C.S. Mott’s Patient & Family Centered Care Program “Changing a Culture One Story at a Time”

….stories lead to wisdom.” “Facts bring us to knowledge but…. ~Rachel Naomi Remen, Author Kitchen Table Wisdom

What is PFCC? Dignity and Respect Dignity and Respect Information Sharing Information Sharing Participation Participation Collaboration Collaboration Source: IFCC

“Being a sick kid sucks. Having a sick child is about the most frightening thing that can happen. Never lose your compassion or empathy. It may be routine to you, but not to the patient.” ~ Alicia, Mom of Ben

Our Tipping Point: Parent Comments “It would have been nice to be able to spend the night with my child.” ~ ~Anonymous, Press-Ganey Survey “After fighting this battle with Ryan for more than four years, only one nurse contacted us when our son died. We felt very much that we were just another one of their studies. As soon as he relapsed, they discharged us and they moved on.” ~mom of Ryan “While they inserted tubes in my daughter they pushed me aside and then I had to meet her in her room while they wheeled her there. I would have liked to be given the opportunity to walk with them and maybe even encouraged to do so.” ~Anonymous, PFCC Family Advisor Survey

Surveys/Materials Review In-services/meetings Focus Groups 642 Unit committees added 461 Hospital committees adding families -109 Lean committees adding families --7 External conference presentations -24 PFCC Program Participation and Growth Volunteer Family Advisors: >170 on-line members 50 on-site members 50 on-site members Staff Participants: >100

Patient & Family Advisory Council Inaugural Meeting - January, 2008 Over 4000 hours of effort in Term 1: ! MissionEmpowermentEngagementFlexibilityFulfillmentInclusivenessInformedPartnershipVoice

Phases of PFCC Program Roll-out Raise Awareness Raise Awareness Educate Staff and Families Educate Staff and Families Hold Staff Accountable Hold Staff Accountable Continuous improvement of care and processes.

Phase 1: Awareness