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Summary

Support Groups are groups of people with the same health condition (and caregivers) who come together for support, comfort and to learn practical information from people with similar experiences. Members help each other. Support groups are led by trained mental health professionals (a social worker, psychotherapist or psychiatrist).

Support groups have a lot of benefits even if you have support from family and friends. There is a unique strength in group membership. Some research shows that joining a support group not only improves quality of life it also enhances survival. Support groups are also a good source of practical information about living with your health condition.

Experience indicates that support groups are as useful to men as women.

Support groups meet in person, on the telephone or on the internet. Even if you live in a rural area, you can attend a support group. Experience and at least one study indicate that online support groups work as well as in person support groups.

There are all kinds of support groups so the odds are there is at least one in which you will feel comfortable.

The identity of the people who attend a support group and what happens there is kept confidential.

Whether or not to attend a support group is a personal decision, not a question of right or wrong. It is perfectly reasonable to choose not to attend a suport group if for any reason you do not feel comfortable.

If you are considering joining a support group, we suggest that you initially attend any support group for a few sessions as a "visitor."  

  • It will give you a chance to see if you are comfortable in a group setting.
  • Since all support groups are not created equal, you may find that you have to try more than one to find a group that is right for you. It's worth the effort. The benefits can be that great.
  • Consider whether the group seems to be actively working toward wellness or whether it is just conducting a "pity party". 

If you start going to a group and it ends up making you feel worse, it's okay to look for another group.

If no support group works for you, consider starting one of your own. Such groups are known as "Self help" groups. Alternatively, consider at least finding a buddy - someone else in your situation with whom you can communicate openly. To learn about buddies, and how to find one, click here.

Another option to consider is one-on-one contact with another person in your same situation. Such a person is referred to in the medical community as a "buddy.". To learn more, including how to find such a person, click here.

For additional information, see:

NOTE:  There are informal chat groups on the internet in which you can seek support at any time of the day or night. While these online groups can provide valuable emotional support, they may not always offer correct medical or other information. Be careful about any information you get from the Internet. Of course, check with your doctor before making any changes that are based on what you read or hear.

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What Is A Support Group?

A support group for people living after a diagnosis is a collection of people who either have or are affected by a particular health condition and who come together to:

  • Help themselves and each other better understand the experience they are all going through.
  • Learn to cope with what is happening.
  • Share practical information about the situation and their health condition.

There are various types of support groups.

How Does A Support Group Work?

While all support groups are different, most are led by a moderator.

Each group determines its own programs and meeting schedules.

Members come together at a prearranged time, usually at least once a week during the term of the group. The exception is the type of online groups that meet via a bulletin board.

Topics and issues to be discussed are usually indicated by the moderator with input from the group members.

All group members are usually encouraged, or at least invited, to join in on discussions. If you prefer, most groups allow you to just sit and listen.

Groups generally require members to agree that anything said in a group meeting must remain confidential. The identity of group members is also kept confidential.

Participation is usually free. Some groups charge a fee.

Questions To Ask Before Joining A Support Group

If you are thinking about joining a support group, here are some questions you may want to ask the group's contact person:

  • Who attends? For instance:
    • Survivors, caregivers, family members.
    • Where are they on the illness continuum (For example, newly diagnosed? In treatment?)
    • Age range
  • Who leads the meetings: a professional or a survivor? If a professional leads the group:
    • Is he or she a medical professional, social worker, or psychologist?
    • What are his or her credentials?
    • Experience?
  • How large is the group?
  • Are there any fees involved?  (If there is a fee, check your health insurance to see if it will pay the fees).
  • How long are the meetings?
  • How often does the group meet?
  • How long does the group meet: does it meet for a set number of weeks (say 8 - 12 weeks) or is it open ended?
  • Where does the group meet?
  • How long has the group been together?
  • What is the format of the meetings?
  • Is the main purpose to share feelings, or do people also offer tips to solve common problems?
  • If I attend a meeting, can I just sit and listen?
  • What are the group's rules? For instance, in some groups, people are encouraged to speak with each other between sessions. In others, such dialogue outside of the group is discouraged.

The Various Types Of Support Groups

There are two major types of support groups: informational and psychosocial. Information gruops only provide basic knowledge on a wide variety of issues. The concept of this kind of gorup is simply to inform.

The type of support group generally referred to when the subject is a life changing condition is a psychosocial group. These are supportive/expressive programs that focus on the emotoinal, psychological, and spiritual aspects of what members are going through. You'll learn from people who have been there before you, and you will help people with your contribution. The information shared is psychological, emotional, information about the disease, and practical information.

