1. The Power of the Family Voice: A Call to Action Carol Parry, Family Centered Care Coordinator Kim Graves, Ambulatory Education Specialist Cherylyn and Connor McRae, Parent Advisor & Son

2. Objectives  Describe how patient and family stories can influence decision making, shape attitudes and develop best practices  Learn about one model to prepare front-line staff to effectively partner with families  Partner with families for process improvement in changing the cultural norm

3. Hearing the parents’ concern  We don’t always do it well  At times, children with significant disabilities are perceived to be treated differently “My child is not going to be a success story”  Words and actions - or the lack of, can hurt

4. The call to action  Families also have positive experiences and are committed to making Children’s the best hospital  “Let’s create a culture at Children’s where there is no question that all children and teens, including those with special needs, are of great value”

5. Building the platform  Individual feedback  Focus groups  Parents and staff shared focus group summary Management group Departments  Hospital Steering Committee First time parents invited to present to HSC

6. Taking action – one solution  Vice President for Ambulatory Care Services required training to be developed for all frontline ambulatory care staff

7. Training Design  Clarifying the educational need Discussion and research  Use of a multidisciplinary team FCC coordinator RN clinicians Parent advisor  Interactive forum

8. Training Goals  Create a climate for open dialogue  Introduce power of the voice Staff Parent  Promote change in the cultural norm  Education through tools/resources

9. Training Evaluation  Staff report increased awareness, comfort level and practical learning  “One of the most important meetings I’ve ever attended as an employee of Children’s. The topic addressed are some of the core values we must address as part of Children’s mission”  “Particularly helpful to hear family’s perspective”

10. Our family’s voice Cherylyn and Connor McRae

11. What we learned  The family voice is compelling and motivates change Helps define the problem Provides direction for improvement  Value of multidisciplinary approach  Importance of everyone to receive training

12. Changing the culture  Providing the “negative” in a “positive” light to inspire culture change  Variance in readiness and starting point  Sustaining the gains

13. It’s a Journey  Use the power of the family voice to connect and transform  Build on successes  One step at a time – one conversation at a time

14. What Questions Do You Have?