PFCC - Newsletter

You can learn about Patient and Family Centred Care activities at Alberta Children's Hospital by reading our monthly e-newsletter - Together We're Better. This newsletter will give you insight into Family Centred Care Initiatives, profile our Family Centred Care champions, and keep you up to date on upcoming education opportunities. Archived copies are available on the FCRC website.

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May 2018 Edition
Celebrating Excellence in Patient and Family Centred Care at the Alberta Children's Hospital
Three Alberta Children's Hospital programs were nominated for the AHS President's Excellence Awards in the Patient and Family Centred Care Category. These programs demonstrate the innovative and collaborative efforts happening at ACH to improve the quality of the patient and family experience.  

Hospital at Home Program
Hospital at Home Team

This program was a response to patient, family and staff feedback regarding the family impact of time spent in the hospital. It is the first of its kind in Canada to provide sub-specialty oncology care in the home. Specialized oncology nurses deliver therapies to children in their home, which includes many types of chemotherapy, medication and supportive care. 

CCAN Education Working Group

Caring for children with complex airway needs (CCAN) with a tracheotomy and/or vent requires families to have specialized knowledge and skills to safely care for them at home. A multidisciplinary working group including family advisors worked together to develop a comprehensive, standardized education curriculum and process for both caregivers and health care providers. (see online resources)


The Children's Hospice and Palliative Care Service (CHaPS) Aid for Symptoms and Serious Illness Support Team (ASSIST) partners with the primary physician/care team to provide an extra layer of support for families of children with life limiting conditions. This care
model provides continuity and convenience for families and allows ASSIST to develop relationships with the child, family and healthcare providers, and supports communication between them. 

Last month, Catherine Morrison (PFCC Manager), Marie McNaughton (Family & Youth Engagement Coordinator) and Juliana Harris (PFCC Project Manager) had the incredible opportunity to attend the Beryl Institute's Patient Experience Conference in Chicago. We were part of a global community of healthcare participants, with diverse representation of senior level stakeholders and care facilities from over 20 countries.

We also had the opportunity to be an e-poster presenter at the conference, sharing our robust patient and family engagement framework that guides our work here at the hospital. 

A key message at this year's conference was best described by Jason 
Wolf, President of the Beryl Institute, when he stated that "we are changing healthcare by advancing an unwavering commitment to the human experience." A human experience that includes both the experience of the patient (and family) and the experience of everyone else supporting healthcare - clinical and non-clinical. It is through this expanded perspective that we can make a difference for the betterment of countless lives.

Our PFCC team left the conference energized knowing that there is a lot of things we are doing really well here at ACH to support the patient experience and also excited about pursuing new ideas and opportunities. Stay tuned.

The Ann & Robert H. Lurie Children's Hospital of Chicago

While we were in Chicago attending the Beryl Institute conference, we visited the Ann & Robert H. Lurie Children's Hospital where Susan Ruohonan, Senior Director, Family Services, graciously provided us with a tour. We learned that 6 years ago they moved to their current downtown location. The hospital currently has 233 beds, 70+ pediatric sub-specialties and sees over 148,000 patients per year. In 2017-2018, it made the honor roll for one of the Best Children's Hospitals in the United States.

As we toured the hospital, it was quite evident that there was strong patient & family, staff, and community engagement in the design of the hospital. They had a lot of similar patient and family spaces and services as ACH has, such as a learning centre, family rooms, spiritual space, and peer mentorship. A couple of unique spaces and services they offered included their Get Well Network TV programming service, displays with interactive features, and electronic check-in kiosks for appointments. The hospital also partnered with the Shedd Aquarium, the Field Museum, and the Art Institute of Chicago which all donated unique installations that could be seen throughout the hospital.

To learn more about the Ann & Robert H. Lurie Children's Hospital, click here

Shedd Aquarium Interactive Display
Family Learning Centre

Join the Beryl Institute

Did you know? If you are a Patient and Family Advisor at Alberta Children's Hospital or you are a staff member that supports Patient and Family Advisors, you can gain membership access to The Beryl Institute. As a member, you have access to numerous resources including white papers and the PX Journal, community forums, learning opportunities, and notification about events.

To request access, email

Upcoming Events - Mark Your Calendars!
What Matters to You ...

On June 6 have a conversation about what matters.

If you are a patient, client, or member of the public, we invite you to reflect on what matters most to you, and to share it with your healthcare provider. It's that simple!

If you are a health care provider, ask your patient, client and/or family"What matters to you?" and then listen, engage and support. 
If you are an AHS employee not providing direct patient/client care, you can still participate! Simply ask your colleagues "What Matters to You?" Taking this opportunity to engage with each other will help foster trust, empathy, and build stronger relationships.

You can share your stories and photos on Twitter, Facebook, or Instagram using #wmtyAB. Follow @AlbertaPFCC on Twitterto keep tabs on the movement.
Quote of the Month 
"The [patient and family] doesn't care what you know until they know that you care."
Georgina Garcia, Executive Director of Kaiser, Permanent, West Los Angeles Medical Centre (Patient Experience Conference 2018)
Learning Opportunities

QHI Webinar: Wednesday, May 30, 2018 from Noon-1 pm
What the #%$*#!!??? is a Design Sprint?

Sprints use a 5 phase process to rapidly solve big challenges, create new products or services, or improve existing ones. In this webinar you will learn:  What a design sprint is, the 5 phases of a design sprint, the kind of problems can be addressed in a sprint, and how sprints have been used in AHS.

CAPHC Webinar: Wednesday, May 30, 2018 from 9-10am (MST)
Honouring Jordan's Principle: Putting Kids First

Jordan's Principle is a legal rule to ensure that First Nations children have access to the services they need, when they need them. This session will provide an overview of the Tribunal's legal orders and discuss how practitioners and community members can ensure First Nations children, on and off the reserve, receive proper benefit from Jodan's Principle. 

CAPHC Webinar: Wednesday, June 3, 2018 from 9-10am (MST)
Alberta Transition to Adult Care Innovations

A team from Alberta Health Services will describe the initiatives and research that has brought together the children's hospitals, the community and the rehabilitation hospital through a collaborative research project to improve outcomes for children and families during and after transition.

Your PFCC contributing writers: Juliana Harris, PFCC Liaison; Kim McLelland, PFCC Liaison; Marie McNaughton, Family and Youth Engagement Coordinator.