There are many varieties of psychosocial support groups. Support groups:

  • Meet in person, over the telephone, or online.
  • Are led by a professional such as a psychiatrist, psychologist, or social worker. (Groups led by other lay people are known as "Self help" groups). 
  • May be education based or emotion based, or a combination of the two.
    • Education based groups focus primarily on teaching participants about their illness.
    • Emotion based groups focus primarily on helping people learn how to cope with feelings about their diagnosis.
  • May be for patients only, or may be for both patients and their loved ones.
  • Can vary in size, approach, and atmosphere.
  • May be free or there may be a charge. There is generally a charge for groups run by a psychiatrist or psychologist.
  • May continue to meet indefinitely or be closed ended, say for a period of 12 weeks.
  • May have outside speakers who talk about topics of interest to group members. Speakers usually permit a question and answer period.
  • May be closed to members only. Some groups allow visitors.

To Learn More

A Support Group Compared To A Self Help Group

Self help groups are basically support groups that are led by members instead of mental health professionals.

When a group is led by a mental health professional, there is someone who:

  • Tries to keep the overall tone of each meeting positive.
  • Looks out for the emotional safety of each member during each meeting.
  • Watches the emotional needs of each member so that each member can leave the meeting feeling more positive than when the meeting started.
  • Watches for misinformation. 
  • With a self help group, no one is charged with these objectives. Even if a member takes on this role, he or she has no formal training in this area.

To Learn More

More Information

Self Help Groups

Reasons To Consider Trying A Support Group

Support groups are also known as mutual self-help groups because individuals with the same health condition help each other. Members learn from each other's experiences.

Studies show that participants in a support group tend to feel less worried, anxious and depressed, with a better quality of life and more vigor.

Speficially, participants in a support group can:

  • Obtain understanding and companionship.
  • Talk about difficult issues with people who are not emotionally involved.
  • Find a way to ease feelings of isolation and aloneness by talking with other people in a similar situation.
  • Learn from each other. For example:
    • Medical tips.
    • How to cope with the side effects of treatment and/or of a particular disease.
    • Valuable tips and short cuts to the practical matters of living with a particular health condition.
    • How to decrease costs and access moneys and other resources that may be available locally.
    • How to improve knowledge of a health condition.
    • How to improve each member's emotional life.
    • How to improve family life and friendships.
    • How to deal with practical problems at work, in school and in other settings.
  • Provide a forum for the participant to share what he or she learned about living with the condition.
  • Relieve feelings of hopelessness.
  • Incease feelings of control.
  • Provide opportunities to discuss body image, intimacy concerns and relationship challenges. These subjects are part of the experience that people may not find safe places to talk about. They are quality of life issues and deserve the opportunity to get untangled with other people who understand.
  • Learn about and from the experience of others – collective wisdom from the TRUE experts!  No one knows what it is like to live with your health condition like other people who are living with it as well. Support groups allow you to learn from those experts and to be an expert to the other members as well.
  • You can talk openly about end of life issues. “What if…?” 

Studies show that people in support groups show significantly lower depression, fatigue, and confusion, plus more vigor. People in support groups also feel a sense of connection. As one participant said: "You will always have a place to talk things out, in the company of people who understand."

In addition to all these advantages, a 1989 study of a small group of women with breast cancer found that those who were part of a support group lived 18 months longer on average than those who were not involved in support groups. According to the Harvard Health Letter, the results of other studies that have attempted to duplicate this result have been split down the middle. The leader of the 1989 study has speculated that the reason for the difference in results is as much about what has happened with breast-cancer since the study as about the value of support groups. Treatments have come a long way, and breast cancer is out of the closet. As the Harvard Health Letter states: "While participating in (a support group) might have been enough to tip the balance in the 1980s, it is now just one of several factors that can improve a patient's well-being."

If you join a support group, keep in mind that any information you receive about your condition should be confirmed through reliable sources. Likewise, keep in mind that what works for other people emotionally, may not work for you.

Is A Support Group Right For Me?

Even if you do not think a support group is right for you, we strongly suggest that you try at least one.

To decide what, if any, type of support group may be right for you, consider your needs:

  • Are you feeling as if you are not in control of your life?
  • Are you looking for medical and/or practical information that you haven't received from your doctor?
  • Are you not getting the support you would like from family and/or friends?
  • Are you experiencing stress, depression or anxiety as a result of your diagnosis?
  • Are people having trouble relating to you as a result of your diagnosis?
  • Are you having difficulty with physical symptoms or activities of daily living?
  • Do you have questions or concerns about sexual relationships as a result of your diagnosis?

