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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. Objectives.

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the power of the family voice a call to action

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

objectives
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
hearing the parents concern
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
the call to action
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”
building the platform
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
taking action one solution
Taking action – one solution
  • Vice President for Ambulatory Care Services required training to be developed for all frontline ambulatory care staff
training design
Training Design
  • Clarifying the educational need
    • Discussion and research
  • Use of a multidisciplinary team
    • FCC coordinator
    • RN clinicians
    • Parent advisor
  • Interactive forum
training goals
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
training evaluation
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”
what we learned
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
changing the culture
Changing the culture
  • Providing the “negative” in a “positive” light to inspire culture change
  • Variance in readiness and starting point
  • Sustaining the gains
it s a journey
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