ThyCa
Support Group Manual
Thyroid Cancer Survivors' Support Groups
Coordinated by ThyCa: Thyroid Cancer Survivors' Association,
Inc.
Sara Gorrell Brenner, support_coord@thyca.org
Support Group Coordinator 2004-present
PART ONE: The Relationship
Between ThyCa, Inc. and Local ThyCa Support Groups
The relationship between ThyCa:
Thyroid Cancer Survivors' Association, Inc. and each local ThyCa support
group is strictly limited to those matters contained in the ThyCa
Support Group Facilitator's Manual. Each local support group is a
separate, independent entity that is not controlled by ThyCa and to
which ThyCa seeks to provide helpful information and support.
Local groups are initially
organized by a local volunteer, usually a thyroid cancer (thyroid
cancer) survivor.
Group facilitators are either
thyroid cancer survivors or professionally trained facilitators from
a local healthcare institution or organization.
Funding
ThyCa, Inc. has no funds to
financially support local groups, so organizers seek space that is
available free for public use, such as libraries, hospitals, cancer
centers and colleges.
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 and coffee and refreshments for the first few meetings.
All of these costs are less than $50 in 1999, and in many cases the
photocopying will be donated by a local printing company. The critical
cost is the time each volunteer gives to the group.
How ThyCa, Inc. can help
ThyCa Inc. will help local
support groups in the following ways:
| 1. |
list each local
group on the Association's web page
|
| 2. |
support local groups
in its promotional campaigns
|
| 3. |
provide experienced
facilitators as a resource to new facilitators
|
| 4. |
conduct a workshop
for facilitators at the annual conference
|
| 5. |
make available templates
of press releases, flyers and posters facilitators can adapt
for local use
|
| 6. |
make available sample
letters sent by ThyCa and other facilitators to physicians
and organizations |
| 7. |
maintain a referral
network |
| 8. |
maintain a database
of all past and present members of local support groups |
Affiliation Agreement
The relationship between ThyCa:
Thyroid Cancer Survivors' Association, Inc. and each local ThyCa support
group is strictly limited to those matters contained in the ThyCa
Support Group Facilitator's Manual. Each local support group is a
separate, independent entity that is not controlled by ThyCa and to
which ThyCa seeks to provide helpful information and support.
Maintaining Affiliation with
ThyCa, Inc.
To maintain its affiliation
with the Association, each local group must send in an annual report
by August 1. 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
withThyCa: Thyroid Cancer Survivors' Association, Inc. use the name
ThyCa as part of the group identification. Examples: ThyCa Merrimack,
ThyCa Toronto, ThyCa San Diego County, etc.
PART TWO: FACILITATOR'S ROLE
Our role is simple: We need
to 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.
Seating
Sitting in a circle makes
it easier to hear and see everyone, and it feels friendlier.
Time
The length of the session
is up to the organizers of each group. Most groups run 90 minutes.
Day of the week
The best day to meet is probably
later morning or early afternoon on Saturday or Sunday. 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 our Jewish
thyroid cancer survivors will not be able to attend. Meeting on Sunday
means that some of our Christian thyroid cancer survivors will not
be able to attend.
The ideal schedule in a large
urban area would be to have four groups: 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.
Atmosphere
The facilitator should strive
to make the "feel" of the room as kitchen-table friendly
as possible. Keeping the lights lower and using non-fluorescent light
helps. This must be a place as nurturing and welcoming as possible.
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. It's important
for the facilitator NOT to carry the full responsibility of the group.
Having co-facilitators means that vacations, illness and the need
to escape can all be handled easily without disrupting the schedule,
and once the group begins meeting.
Other jobs
In general, 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. These include:
-
Contact Person -- this
person's name, phone and e-mail are listed in all promotional
material and publicity for the group
-
Facilitator -- facilitates
each session;
-
Publicist -- handles all
the publicity and outreach;
-
Site Coordinator -- the
person who is the liaison between the group and the site.
Format
The facilitator of the first
support group, ThyCa Merrimack Valley, which began in November 1996,
followed the model he had observed at The Wellness Community's support
groups. Participants introduce themselves and talk about their thyroid
cancer history. The facilitator should ALWAYS begin first because
most people feel very uncomforatble talking in a group at first. Facilitators
should not encourage the introductions to go around the circle, but
let people start when they're ready, hopscotching around the
circle. Many people can't listen to what is being said if they feel
the pressure of being next "in line" to talk.
Structure
The overall structure for
the model above then is: introductions, beginning with the facilitator(s),
followed by others 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.
Advice
The official policy of the
ThyCa Board of Directors is that the organizers and facilitators of
local support groups affiliated with ThyCa do NOT give medical advice.
Nor do they endorse medical treatments not
endorsed by ThyCa, Inc.'s Medical Advisory Board. However, the fact
is that as members of a group become friends, they will offer advice
to each other and to new members of the group. The facilitator, however,
should always make sure that each bit of advice is followed by the
suggestion for the participant to see her/his doctor or get a second
opinion before making any decision about treatment.
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. 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. After all, it's 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 risk for liability. At some point,
ThyCa may want to do the same thing, but for now, we're just a group
of survivors dedicated to helping ourselves and others.
Who may attend?
Local ThyCa Support Groups
are open to all survivors of thyroid cancer. 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 and significant
others to have a chance to talk with others having similar experiences.
Each group will 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 13 March 1999
by Ric Blake, ThyCa Support Group Coordinator 1999-2001 and
ThyCa Merrimack Valley Facilitator, 1996-1999, ThyCa Boston Co-Facilitator
