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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March 2019 Edition
Alberta Public Laboratories Pilots Commitment to Comfort at ACH
Alberta Public Laboratories at ACH has developed a strong partnership with Child Life Services to support the site-wide adoption of the Commitment to Comfort program. Starting in January 2019, the Lab has introduced new practices, processes, and resources to support and empower patients when completing outpatient blood work. These plans were developed in consultation with our Family Advisory Council and CAYAC. 

Now when patients check in, they can complete a Comfort Care Plan. This care plan helps the Medical Lab Assistant facilitate the best experience for the patient by using personalized information to build trust and identify the best distraction method to use during the procedure. 

Information about numbing creams and a communication tip sheet about how to talk with children during distressing procedures have been made available for patients and families. 

New processes are also improving the experience. These include shutting the door to minimize the effect one patient can have on another, offering patients the option to exit through another door, utilizing distraction kits, suggesting comfort positions, minimizing visual cues around preparation, incorporating positive language around pain, and offering a debrief with patients and parents/caregivers. There’s even a Wall of Courage, where you can write words of encouragement for others.

 All of these changes, are creating a better experience for everyone – patients, parents/caregivers, and staff. In the words of one young patient – “piano lessons are worse than blood work”! 
NICU Celebrates their Five Year Anniversary!
Ann Dang (bottom photo, top right) with NICU graduates.
The ACH Amphitheater turned into a carnival like celebration on February 26th - the date that the Edwards Family NICU opened five years ago. Families, staff, physicians and leaders had some wonderful moments reconnecting and remembering the past 5 years. In the words of Ann Dang, a mother of one of the first patients in the new NICU:

5 years ago when the Edwards Family NICU at the Alberta Children's Hospital was opened in February 2014, Parker was one of the first babies that occupied a room there. We spent the first 3 months of Parker's life under critical care. Our time there was some of the hardest of our lives, but also the most loved and supported.

5 years later, we get to celebrate the anniversary of this incredible facility, unit, staff, and families that walked the journey with us.

5 years later, the nurses who have seen us through the gravest of days got to see how well Parker is doing and know that he beat all the odds.

5 years later, there is still SO much love and support, and we are still so grateful.
Our First Virtual Consult
On February 27th, 10 of our Patient and Family Centred Care Network members came together for our first virtual consult. They connected via Skype Business and/or the telephone and provided their input and feedback for a ACH Infection and Prevention Control initiative.

As one advisor commented - “Listening to everyone helps stimulate ideas rather than only responding to the questions without other’s input.”

In the end we had a successful virtual consult, thanks to our consultants who created a consult that allowed for full participation of our advisors, cooperation of technology, and amazing advisors who supported trialing this new engagement medium!

In our follow-up survey of participants, everyone recommended that we use virtual consultations in the future. Overall I think it went really well. It was nice to be able to provide input without having to physically be at a meeting. I would definitely do it again. 

In The Spotlight...
A Peer Mentorship Experience
By Garrity Beales,
Family to Family Connections Peer Mentor

Navigating the healthcare system alongside a life changing diagnosis can be completely isolating and overwhelming. Knowing that there is someone who has walked a similar path as yourself, that can truly understand the thoughts and words that run through your brain—all hours of the day and night—and can provide that framework of empathy and validation is worth more than words can describe.

I wish I had been able to connect with a parent myself when walking alongside my son as he moved from NICU, to the unit, to home and stable, and then to the ER, PICU, and to Rotary Flames House, before passing away at home. 

Having someone to confide in, that ‘got’ what we were experiencing, and that, at any stage of our journey, could have provided insight into things that made their own experience more positive or what had diminished it, would have been extremely beneficial. 

To be able to offer peer support through Family to Family Connections is such an honor for me. Through my son, I’ve met so many amazing parents and caregivers, and the ability to give back and parent his memory through providing empathy and support to others is something that I cherish the ability to do. No one should walk these journeys alone and isolated, fearing our own thoughts and doubting our love for our children. 

Having someone alongside who can offer up a ‘yep, I get where you’re coming from, everything you’re experiencing and feeling is valid,’ is so important and I am truly honored to be a part of the Family to Family Connections team providing this service to families at ACH.
Engagement Tip For Staff
The next time you embark on a quality improvement (QI) or research project, consider involving patients and/or families in one or more of the following ways:

  • Identifying QI project focuses/priorities or research topics and/or questions
  • Developing project outcomes and/or evaluation strategy
  • Participating in other aspects of project/research design
  • Identifying recruitment and/or retention of subjects/advisors
  • Participating in data collection
  • Analyzing data or reviewing results
  • Sharing project/research information
Learning Opportunities
Wednesday, March 27th, 11:00am-12:00pm

Dr. Dawn Davies, palliative care physician at CHEO and Roger Neilson's House in Ottawa, will be presenting on:
Medical Assistance and Dying, and Mature Minors: where are we now?

"In June of 2016, the Government of Canada introduced bill C-14, which paved the way for medical assistance in dying (MAID). Part of the initial legislation specifically excluded minors from being eligible for MAID, however the government committed to performing an independent review to consider mature minors as persons eligible for MAID at some point in the future. Dr. Davies will provide some insight into the current state of the legislation, and the review to potentially include mature minors in the current legislation."

Click here to register.