SJCCF SUPPORT GROUP POLICY

THYROID CANCER COFFEE BREAK SUPPORT GROUPS: Thyroid Cancer Awareness, Community Health Education and Peer to Peer Support Network for thyroid cancer patients, survivors and loved ones nationwide.

RELATIONSHIP: The relationship between  Stevie JoEllie's Cancer Care Fund, Inc. and each local Thyroid Cancer Coffee Break Support Group is strictly limited to those matters contained in the SJCCF-Thyroid Cancer Coffee Break Support Group Facilitator's Manual.

Each local Thyroid Cancer Coffee Break Support Group is a separate, independent entity that is not controlled by  Stevie JoEllie's Cancer Care Fund, and to which Stevie JoEllie's Cancer Care Fund seeks to provide helpful information and support. Local groups are initially organized by a local volunteer, usually a thyroid cancer  survivor or caregiver/partner/parent.

Thyroid Cancer Coffee Break Support Group facilitators can be thyroid cancer survivors, pediatric thyroid cancer parents, caregivers or patient/survivor "partners", professionally trained facilitators from a local healthcare institution or organizations and pastoral care ministries.

FUNDING: Stevie JoEllie's Cancer Care Fund has no funds to financially support local Thyroid Cancer Coffee Break Support Groups, so organizers seek space that is available free for public use, such as libraries, hospitals, cancer centers, colleges or churches ect..

EXPENSES: If both the space and facilitators are free, there are few expenses required to set up and maintain each group. Start-up costs include the photocopying of flyers and a press release, postage (for mailers) and coffee and refreshments for the first few meetings. All of these costs were about than $200 in 2010.

In many cases the photocopying can be donated by a local printing company or support group hosting facility. A savy support group leader will also arrange for donated refreshements for the first few meetings. Subsequently you can arrange for support group members to collaborate and "donate" refreshments for everyones enjoyment. The critical cost is the time each volunteer gives to the group.

HOW  CAN SJCCF HELP LOCAL SUPPORT GROUPS?

1. Promote  local and independent Thyroid Cancer Coffee Break Support Groups in its promotional campaigns through Newsletters and Internet Marketing including social media networks.
2. Help locate and connect your group with experienced support group facilitators as a resource to new facilitators in your area.
3. Locate and advise of Free workshops for support group facilitators in your area as well as during our national conference.
4. Make available templates of press releases, flyers and posters support group facilitators can adapt for local use.
5. Make available sample letters sent by Stevie JoEllie's Cancer Care Fund and other facilitators to physicians and organizations.
6. Maintain a referral network database for newly diagnosed thyroid cancer patients, partners, parents, caregivers and survivors.
7. Maintain a database of all past and present members of local Thyroid Cancer Coffee Break Support Groups

Maintaining SJCCF-Thyroid Cancer Coffee Break Affiliation:  To maintain its affiliation with SJCCF-Thyroid Cancer Coffee Break each local group must send in an annual report by August 1 of each year. This report will include a current list of the facilitator(s) and other volunteers, a list of participants (including telephone numbers plus postal and e-mail addresses), the contact person and address for the group, the name and address of where the group meets and the name and telephone number for the contact person at that site.

Maintaining the history of each group: Each group should have a volunteer keep the history of the group. This doesn't have to be extensive, but it should include the date and place the group started, samples of flyers and press releases, articles from local media, annual membership lists and the names and addressess of the group's facilitators and other volunteers.

Name of the Group:  We ask that all groups working with Stevie JoEllie's Cancer Care Fund use the name Thyroid Cancer Coffee Break as part of the group identification. Examples: Thyroid Cancer Coffee Break Clifton NJ, Thyroid Cancer Coffee Break of  Orlando FL,  Thyroid Cancer Coffee Break of  San Diego CA and so on.

THE SUPPORT GROUP FACILITATOR'S ROLE:

• Facilitators: Make sure participants are comfortable and have a chance to aks the questions they need to ask and share as much as they are willing to share about their concerns and experience.

• Seating: sitting in a circle makes it easier to hear and see everyone. It also feels a lot friendlier and relaxing in a circle of "friends"

• Group Session Length: The length of the session is up to the organizers of each group. Most groups run about  90 minutes.

• Group Meeting Day: In our experience the best day to meet is probably late morning or early afternoon on Saturday or Sunday for most people who volunteer their time.

• Special Considerations: For those members, especially new members, who are hypothyroid and working, meeting in the evening after work is difficult at best. Meeting on Saturday means that some of Jewish thyroid cancer survivors will not be able to attend. Meeting on Sunday means that some of  Christian thyroid cancer survivors will not be able to attend.

What is the ideal support group meeting schedule in a large urban area?  One on Saturday; one on Sunday; one in the evening during the week; and one mid-day during the week. But there are few cities large enough to support four groups and we realize it is virtually impossible for volunteers to manage this schedule without the commitment and dedication of at least 4-6 support group moderators.

