Support Groups: Benefits, Guidelines, and Best Practices

1. Support Groups : Best Practices Carrie Collins-Fadell, MPA Carrie@biaaz.org

2. Carrie Collins-Fadell, MPA • Brain Injury Alliance of Arizona • Network with/ refer to dozens of groups in AZ • Run 10 groups • Executive Director New York State United Way • Funder of support groups- new parents, anger manage • Alzheimer's Association Michigan Chapters • Part of management staff for peer-led caregiver groups Personal experience – 10+ years international childless stepmom support group as moderator/ member *Chihuahua disclaimer, I am working from home today

3. The Brain Injury Alliance of Arizona is: A statewide nonprofit dedicated to improving the quality of life for individuals with brain jury and their families The only organization in Arizona to provide services / education for all types of brain injuriesWe serve people at all points after a brain injury. We serve those who self-report a brain injury All our services are complimentary to families and survivors Founded in Tucson 35 years ago by parents

5. Current Infrastructure & Additions • BIAAZ Support Group Landscape • Rules We Live By • Case Study of Attendee: Billy B. • 2019 Hits & Misses • Story of a Successful Start-Up: Brain Cave • Analyzing New Additions from Good Idea to First Meeting • Trends • Let’s Not Talk About It- Discussion Groups v. Support Groups • Formal Referral/ Use Online Groups Group Talk Thoughts, Comments, Questions

6. Support groups bring together people who are going through or have gone through similar experiences. For example, this common ground might be cancer, chronic medical conditions, addiction, bereavement or caregiving. • A support group provides an opportunity for people to share personal experiences and feelings, coping strategies, or firsthand information about diseases or treatments. • For many people, a health-related support group may fill a gap between medical treatment and the need for emotional support. A person's relationship with a doctor or other medical personnel may not provide adequate emotional support, and a person's family and friends may not understand the impact of a disease or treatment. A support group among people with shared experiences may function as a bridge between medical and emotional needs.

7. Benefits of participating in a support group may include: • Feeling less lonely, isolated or judged • Reducing distress, depression, anxiety or fatigue • Talking openly and honestly about your feelings • Improving skills to cope with challenges • Staying motivated to manage chronic conditions or stick to treatment plans • Gaining a sense of empowerment, control or hope • Improving understanding of a disease and your own experience with it • Getting practical feedback about treatment options • Learning about health, economic or social resources

8. Possible risks Support groups may have drawbacks, and effective groups generally depend on the facilitator to help steer away from these problems. These problems may include: • Disruptive group members • Conversation dominated by griping • Lack of confidentiality • Emotional entanglement, group tension or interpersonal conflicts • Inappropriate or unsound medical advice • Competitive comparisons of whose condition or experience is worse

9. Surveying the landscape • BIAAZ supports and refers to dozens of support groups that draw brain injury survivors together around factors such as mechanism of injury, age, gender, geographic area, and more. • For our funded support groups we use neuro – professionals , not peers.

10. Info to BIAAZ Support Groups • Job Description • Invoice Requirements • Confidentiality Statement Participants Held To • Guidelines & Principles

12. Brain Injury Alliance of Arizona Support Group Guidelines and Principles: • Provide a confidential environment • Person first language and attitude • Encourage active, involved listening for everyone • Give participants the sense that others care and that each person is being heard • Enable participants to meet and accept their needs • Allow participants the opportunity to be really understood • Make participants aware of needs and strengths they have in common with others • Provide a place for participants to find courage and take risks • Create an atmosphere where participants can get in touch with themselves and their peers • Accept that participants will express both positive and negative views and will not be judged or labeled • Provide a support group that is led by trained facilitator

13. Define what support will look like • BIAAZ will assist support group leaders with • Flyer development • BIAAZ Printed resources (when available) • Conflict resolution (if necessary) • Participant follow up (when requested) • Stipend • BIAAZ does not cover expenses for • Refreshments • Meeting Space • Activities • Personal Liability Insurance

