The Power of the Family Voice:

A Call to ActionCarol Parry, Family Centered Care Coordinator

Kim Graves, Ambulatory Education Specialist

Cherylyn and Connor McRae, Parent Advisor & Son

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 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 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 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 Vice President for Ambulatory Care Services

required training to be developed for all frontline ambulatory care staff

Training Design Clarifying the educational need

Discussion and research

Use of a multidisciplinary team FCC coordinator RN clinicians Parent advisor

Interactive forum

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 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”

Our family’s voice Cherylyn and Connor McRae

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 Providing the “negative” in a “positive” light to

inspire culture change

Variance in readiness and starting point

Sustaining the gains

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

What Questions Do You Have?