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