Starting and Maintaining a Support Group

1. Starting and Maintaining a Support Group Lucinda K. Porter, RN, BA Author of Free from Hepatitis C www.LucindaPorterRN.com * Health Educator Hepatitis C Support Project

2. INTRODUCTION “It takes community to maintain a human.” - Earon Davis

3. 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

4. BENEFITS OF SUPPORT GROUPS “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

5. BENEFITS OF SUPPORT GROUPS • Creates an arena to discuss feelings and increase personal empowerment • Provides education • Enhances networking and identification of resources

6. 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

7. 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

8. 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

9. TYPES OF SUPPORT GROUPS “Diversity is the one true thing we all have in common. Celebrate it every day.” - Unknown

10. What is the purpose of the group? • Education • Information • Emotional Support Types of Support Groups

11. Who does the group serve? • Local community • Clients for specific agency or provider-base • Co-infected clients • Those in various phases of medical treatment • Those newly-diagnosed • Friends, family and others Types of Support Groups

12. What type of group will this be? • Open vs. closed • Drop-in vs. pre-screened or commitment-based • Ongoing vs. time-limited • Guest Speaker Types of Support Groups

13. What leadership model will this group use? • Trained healthcare facilitator • Peer-led • Designated facilitator vs. rotating • Co-facilitated Types of Support Groups

14. The Nuts and Bolts of Support Groups Practical Considerations When Planning a Group “No one can whistle a symphony. It takes a whole orchestra to play it.” - H.E. Luccock

15. GROUND RULES • Confidentiality • Cell phones, pagers silenced • No 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

16. PLANNING A GROUP • What kind of group do you want? • Education-based • Social and personal support and networking • Emotional support • Hybrid

17. 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

18. 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?

19. PLANNING A GROUP • When will we meet? • What will be the duration and frequency of meetings? • How many people will participate in the group?

20. 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?

21. 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?

22. 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)

23. PLANNING A GROUP • How will you market the group and how will you recruit potential members?

24. PLANNING A GROUP • Are there costs associated with conducting the group? • Handouts • Refreshments • Name Tags • Room rental • Advertising • Speaker • A/V equipment

25. 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?

26. 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

27. 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

28. 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

29. 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?

30. Navigating Potential Problems “Patience and perseverance have a magical effect before which difficulties disappear and obstacles vanish.” – John Quincy Adams

31. Some typical needs and issues of HCV group members: • Inaccurate or confusing information • Fatigue • “Brain Fog” • Fear Navigating Potential Problems

32. Stigma • Transmission issues • Treatment Issues • Complementary and Alternative Medicine Navigating Potential Problems

33. Common Group Challenges: • Staying on time • Dominators and/or members who take up too much time • Side talk • Interrupters • People who are getting obviously bad advice from others, esp. from medical providers Navigating Potential Problems

34. Long silences or quiet people • Members who are chemically-altered • Angry people • Incorrect info given during group • Breaches of confidentiality • When we make mistakes Navigating Potential Problems

35. When outside people want to attend groups, particularly pharmaceutical reps • Handling dropouts • Under what circumstances will a member be removed or asked to leave the group? • Opinionated people • High turn-out • Crying Navigating Potential Problems

36. Hepatitis C Support Group Facilitation Workshop “We are all in the gutter,but some of us arelooking at the stars.” - Oscar Wilde

37. 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.

38. 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)

39. 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

40. Starting and Maintaining a Support Group Thank You www.LucindaPorterRN.com