal Cord Injury Network or the Alzheimer’s Association. They may be open to anyone interested in the condition, or designed for sub-groups, such as patients or family members or a combination of both. The advantage of disease-specific groups is that they offer access to excellent, up-to-date information on the condition as well as information about local resources.

Caregiver Groups. These groups are founded on the shared experience that comes from being a family caregiver, and all the emotions that accompany that role. Because the focus is on the caregiver—not the disease or condition—caregivers can openly discuss their own difficulties. Caregivers so seldom take the time or find the place to talk about their own needs, so this type of group may be especially valuable.

Relationship-Oriented Groups. This approach focuses on the relationship of a caregiver to the ill or disabled person as the cornerstone. A group might serve parents of special needs children, children of aging parents, or spouses of the chronically ill. The special nature of the relationships that each member shares makes for conversations that bring relief and support.

Family-Centered Groups. Closer to a therapy group than a support group, family-centered groups work with the family as a whole, improving communication and striving to strengthen the entire family as it copes with the illness of one of its members. In most cases, these groups require the structure and leadership that comes from having a professional facilitator with special training.

Advocacy Groups. An additional current trend is for support groups to include some advocacy activities, or to connect with advocacy groups. Following the influence of AIDS activist groups and the response of Congress and other funders to organized campaigns for dollars such as breast cancer research, some support groups have taken on advocacy roles. This can be both a healthy outlet for frustration and energy, as well as a way to hasten research, educate the media about a particular issue, or influence legislation.

On-Line Groups. Online groups provide many of the same benefits as traditional support groups, but have special characteristics. Worldwide self-help communities are possible, access to information is essentially unlimited, and connections can be made from your home. And for someone in a rural area, or someone dealing with a rare condition, electronic connections may be the only way to be in touch with others sharing your struggle. Relief from isolation has always been a principal benefit of groups. A caregiver who cannot leave home, can be a contributing member of an online group at any time and in any place.

Top of Page

Questions to Ask

Remember, joining a support group is an experiment. If one group does not work for you, try another, or try the same one again when the time seems better. Selecting a group that works in a way that is comfortable for you, and knowing what to expect, makes a big difference. Here are some questions to ask:

Who sponsors/runs the group? A hospital, church or established organization sponsor is a pretty good indicator that there will be an appropriate structure and reliable operation.

Who is the facilitator? Talk to the leader if possible, and outline your concerns and interests. See how it feels. Ask about the leader’s background and training, and how long the group has been running.

What is the group’s organizing principle? If you are newly dealing with a disease or condition, you may need information and resources that a condition-specific group can offer. If you have been caregiving for a long time, you may need support, shared experience and a place to let down your hair more than you need information.

What is the makeup of the group? Where and how often does it meet? What is expected of you—is participation required, or can you just listen? What are the rules of confidentiality?

Where to Find a Group?

Support groups tend to come and go. Some of them are even designed to last for a specific period of time. For that reason it may take some work to find one that meets your needs. Also it is important to note that even after you search high and low there just may not be one in your area. Support groups don’t exist everywhere. Here is a list of places to look:

Contact the local voluntary health agency that deals with your loved one’s condition, i.e. the Alzheimer’s Association, American Stroke Association or Multiple Sclerosis Society.

Call the local Area Agency on Aging or Department of Elder Affairs in your county. Check in the government pages of your phone book. Additional places to find support groups that focus on elder caring are adult day centers and senior centers.

Try the social work department of your local hospital.

Well Spouse Foundation is a national, not for profit membership organization that runs support groups for husbands, wives and partners of the chronically ill and/or disabled. These are peer facilitated support groups.
1-800-838-0879
Web site: www.wellspouse.org

Children of Aging Parents (CAPS) also has a network of support groups. These are run by trained facilitators.
1-800-227-7294
Web site: www.caps4caregivers.org

Don’t forget to check out the Internet. Type family “caregiver support groups” into Google or another search engine and you’ll find many organizations to contact.

Top of Page