Connecting, Empowering and Supporting Families Through Peer Connections: The ParentWISE ™ Approach

1. Connecting, Empowering and Supporting Families Through Peer Connections: The ParentWISE™ Approach The Third International Conference on Patient and Family-Centered Care Seattle, July 31, 2007

2. Session Objectives After attending this session, you will be able to: • Explain crucial steps in developing an effective hospital wide peer (parent) support program; • Describe the components of a hospital-wide parent volunteer orientation process; and • Recognize the benefits of a structured program to support parent (peer) volunteer recruitment and retention.

3. Presentation Overview • Welcome, Introductions, Objectives • What is ParentWISE? • The Seeds: Carrie’s story and our legacy programs • Growing ParentWISE • Questions & Answers

4. What isParentWISE™ • Part of CMH commitment to family-centered care • We see parents/families as experts • Family Advisory Board • Kids Advisory Board • Project DOCC • ParentWISE

5. What is ParentWISE™ • ParentWisdom In Shared Experience™, a service offered BY parents FOR parents. • A component of family-centered care, provides trained and supervised volunteer “support” parents (parent-mentors) as resources for families during a child’s hospitalization and treatment.

6. What is ParentWISE™ ParentWISE Goals • Connectparents with the families of current patients; • Empower parents to partner effectively with their child’s care team; and • Support families in managing the stresses of having a very sick child.

7. The Seeds: Carrie’s Story • Getting to the hospital/Surviving the NICU • Why come back? • Becoming the first NICU volunteer • How having a “program” helps me • How my family’s doing today

8. The Seeds: Carrie’s Story How having a “program” helps me: • Orientation helps determine if/when one should come back as a volunteer • Feeling supported as a volunteer • Better prepared to cope with different situations • Dealing with boundaries • Knowing the resources • An extension of the team

9. The Seeds: Legacy Programs • 1987- started by a family in Hematology/Oncology (HEM/ONC) • 2001 – introduced into Solid Organ Transplant (SOT) program • 2003 - Family Advisory Board instigates expansion and coordination • 2004 - Hospital Strategic Goal: The program will be available to all in-patient families

10. Growing ParentWISE™ Crucial steps – The “Program” • Leadership support and funding • Strategic program design • Learn from experience • What does the hospital system require? • Phased roll-out • Marketing the program • Staffing

11. Growing ParentWISE™ How ParentWISEWorks • All volunteers supervised by a coordinator • Offers in-person and/or telephone support during admission and after discharge • Volunteers may offer Resource Guide/Parent Journal • Parents learn about ParentWISE through staff and posters/brochures • Parents can be referred or self-refer via the referral line, 773.880.4119

12. Growing ParentWISE™ Crucial steps – The People • Program Coordinators • Part of the care team • Screen and assess all potential volunteers • Facilitate classroom-based orientation • Facilitate “matches” by diagnosis, experience • On-site volunteer supervisor and resource • Available through referral line & page

13. Growing ParentWISE™ Our other Program Coordinators: Alicia Aldas, Spanish Georgia Pyne, Palliative Mary FioRito, Oncology Brad Tunis, Transplant

14. Growing ParentWISE™ Crucial steps – The People • The volunteers • Parents -- the persons making day-to-day health care decisions for the child • Peers – patients who have received care • Eligibility guidelines – at least 1 year post “discharge”, 5 years post bereavement • Complete a special training program

15. Growing ParentWISE™ “Core” Volunteer Orientation • Program Overview • “Healing Presence” • Sharing Stories • Working with Families, Referrals, Self-care • Cultural Awareness • Listening Skills and Conversation Tools • The Volunteer as Part of a Team

16. Growing ParentWISE™ Other Orientation Components • Hospital tour • Service/unit specific material • Mentoring visits (shadowing) • Debriefing

17. Growing ParentWISE™ The Volunteer Role • Varies by setting • ParentWISE volunteers make two types of visits: • General visits with parents throughout the hospital • Specialist visits with parents with whom they have been matched due to diagnosis or treatment protocol

18. Growing ParentWISE™ Growing Pains • Continuing to grow the volunteer base • Extra demands on volunteers • When parent advocacy bumps up against staff efforts – trust building and responsiveness • Performance measurement • Demonstrating cost effectiveness • Measuring hope

19. Growing ParentWISE™ The benefits of a structured yet flexible program include: • A foundation for program growth • Outpatient clinics • Spanish speakers • Patient peers • Palliative care • A foundation for volunteer recruitment and retention

20. Growing ParentWISE™ Future Plans: • Create 100% staff awareness of ParentWISE • At least one volunteer per inpatient floor per day? • Volunteer support for all outpatient clinics? • Strong palliative care presence? • And…?

21. ParentWISE™ Speaker Contacts Referral Line 773.880.4119 Michelle Mascaro, Manager Gale Morgan-Williams, Coordinator Carrie Weaver, Volunteer