How to Start a Cancer Support Group in Your Community

December 13, 2012

We've updated this blog, find the most recent version at How to Start Your Own Cancer Support Goup

“How can I start a support group?” is a question I am often asked. For people diagnosed with cancer and their loved ones, there is increasing evidence that support groups can be beneficial in improving not only the day-to-day quality of life but also on your chances of survival. For some it is relatively easy to find a local group, and there are also telephone and online support groups available. However, for those of you unable to locate a group that fits your needs, here are some suggestions on how to start a support group—but look before you leap! Starting a group can be challenging and time consuming, and it takes a lot of careful planning and thought—yet the rewards can be amazing!

First, check that there is no existing support group in your community that would meet your needs. This sounds obvious, but sometimes just knowing the right people to ask will uncover groups you might not be aware of. Start by asking your oncology nurse, patient navigator or social worker if s/he knows of any groups in your community. These folks are excellent sources of information about what’s going on locally. The Cancer Support Community Helpline (888 793-9355) can also help you locate groups.

So let’s say you’ve done your homework and haven’t found anything that fits your needs. The next thing to consider is why there isn’t already a group in your area. It could be that your situation or diagnosis is unusual and getting a large enough group of people together who are in the same situation and live within traveling distance is not possible. Again, your health care team may be able to help you figure this out.

Once you have determined that there is a need for a group in your area, you will need to think carefully about what kind of group you would like to have. Groups can be general in nature or specifically focused as:

  • For people with specific types of cancer (breast cancer, colon cancer, lung cancer, etc.)
  • Gender-specific (just for men or for women)
  • Age-specific (teens, young adults, seniors, etc.)
  • Just for patients, for caregivers or family and friends or a combination
  • For various stages of the cancer experience (newly diagnosed, treatment, post-treatment, metastatic or advanced disease, long-term survivorship, bereavement)

Next you need to consider what the focus of the group should be. Some ideas are:

  • Educational with guest speakers who share medical and other resource information
  • Focused more on emotional issues such as coping with the illness and treatment, side effects, family issues, death and grief, etc.
  • A combination of both educational and emotional support
  • A time-limited series such as a six-week series for women newly diagnosed with breast cancer.

How often the group meets is another important consideration. Will monthly or weekly work best? Both have challenges. For monthly groups, if you miss a group then it may feel like a very long time before you will get the support you are looking for. On the other hand, if it is a weekly group, it may be difficult to get there on a regular basis which can defeat the purpose of the group. In order to feel connected and comfortable sharing feelings with others, it takes time and regular connection.

Who should lead the group is an important decision that will be determined by multiple factors. Options include:

  • Peer-led by a fellow patient or survivor or caregiver or what is also called a “self-help” group
  • Professionally-led by an oncology social worker, nurse, psychologist, chaplain or other health or mental health professional trained in facilitating a support group
  • Co-facilitated by two professionals, two peer leaders or a combination of the two

Here are several questions to consider that will help you decide who might best lead the group:

  • Are they a good listener?
  • Can they be realistic about why they want to do this?
  • Can they be objective and not promote a certain belief system or way to cope with cancer?
  • Do they have the time necessary to plan and publicize the meetings, coordinate special events and talk with individual group members who call with problems?
  • Are they committed to attending the meetings regularly?
  • Are they able to be assertive enough (in a kind way) to keep the meeting on track?
  • Do they maintain a positive, encouraging and hopeful attitude?
  • Are they able to not give advice or tell others what to do?
  • Are they prepared to share in other people’s struggles with cancer or in their grief and fears?
  • Do they know what do to if there is a difficult, rude or unpleasant group member or a conflict in the group?

Although this short guide is not comprehensive, I hope it has provided some ideas for you to consider. Feeling like it is just too much? Don’t worry, support is out there. Talk to the guy next to you at the infusion center. Ask around in your church if there is anyone like you. Ask friends and family if they know someone. The important thing is not to go through it alone!