lucinda k. porter, rn, ba author of free from hepatitis c * health educator hepatitis c support...
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Lucinda K. Porter, RN, BAAuthor of Free from Hepatitis C
www.LucindaPorterRN.com *
Health Educator Hepatitis C Support Project
Starting and Maintaining a Support Group
INTRODUCTION
“It takes community to maintain a human.”
- Earon Davis
OBJECTIVES
Describe at least one benefit of support groups
Recognize different types of support groups Name 3 strategies for starting a support
group
Identify resources to help start and maintain a support group and improve support group facilitation skills
“None of us, including me, ever do
great things. But we can all do small things, with great love, and together
we can do something wonderful .”
- Mother Teresa
BENEFITS OF SUPPORT GROUPS
BENEFITS OF SUPPORT GROUPS
Creates an arena to discuss feelings and increase personal empowerment
Provides education
Enhances networking and identification of resources
BENEFITS OF SUPPORT GROUPS
Reinforces health, safety, and prevention message
Creates an atmosphere of camaraderie and redirects focus from self to others
Gives group facilitator a venue to reach a group of people and to follow-up with group members
THE EVIDENCE
“Those in support groups lived on average twice as long as those who had not been in a group - an 18-month extension. (Published in The Lancet, 1989) However, the group model emphasized confronting cancer and death rather than “wishing it away.”
The focus was on living better, not on living longer.
- David Spiegel, Living Beyond
Limits
THE EVIDENCE
“Support groups can improve quality of life – reduce anxiety and depression, increase coping skills, and help symptom management.
A thorough understanding of illness affects physical and psychosocial factors that affect response to treatment and resistance to disease progression.
The most effective techniques involve facing the illness directly.
There is no evidence that these techniques will cure an illness, but there is evidence that these may prolong life with cancer, heart disease, and other chronic diseases.”
- David Spiegel, Living Beyond Limits
“Diversity is the one true thing we all have in common.
Celebrate it every day .”
- Unknown
TYPES OF SUPPORT GROUPS
Types of Support Groups What is the purpose of the
group?
● Education● Information● Emotional Support
Types of Support Groups
Who does the group serve?
Local communityClients for specific agency or
provider-baseCo-infected clientsThose in various phases of
medical treatmentThose newly-diagnosed Friends, family and others
Types of Support Groups
What type of group will this be?
Open vs. closedDrop-in vs. pre-screened or
commitment-basedOngoing vs. time-limitedGuest Speaker
Types of Support Groups
What leadership model will this group use?
Trained healthcare facilitator
Peer-ledDesignated facilitator vs.
rotatingCo-facilitated
PRACTICAL CONSIDERATIONS WHEN PLANNING A GROUP
“NO ONE CAN WHISTLE A SYMPHONY. IT TAKES A WHOLE ORCHESTRA TO PLAY IT. ”
- H.E. LUCCOCK
The Nuts and Bolts of Support Groups
GROUND RULES
ConfidentialityCell phones, pagers
silencedNo physical or verbal
violence Group members not
allowed to attend if under influence of non-prescribed drugs or alcohol
One person talking at a time/no interruptions/no side conversations
Group members strive to be non-judgmental and accepting of others
Discussion in the first person – use “I”
No advice or advice with care
No conversation monopolies
Arrive on time, stay entire time, end on time
Regular attendance
PLANNING A GROUP
What kind of group do you want?
Education-based Social and personal support and networking Emotional support Hybrid
PLANNING A GROUP
Who does the group serve? Local community Clients for specific agency or provider-base Those in various phases of medical treatment Those newly-diagnosed Co-infected clients (HCV/HIV, HCV/HBV, HIV/TB
etc.) Dual-diagnosis patients with substance abuse
and/or mental illness diagnosis(es) Friends, family and others
PLANNING A GROUP
What type of group will this be?
Open vs. closed
Drop-in vs. pre-screened or commitment-based
Ongoing vs. time-limited; if time-limited, how many sessions will the group meet?