Answering yes to one or more of these questions could be an indicator that you might receive benefit from some type of support group.  

On the other hand, support groups may be painful. 

  • It is upsetting to watch someone you care about get sicker and possibly die, especially if that person has the same condition you do.
  • Your fears may be heightened as you learn more about the practical aspects of living with your condition. 
  • It may be painful to talk about yourself, including your anxieties and fears.

Most people find that the benefits of a well-led support group far outweigh these drawbacks. Experience indicates support groups are worth giving a try. You can drop out at any time. You don't have to tell anyone you're trying a support group. What happens in a support group is kept confidential. 

If you find that the drawbacks are greater for you than the advantages, at least consider making ongoing contact with a person in a similar situation. (For information about finding a buddy, click here.) Also consider working with a professional therapist. See "To Learn More."

 



 

 


 

 

To learn about internet (online) support groups, see: Internet (Online) Support Groups.

 

Should I Consider A Support Group That Meets In Person, On The Telephone Or Online?

Which type of meeting is better for you depends on your personality, needs, and what's available in your area. It is worth trying different types until you find the type of group that is best for you. (Note: If you prefer, you can join more than one type of group at the same time).

An in person meeting may work for:

  • People who enjoy group settings.
  • People who have little or no difficulty speaking in front of other people.
  • People who want the comaradie of being in the presence of other people.

A meeting on the telephone may be best for:

  • People who have difficulty moving around, are homebound or in an institution such as a hospital, nursing home or assisted living facility.
  • People who travel.
  • People in suburban or rural areas.
  • People who are self conscious around other people.
  • People who are not comfortable being seen in public.
  • A person who wants anonymity.

An online meeting may be best if:

  • You have difficulty speaking up in a group.
  • Groups make you nervous.
  • You want to access support more often than a group meets or at your own schedule.
  • Seeing other people who may look sick is difficult for you.

To Learn More

Caregivers (Friends and Family) And Support Groups

Attending a support group can be even more important for a caregiver than a patient because caregivers are often the forgotten people when it comes to other people providing support and understanding.

Many support groups for patients also welcome caregivers. Some groups restrict attendance solely to people with the health condition.

There are also seprrate caregiver support groups. Such groups provide mutual support from people in a similar situation. They also provide information about helpful resources and shared wisdom. They can help people who are new at caregiving deal with difficult, practical aspects of caregiving.

How Do I Locate A Support Group?

If you would like to try a support group, first determine whether you want a group that meets in person, on the telephone or on the internet.

To locate a group that meets in person or on the telephone, consider contacting one or more of the following:

  • Your health care provider or nurse.
  • A social worker or patient navigator. If you do not have a social worker or patient navigator, you can call a hospital near you and ask to speak with one.
  • A hospital or institution which treats people with your condition. 
  • A local nonprofit, disease specific organization.
  • American Self-Help Group Clearinghouse has an online database of support groups that you can search through at: www.mentalhelp.net/selfhelp offsite link.
  • Mental Health America offsite link has a list to help find support groups.

To try a support group on the internet, there are websites that will point you in the right direction.

  • Web sites of the national disease specific nonprofit organizations are likely to have information about support groups.
  • A list of many support groups is available from the government website, www.healthfinder.gov/moretools/support.htm offsite link.
  • www.support-group.com offsite link helps locate online groups for your condition and whatever other criteria are important to you.
  • If you have a type of cancer, see: 

NOTE: Before joining an online support group, see Internet (Online) Support Groups.

To Learn More

How To Cope If A Support Group Member Becomes Sicker Or Dies

A downside of support groups is the possibliity that other peoplein the group may experience an unexpected decline in their health or die.

If this happens, keep in mind that what happens to any particular individual does not indicate what will happen to you. Just as statistics do not apply to any particular individual, neither does what happens to another person, or even a group of people. We are each as individual as a snow flake.

It is normal to grieve over the loss of a person you know. Grief can show up as depression, anxiety or panic.  

  • If grief begins to unduly burden your life, seek help. Start by talking with your medical professional. 
  • To learn about dealing with loss and grief, click here.  
  • To learn about the signs of depression, click here. For steps you can take to help lessen the effects of depression, click here.  
  • To learn about anxiety and dealing with it, click here. For information about coping with panic, click here

How To Start Your Own Support Group

If none of the available support groups meet your needs, consider starting one of your own.

An excellent description of how to start your own group, including tips for first meetings and how to make a group work, is located at: www.selfhelp.on.ca/start.html offsite link