14. Attendee feedback: Billy B. • Attends PHX support group at hospital • Group divides caregivers into two groups: spouse/ partner or parent / siblings All three groups are lead by neuropsych • Utilizes both online and in-person groups • 50 year-old male, series of acquired brain injuries • Isolated for one year post major injury Referred by hospital program partnership with BIAAZ and fellow survivors • 30 year-old son is care partner, unmarried

15. Initial support group experience was at independent living center at an all-disability support group. First impression, did not think a lot of it pertained to him and did not feel supported at the all-disability support group. Group was peer led and dominated by 2-3 “super participators”. • Referred to brain injury group, enjoys it and attends. He and the group take responsibility for the group culture/ dynamic and are protective of it even broaching the new facilitators with feedback about those offering medical advice, super participators, and overly structured topics that don’t allow for group learning. • His personal barriers to attendance are transportation/ driving at night, neuro-fatigue, and as he recovers and adds more things to his day it becomes more complicated to attend. • His care partner stays in with the survivors and has found he might be a survivor himself.

16. Favorite support group memory and advice from billy • Favorite experience with group- Billy was in the hospital for epilepsy monitoring and all of the survivors stopped by his room after the meeting. He liked that he was not forgotten even though he could not attend! • Advice to someone starting a support group– Please listen, let the survivors ask questions, pick topics, let the survivors talk and interject. Be judgement free, compassionate, and willing to learn. (He valued that much more than someone who has technical / clinical knowledge.) He said a “know-it-all” is not going to make people feel comfortable.

17. Utilization of online support groups by billy • Peers introduced Billy to online support group Amy’s Tribe. He likes the constant flow new people (caregivers and professionals) available in online groups. He likes that there are people from all over the world. • The online groups can be difficult. He is a positive person, there are many people isolated and with serious needs, particularly online Lots of talk of suicide online • Billy feels in-person groups seem to be more positive Lots more negativity online, it hurts and when you have someone in a area with fewer resources

18. 2019 Support group Misses

19. 2019 Support group hits

20. Look at a successful new group • Committed 6 month trial – create urgency? • Paired peers to facilitate – hyped the been there / done that of the facilitators • 18+ Men Only • Hold closed coffee shop to reinforce casual environment • Pull in those not going to other support groups

21. Thoughts from Steve…… • Facilitators are involved in the community and I know both he and I share the group personally with our networks. • I also know from feedback that the guys that have attended, that they were looking for a discussion group for men that discusses the issues that men face with TBI’s. • Asking the attendees to invite a friend each week helps spread the outreach to the TBI community. • Facilitators personally inviting my friends and individuals I know within the TBI community. • Facebook post and full page in the Noggin brought awareness of the group

22. More Thoughts from Steve…. • Keeping the group on the forefront of individuals minds helps promote the group • Just as with a business, treating the group as group that needs to be marketed and continuing those efforts of marketing the group as if it were a business helps maintain consistent awareness • Consistence of reaching out to other organizations that support the TBI community   • The entire BIAAZ staff and volunteers believed in Brain Cave • Market, Market, Market and Market some more!

23. Start- up thoughts

24. Trends • Let’s Not Talk About It- Discussion Groups v. Support Groups • Formal Referral/ Use Online Groups

25. Online support groups offer benefits and risks that are particular to that format. It's important to consider these factors before joining an online group. Benefits of online groups include: • More frequent or flexible participation • Opportunities for people who may not have local face-to-face support groups • A degree of privacy or anonymity Risks of online support groups include the following: • Communication only by written text can lead to misunderstanding or confusion among group members. • Anonymity may lead to inappropriate or disrespectful comments or behaviors. • Participation online may result in isolation from other friends or family. • Online communities may be particularly susceptible to misinformation or information overload. • People may use the online environment to prey on people, promote a product or commit fraud.

26. Group Chat Thoughts, comments, questions

27. Thank you • CARRIE@BIAAZ.ORG