1. PAIR MENTOR PILOT: PAST, PRESENT, FUTURE Kathryn Berry Carter, CAVS, CVA Director, Volunteer Services

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 1)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. 2)Provide the family with peer support while facilitating coping mechanisms and hope. 3)Empower providers and the family as partners in their communication with St. Jude staff regarding their child’s treatment. 4)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: Logistics Boundaries Emotional impact Content of sessions Sharing your story Part 2: Communication skills Critical times for families End of life When and how to call for help

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” Question AskedAverage Score My mentor was/is easy to talk with.4.8 My mentor offered/offers me advice and encouragement.4.6 My mentor made initial contact with me in a timely manner.4.6 My mentor did/does meet with me regularly.4.4 My mentor acted /acts as my advocate if I need him/her to.5 My mentor exhibited/exhibits integrity.4.8 My mentor gave/gives me the necessary support to help me cope with my situation. 4.6 I was/am happy with the frequency of the meetings with my mentor. 4.6 My mentoring relationship met my expectations.4.6 I feel better able to handle my child's situation after the mentoring relationship. 4.2 My mentor offered me other support options, activities or programs when I needed them. 5

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