PLANNING A GROUP
When will we meet?
What will be the duration and frequency of meetings?
How many people will participate in the group?
PLANNING A GROUP
Where will the group meet?
Is it easily accessible? Is it private and comfortable? Are there enough chairs? How is the room temperature and do you have
control over the thermostat? How is the parking? Is there public transportation to the site?
PLANNING A GROUP
Where will the group meet? Are there limits to using the site if the meeting
falls on a holiday? Will the group meet on holidays and if so, is the
room available? Who is responsible for the facility, including
opening and closing it? Is there a cost for the facility? What paperwork/documentation will be required?
PLANNING A GROUP
What seating arrangement works best for the type of group and room you have selected?
Are food and beverages allowed in the room, and if so, do you want them available? Do you want volunteers to help with this or do you want to provide them?
What props do you need? (signs, timers, confidentiality agreements, waivers of liability, literature, meeting flyers, audio-visual equipment, tissue)
PLANNING A GROUP
How will you market the group and how will you recruit potential members?
PLANNING A GROUP
Are there costs associated with conducting the group? Handouts Refreshments Name Tags Room rental Advertising Speaker A/V equipment
PLANNING A GROUP
What will be the group rules? How will these be conveyed?
To what degree will sessions be structured and what is the overall design?
PLANNING A GROUP
How do you want to start each group?
Introduce self, say whether this is your first time at the group, whether you are on treatment
Indicate if you want group time to address an issue
Using one word, describe how you feel
PLANNING A GROUP
How do you want to end each group?
Allow ten minutes for check-out time
Go around room and give everyone an opportunity to state a final thought
Silent meditation
Read closing statement
PLANNING A GROUP
What will you do for the first group?
How will you assess the effectiveness of the group? Evaluation Tool
Feedback from members
Observation
PLANNING A GROUP
Will the co-facilitator and you have a regular time to check in and out with each other?
What is the mission for the group?
“Patience and perseverance have a magical eff ect before which
diff iculties disappear and obstacles vanish.”
– John Quincy Adams
Navigating Potential Problems
Navigating Potential Problems
Some typical needs and issues of HCV group members:
Inaccurate or confusing information
Fatigue
“Brain Fog”
Fear
Navigating Potential Problems
Stigma
Transmission issues
Treatment Issues
Complementary and Alternative Medicine
Navigating Potential Problems
Common Group Challenges:
Staying on timeDominators and/or members
who take up too much timeSide talkInterruptersPeople who are getting
obviously bad advice from others, esp. from medical providers
Navigating Potential Problems
Long silences or quiet peopleMembers who are
chemically-altered Angry peopleIncorrect info given during
groupBreaches of confidentialityWhen we make mistakes
Navigating Potential Problems
When outside people want to attend groups, particularly pharmaceutical reps
Handling dropoutsUnder what circumstances
will a member be removed or asked to leave the group?
Opinionated peopleHigh turn-outCrying
“We are all in the gutter,but some of us are
looking at the stars .”
- Oscar Wilde
Hepatitis C Support Group Facilitation
Workshop
BURN-OUT
Burnout is a common and preventable occurrence among caregivers. Support group leaders are vulnerable to burnout. Some signs of burnout are:
Feeling judgmental or resentful of groups members
Dreading going to the group
Remember to take care of yourself. Don’t take the group home with you. Talk to your co-facilitator or mentor. Don’t forget to breathe and have fun.
RESOURCES
Network with other facilitators
Support and learn from each other without a formal structure. Attend each other’s groups.
Roundtables – ask for support from local resources (quarterly, semi-annually)
RESOURCES
HCSP website www.hcvadvocate.org Hepatitis C Support Group Manual by Alan
Franciscus Hepatitis C Support Project Training Workshops
United States Department of Veterans Affairs Initiating and Maintaining a Hepatitis C Support Group: A How-To Program Guide
Thank You
www.LucindaPorterRN.com
Starting and Maintaining a
Support Group
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