2. Designing and Implementing Peer Support Groups for Families Facing Serious Illness from the Point of Diagnosis

3. Framework for today Designing peer support program dealing with illness Branding and marketing the program Supporting families, volunteers and yourself

4. From the point of diagnosis, illness affects the whole family. A program of Hope and Healing

5. Tender Living Care Program began in 1993 Initiated by a mom who had cancer Several organizations in town supported start up and sent referrals Home visits done initially until numbers were large enough for groups

6. Design of the Program Peer support groups that meet for one evening a week for 8 week sessions with 2 week break between sessions Groups divided by age for children ages 3-18, Young Adults 19-30, Care giving Adults, Adults with Illness Two facilitators per group room, two Team Coordinators, Program Coordinator, Consultant Meets earlier in the evening than our Bereavement Program Families are called weekly for check in/reminder of groups

7. Branding the Program Create separate logo, mailing stamp, etc… Cautious of term “Anticipatory Grief” Offer support from time of diagnosis Separate from your Bereavement Program Allow families to get support without having to face the fact that their illness might lead to death Mindful of word choices and setting choices

8. Marketing the Program: Direct Service Provider E-list Create E-List of Direct Service Providers Hospices Illness Foundations Doctor’s Offices Hospitals Cancer Centers, Dialysis Centers, Etc Email Updated Session Flyers 4-6 weeks before session begins for display/distribution

9. Marketing the Program: Press Releases Press Releases Distribute at 6 weeks and at 3 weeks before program begins Keep separate from Bereavement Program Information

10. Marketing the Program Miscellaneous Outreach presentations Schools, Community Media – TV, Radio, Print Volunteers

11. Volunteers

12. Supporting Volunteers At start up volunteers needed to have Bereavement Program experience 30 Hour Training Offer Pre Group and Post Group to process things from group that came up for them Additional phone/email support Offer Trainings for additional skills

13. Families

14. Helping Families Phone call/s TLC Packet: Handouts and Book Intake/Family Meeting: feely hearts & quilts Welcome Packet First Night Follow up and ongoing support

15. Children

16. How do we help children? Tell the truth Listen to their feelings and help them express them safely Support their interests Support for the adults in their lives

17. Common Concerns of Children How will my life be affected? Did I cause this? Can I catch this? Will this happen to me?

18. What We Know About Children Children have an innate wisdom and drive that can help them find their way through difficult times. Each child will have a different way of finding their way through and a different timing. Loving, caring and attentive adults can help children in their process of dealing with these difficult times

19. When there is a death…. The Family Ask family if information can be shared with other families and volunteers if NOT in paper Attend wake/funeral if possible Provide the family an opportunity for them to return to TLC for their goodbye night/ritual Help transition the family to Bereavement when time is right for them

20. When there is a death Other families Contact families in groups to notify them of the death if appropriate Share wake/funeral details if appropriate Notify them if and when family is coming back for their last night with TLC. Support: Additional support and sensitivity to families who are dealing with terminal prognosis

21. When there is a death The Volunteers Contact volunteers to inform them May attend wake/funeral if helpful for them Check in and provide additional support if necessary Periodically create Memorial Nights for volunteers to honor those who have died and their families

22. Self Care: Lessons Learned Take the time to feel your feelings Attend wakes/funerals Journal Volcano Room Share with others Get support when you need it

23. Resources: carol@cgcmaine.org www.cgcmaine.org Bibliography Articles A Family’s Journey