From a Nurse's Perspective |
Sarcoma Support
An ESUN Article
Editor's Note: You'll find a comprehensive list of sarcoma support groups and support organizations in our resources section.
Finding strategies to cope with feelings and emotions associated with the diagnosis of sarcoma is important to living and managing this serious illness. On October 23, 2007, the Institute of Medicine of the National Academies (IOM) issued a press release entitled, "Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs," in which they announced completion of a review of cancer psychosocial services. In this release, the IOM committee noted, "Eradicating tumors is not enough, cancer care providers need to proactively address patients’ psychological and social needs as well."
The National Institute of Health (NIH) asked the IOM to study the delivery of psychosocial service to cancer patients and identify ways to improve it. In their review of the current state of psychosocial services, they emphasized that if emotional wellbeing is not addressed, there is potential for increased suffering and compromise on an individual’s ability to follow through on treatment. Their study has resulted in a report of the current status of psychosocial support which includes a listing of available resources and highlights of some programs which they noted as outstanding examples of excellent psychosocial support.
The IOM committee identified six domains of psychosocial problems which included coping as well as associated psychosocial services, such as peer support groups. Martha Crist is a registered nurse in Columbus, OH who has recently started a sarcoma peer support group to assist sarcoma patients in their practice to cope with the diagnosis and treatment of sarcoma. Her article outlines the components she has found important to initiating and establishing an effective group. She provides practical tips and ideas to assist others in starting a sarcoma support group.
Sarcoma Support Group
from a Nurse Facilitator Perspective
Martha Crist, RN
Arthur G. James Cancer Hospital and Richard J. Solove Research Institute
Columbus, OH
A support group is a group of people with common experiences and concerns who provide emotional and moral support to one another. A support group can provide a valuable service for the sarcoma patient and their loved ones throughout various times including pre-treatment, treatment and beyond.
I have facilitated a sarcoma support group for the past eighteen months. It takes time and effort to begin and successfully facilitate a group. If you are considering starting a sarcoma support group, seek help from others who share your same interests and identify individuals who can be co-facilitators. Dividing the duties will make it more pleasant, easier, and ultimately position you for success in developing and maintaining an effective group. A co-facilitator may also be a patient or loved one that has the time and desire to dedicate to the group. Some institutions may have an existing support group programs that can provide assistance in getting a group started.
Meeting Setting
Meetings should be held in a quiet, safe environment. Consider placing comfortable seating in a circle fashion so everyone and see others and hear each person speak. Our group utilizes an office waiting room after clinic hours. With members in wheelchairs, using crutches and canes, we do not have access to a large conference room with a center table, but use a large open room that I place chairs in a horseshoe fashion so the wheelchairs can close up the circle. When I notice a member arriving in a wheelchair, sometimes I will move a chair from inside the circle and let them back their wheelchair into that spot to give them more of a sense of belonging.
We offer refreshments at the beginning of the meeting. Bottled water, hot tea or coffee is not too expensive to have for a monthly meeting. Try to have a snack too. You may ask for volunteers within the group to provide the snack. This can all be available at the beginning of the meeting. Many will want at least a bottle of water during the meeting, and members can help themselves during the meeting time. I enjoy baking, so I usually bring baked goods to entice more people!
Meeting Format
We usually begin the meeting with a welcome message and brief announcements of upcoming events. Sometimes we have a short activity done by a social worker. The majority of the meeting time is then devoted to the group and discussion. The meetings generally last at least forty-five minutes of the total meeting time. During this time, each participant (patients and loved ones) introduce themselves and state their name, diagnosis and treatments. This gives everyone a chance to speak. Once introductions are completed, discussion begins and the meeting often runs itself. Sharing stories is an important part of any support group. Members will tell and re-tell stories. This may be the most important part of the meeting. As a facilitator, I sit back, stay quiet, observe and listen. At times I may interject if someone is dominating the conversation or if the topic needs to be redirected. You may have a very small group of people attend due to the rarity of the disease, but surprisingly a small group can carry a discussion for the meeting time. Often times I introduce topics or ideas for discussion if the group is struggling. It is always important to establish that all information discussed at the meeting remains confidential.
Sometimes, an incentive to have more people attend meetings is to bring in a speaker. I often ask the group if they have any topics they are interested in learning more about. Consider the group and their needs. Some ideas would be prosthetic devices, clinical trials, massage therapy, lymphedema management or perhaps have a surgeon or medical oncologist provide sarcoma updates. We have had a speaker discuss volunteer work at the cancer hospital. Several members signed up and now volunteer weekly. Many have expressed how this opportunity provides a feeling of being productive and usefulness in their lives.
My experience has been that a well facilitated group will result in dedicated members that will come to nearly every meeting. You will have a few others that will occasionally attend, depending upon their work schedules, where they are in treatment or lifestyles that do not allow them to attend regular meetings. As I mail out meeting reminders, I send them to everyone who has expressed an interest in our support group, even though I know they cannot attend every month. This keeps them informed of what we are doing, and hopefully they feel like they are still a part of the group. Members have commented they like receiving the monthly news in the mail.
After each monthly meeting, it is useful for the facilitators to get together to discuss the meeting and offer ways to improve it. Consistent evaluation, seeing what will work and what does not work for you own group can only make it better. Spending time brain storming can keep it interesting and fun.
Final Thoughts
My goal for the meeting is that each person will walk away feeling good inside, happy they came and hopefully their interactions with others has given them a sense of joy. At our last meeting, we had a white elephant exchange of dollar store type items. It was not an expensive event. The most important thing was it was fun. Comments I received the following day included, "I really enjoyed last evening – it was wonderful!" and "I had not laughed like that for a very long time and it really felt good" and "What a lift I received from attending last night. Thank you!" Sometimes I have no idea how the small things in life touch people. That is the reward. I see it in their eyes and feel it in their hugs I receive from each one of them.
When I leave the meeting, I am overwhelmed that each person took their time to come, be together to share their thoughts and feelings. Most of the members have quickly become good friends. Some will meet prior to the meeting to go out for dinner or they may pick up someone who needs a ride, while others will go to a nearby coffee shop afterwards to continue their discussions. Each and every participant brings their own personality and experiences to the group. I have watched them support each other through hospital visits during surgery and chemotherapy. They want to help each other.
I hope that if you choose to start a support group for your own sarcoma patients, families and/or friends, you will take a positive approach and have a realistic outlook on what a support group is all about. By creating and maintaining trust with others, we can share and support more deeply.
"All patients with cancer and their families should expect to receive cancer care that ensures provision of appropriate psychosocial health services. Today, it is not possible to deliver good-quality care without addressing patients psychosocial health needs." These are some of the concluding remarks from the IOM report on psychosocial care and cancer. Many cancer care offices and centers have support programs. However, not all have programs specifically focused on sarcoma. This is an opportunity for interested patients, families, and health care providers to collaborate to establish a group in their area. In addition to in person groups, there are online opportunities to find support as well. CancerCare is an example of one such organization of trained oncology social workers that provides professional support to anyone affected by a cancer diagnosis.
V4N6 ESUN Copyright © 2007 Liddy Shriver Sarcoma Initiative.