PAIR Mentor Pilot: Past, Present, Future

1. Kathryn Berry Carter, CAVS, CVA Director, Volunteer Services PAIR Mentor Pilot:Past, Present, Future

2. Why Parent Mentoring? • Enhance family-centered environment • Personal experience of FAC members • Exists informally; opportunity to formalize • Evidence based research • Right thing to do; be the best in FCC

3. Benchmarking • Training at Lucile Packard Children’s Hospital, CA • Site visit, Children’s Memorial Hospital, IL • Q/A Session, LeBonheur Children’s Hospital, TN • Site visit, Cook Children’s Medical Center, TX

4. Why Pilot Method?

5. Stated Grant Goals • Offer newly diagnosed families at St. Jude a trained parent-mentor, offering the unique understanding and encouragement that another parent who has walked a similar path can provide. • Provide the family with peer support while facilitating coping mechanisms and hope. • Empower providers and the family as partners in their communication with St. Jude staff regarding their child’s treatment. • Provide a resource of services offered by St. Jude and the community.

6. PAIR Mentor Pilot Scope • Limited scope: Solid Tumor and Leukemia Services • March, 2012 – August, 2012 • 3 Mentors/ 12 Mentees Parents Assisting Inspiring Reassuring

7. Pilot Team Members • Administrative leadership: Volunteer Services Director, Admin, Intern • Parent-led by 4 FAC members • Interdisciplinary staff team • Psychology • Faculty sponsor

8. Mentor Identification • Off active therapy • Positive treatment outcome • Local • Referrals from staff • Successful screening interview

9. Mentor “On-boarding” • Background check • Occupational Health clearance • Volunteer orientation • 6 hour training, given by implementation team • Shadowing and competency sign-off

10. Training Themes Part 1: Part 2: Communication skills Critical times for families End of life When and how to call for help • Logistics • Boundaries • Emotional impact • Content of sessions • Sharing your story

11. Mentor Boundaries • Mentors are: • Companions on the journey • Good listeners • Fully present • Peer supporters • Referral sources • Providers of coping strategies • Promoters of staff/parent partnerships • Role models

12. Mentor Boundaries • Mentors are NOT: • Family members or friends • Providers of medical information • Caregivers, babysitters, messengers, chauffeurs • Counselors

13. Match Process • New family referred by psychosocial team through rounds • Parent volunteer invites those referred • Upon acceptance, VS matches • Mentor makes contact within 48 hours

14. Progress Report • Number approached: 28 • Matches in progress: 12 • Solid Tumor service: 8 • Leukemia service: 4 • Number of sessions/ encounters: 89

15. Progress Report • Place of encounter • Housing facility • Hospital public areas • Clinic • Inpatient areas • Outside hospital, including one encounter at a McDonald’s

16. Mode of Communication

17. Mentor Encounters: Content • Family issues • Coping and acceptance • Marriage and financial challenges • How to take care of an immuno-compromised child • Partnering with staff and communication • Nutrition and dietary challenges • Practical issues

18. Mentoring Skills Used

19. Mentor Debriefing

20. Pink/Red Flags • Excessive parental worry/ anxiety • Family/ spousal conflict • Concerns regarding siblings • Rule breaking

21. Outcomes/ Stories

22. Mentor Feedback • Mentor focus group, 6/21/12: • Every encounter different • Adequately supported; self and for mentee • Flag process helpful • Problems we uncover help staff to dig further; none feel trust has been eroded • Training fully prepared me • I have a unique perspective; role model • I feel rewarded by this experience; give back

23. Mentee Feedback * Likert scale, 1 being “Disagree” and 5 being “Agree”

24. Mentee Feedback • “I am so comfortable with my mentor, I really enjoy talking with her.” - Shanda McLin • “I don’t know what I’d do without my mentor. I enjoy talking with her.” - Tara Gibson • “I appreciate this program so much. It is helpful having someone to talk to who has lived this journey.” - Kathy Hagan

25. Staff Comments “I am impressed with the compassion and level of dedication our parent mentors demonstrate. Rather than a task to complete, it appears to be a calling they feel compelled to honor.” - Brent Powell, Chaplain Services

26. Staff Comments “Mentors give families an opportunity to talk to someone who actually understands what it is like. I can give advice until I am blue in the face, but if they hear the same words from another parent, it seems to make perfect sense to them. I think it meets a need for socialization and partnership that we can't always provide within our clinical roles.” - Solid Tumor clinic staff member

27. Future Vision • Institution-wide expansion to all services • Mentors seen as part of the team, valued for unique perspective • Mentors for all who want them; parent may self-refer • Promotional materials widely distributed • Increased resources; manpower, operations budget • Recruitment of additional mentors

29. Questions? PAIR Mentor Implementation Team Front row, left to right: Betsy Lambert, Monica Dempsey, Malise Culpepper, Catherine Greenslade Back row, left to right: Alexa Deghand, Kathryn Berry Carter, Wendy Avery, Alicia Huettel, Judy Hicks, Jennifer Harman Not pictured: Debbie Higgins, Brent Powell, Elizabeth Lee, Belinda Mandrell, Nancy West, Teresa Hammarback, Dr. Pappo, Dr. Baker, Brin Schaechtel