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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April 2022 Edition
Celebrating ACH's Volunteer Advisors and Peer Mentors
It's National Volunteer Week! We're pleased to introduce you to just a few of the 180 Patient and Family Advisors and Peer Mentors at ACH. Despite another challenging year, they contributed almost 2000 hours of volunteer time providing their input and feedback and supporting patient and families as mentors. This is a group of caring, giving individuals who want to make a difference - not for their own benefit but for the families of ACH - definitely Empathy in Action!
Amanda lives in a small community near Medicine Hat. She serves as a peer mentor and as a family advisor on a couple of committees and on the PFCC Network, bringing both her experience as a mother of an ACH patient and the experience of accessing services from a distance.

I chose to become a mentor because I do not want families to feel alone. I feel that I have an opportunity, maybe even an obligation, to ensure families facing a new diagnosis have a smoother journey than ours. 

Our experiences of navigating between ACH and our South Zone clinics, provides a unique opportunity to make a difference. The teams I've worked with as an advisor want the same and truly value our experiences.  As a Mom to a medically complex child, much of what we encounter feels out of our control. Being able to contribute and be a part of the change is empowering.
Having an advisor on our research team has been invaluable. Her lived experience has enhanced our understanding of the study feasibility and value. Her input has been key for the development of the research study design and the creation of materials for study participants. We look forward to continuing our partnership throughout the study stages!
Alicia Hilderley, Researcher, ACH

Mike provides thoughtful perspectives at the monthly meetings of the ACH Family Advisory Council (FAC). He is also contributes regular virtual input/feedback through our PFCC Network.

The Alberta Children's Hospital continues to do so much for us through our son's cancer treatment and beyond. The Family Advisory Council has been a great way for me to give back a little of what we've received. It certainly helps to see the positive impact that FAC has had on different incentives, across AHS. 
Sera is finishing up her second year as a member of the Child and Youth Advisory Council (CAYAC). She is actively engaged in the regular meetings of the Council and has also taken on working group involvement.

As someone who joined CAYAC while on the brink of pediatric to adult care, I wanted to provide my voice on provincial healthcare issues for youth. I chose to apply to become an advisor, as I wanted to assist in changing the healthcare system for the better, through implementing new ideas from my own experiences.

I also found that the role of an advisor provided me with the capability to become more outgoing in sharing my knowledge and opinions on various issues. As well, acting as an advisor has expanded my worldview in introducing me to a community of individuals from diverse healthcare backgrounds.
In consulting with CAYAC and FAC, we were able to have a full and rich conversation about values-based decisions and the role of Clinical Ethics at the Alberta Children’s Hospital. They were able to provide considered and useful feedback around the accessibility of the Clinical Ethics Service.
Virginia McLaughlin - Clinical Ethicist, ACH
Lynn is a peer mentor with Family To Family Connections. She shares about her experiences in group sessions for parents whose children have been diagnosed with ASD and does one to one connections.

I have chosen to be a F2Fc mentor because I wanted to give back to other families going through an autism diagnosis for their child. I remember having such a feelings of loss and isolation when my son was first diagnosed 4 years ago, and I wanted to provide hope and better understanding for families going through similar experiences. Working as a mentor, has helped me to contribute to the advocacy of other parents for their children, as well I have become a better listener.

My favourite part of being a mentor is seeing the progress of families and their children, and knowing that I helped navigate them towards a stronger, more secure future.
As a Social Worker I am often asked by families to offer resources and social connections particularly if their child has been diagnosed with a rare and/or chronic condition. Who best to offer advice, comfort. and support than families who have experienced similar situations. I am so thankful to Family to Family Connections who reach out to newly diagnosed families immediately and facilitate appropriate connections with others. I know many families have greatly benefited from this support and share that it lessens their experiences of isolation and fear and increases a sense of community.
 Claire Robbins, Social Worker, ACH
Julia has been involved for several years as a peer mentor with Family to Family Connections. She has considerable experience sharing about her experiences with other families in one to one connections and in group settings. She recently joined a rural group of parents with children who have speech difficulties to share about her experiences.

This role gives me the rare chance to open up my heart and share with other families the journey my son and I have recently traveled. It gives us all the opportunity to genuinely connect - so parents may not feel as isolated and scared as I once did.
Julia was great - she attended one of our meetings through Zoom and gave great advice and support to the parents.
Thanks for putting me in touch with her. Great program.  
Garth Schindel SLP, Didsbury Hospital
Danny showed his commitment to CAYAC by driving from Red Deer for meetings for his first few years. Now he is a student at the University of Calgary. He is one of the six members retiring from CAYAC this year. Not because they want to - but because they have reached the 21 year age limit!

I have gained knowledge and leadership skills from being an advisor. My contributions as a CAYAC member have had touchpoints throughout AHS. 
Lindsey is a peer mentor who does one to one connections and co-facilitates online sessions for NICU families. She is also an active advisor on NICU committees and the Family Advisory Council.

I find immense joy in volunteering and being an advisor with the ACH. During our 74 day stay in the NICU & Unit 2 I knew that I needed to give back and be involved in some capacity. I feel every meeting that my involvement and contributions help to bring positive change and make it easier to navigate difficult situations for families that need to use the hospital for any reason.

I have so much appreciation for medical staff that really want to be there for families, and involve parents and caregivers in the process in the safest and most informative ways. I have found a great sense of community and have made some lifelong friends within this role.  
Patient and family focus groups are priceless. Capturing key stakeholder perspectives is essential and undoubtedly uncovers important information that clinicians have not considered. It is one of the best ways to mine for gold!
Candice Natrasony, Physiotherapist, Neuromotor Clinic
(Candice partnered with the PFCC team to host a focus group to get the
patient and family perspective for a proposed pilot program.)
Thanks to all our Volunteers
We are very grateful to all of our volunteers who demonstrate empathy in action in your ongoing commitment as an advisor and/or peer mentor at the Alberta Children's Hospital. Together you have contributed to the ongoing improvement to the quality of care at the hospital and to helping families grow in their understanding and confidence as caregivers. You are appreciated!