• Atmosphere: -The facilitator should strive to make the "feel" of the room as "kitchen-table" friendly as possible. This must be a place of nurturing and should feel as welcoming as possible. It is very useful to have a welcome volunteer for each session, someone who makes sure every member is greeted and "looked after" when they first arrive before the session begins. 

• Food and creature comforts: -Having coffee and healthy snacks help make the atmosphere welcoming, but the facilitator is NOT responsible for these goodies. The members of the group are responsible; if they want it, let them help you out by bringing in snacks and making coffee. They'll feel as though they're contributing and you won't feel burdened. 

• How many facilitators? - Two is ideal. Three is better. Four is optimal. It's important for the Group Leader or facilitator NOT to carry the full responsibility of the group. Having co-facilitators means that vacations, illness and the need for personal time or life events can all be handled easily without disrupting the support group schedule once the group begins meeting.

• "Other" Support Group "jobs" or key supportive roles: In general, the support group leader and one or two facilitators can take on all of the tasks necessary to maintain and nurture a local support group. However, it helps to avoid burn-out of volunteers and to insure continuity in case of illness to invite others from the group to take responsibility for some of the tasks such as:

1. Contact Person -- this person's name, phone and e-mail are listed in all promotional material and publicity for the group
2. Co-Facilitator -- facilitates support group sessions in a rotating basis;
3. Publicist or Public Relations Coordinator -- handles all the publicity and outreach;
4. Site Coordinator -- the person who is the liaison between the group and the site.

KEY POINTS:  The facilitator should ALWAYS begin first because most people feel very uncomfortable talking in a group at first. Facilitators can encourage introductions to go around the circle during each meeting, but make everyone aware that individuals start sharing when they're ready, hopscotching around the circle once the "support" group session begins because many people can't listen to what is being said if they feel the pressure of being next "in line" to talk.

• Format - As the facilitator of the first support group, Thyroid Cancer Coffee Break of  Clifton NJ, which began in October 2008, I followed the model I observed at The Survivorship Wellness Community support groups. Participants introduced themselves and talked about their thyroid cancer history.

• Structure- The overall structure for the model above then is: introductions, beginning with the facilitator(s), followed by others in a circle and then "support" discussions in no particular order.  If there are at least three or four people in a session, the conversation will go where those present want it to go. Other than making sure each person has a chance to talk and no one monopolizes the floor, the less structure the better for our purposes.

• Advice -The official policy of the Stevie JoEllie's Cancer Care Fund's  Advisory Board of Directors is that the organizers and facilitators of local Thyroid Cancer Coffee Break support groups affiliated with Stevie JoEllie's Cancer Care Fund  do NOT give medical advice. Nor do they endorse specific medical treatments.

Stevie JoEllie's Cancer Care Fund encourages treatment option discussions and supportive long term wellness ideas in an environment where each bit of advice is framed in a "share-my-personal-experience-with-you-discussion-forum" followed by the suggestion for the participant to see her/his doctor or get a second opinion before making any decision about treatment.

It is our experience that as members of a group become friends, they will offer advice to each other and to new members of the group with authority. The facilitator, however, should always make sure that during each support group session we remind our members that each person's clinical condition is unique and that as such what works for one person may not work for another, therefore, we "share" our personal experiences as such; personal experiences that may or may not be useful to others  as individuals.

What about outside facilitators? The ideal is to have a professionally trained facilitator who facilitates the group as part of her/his work or simply as a way to support your efforts from time to time. Hospitals, teaching centers, such as medical schools, and organizations have facilitators available. However, it is important not to get bogged down looking for a professional to facilitate on a regular basis. After all, it's more important to have a safe place for those newly diagnosed or facing treatment for the first time, a place where they can find others who've had similar experience.

Some organizations and many institutions will not permit support groups to meet unless one of its trained facilitators co-facilitates the group. In many cases, this is to limit the organization's or facility risk for liability. At some point, Stevie JoEllie's Cancer Care Fund may want to do the same thing, but for now, we're just a group of survivors, caregivers, partners and parents dedicated to helping ourselves and others.

Who May Attend a Thyroid Cancer Coffee Break? Local Support Groups  are generally open to all; patients, partners, caregivers, parents and survivors of thyroid cancer or whoever the local group is comfortable with and the decision is made locally by both the support group facilitators and the support group members.

• " Survivors" is defined in the broadest sense: those with the disease, their families, friends, colleagues and care givers. If groups are large enough, members may wish to separate into two groups for part of the session: one for those with thyroid cancer and one for their friends and families.

Separate groups are often very helpful for spouses, significant others and parents or caregivers to have a chance to talk with others having similar experiences. Each group can decide if those who are not thyroid cancer survivors may attend (students, physicians or other healthcare professionals). Occasionally, someone with a related thyroid condition (hypothyroidism, for example) may ask to attend; each group should establish its own policy.

Prepared by Wilma Colon Ariza, Founder

Stevie JoEllie's Cancer Care Fund

Email: sjccfthynet@gmail.com