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 2021 Edition
Celebrating our Volunteers
It's National Volunteer Week, a chance to recognize and celebrate the many volunteers who provide their input as patient and family advisors and support families as peer mentors. At the Alberta Children's Hospital we have over 200 advisors and mentors. This past year, despite the limitations of our current environment, they have together accumulated over 1300 hours of volunteer time. Given that these hours are usually completed in one to two hour intervals, this year's slogan "the value of one, the power of many" is very fitting.

We'd like you to meet a few of our advisors and mentors and to hear what others say about their contributions.
Like so many of the members of CAYAC (Child and Youth Advisory Council), Josh has raised his hand for many opportunities both within the group and beyond. He regular provides input for our PFCC Network. He provides a youth voice for the Connect Care Provincial Patient and Family Advisory Group. He is also a peer facilitator with the Teens Talk Transition Program.

It has been an incredible experience being a part of CAYAC for the past 6 years. I have learned about healthcare and have become passionate about effecting positive change. I have witnessed the power of collaboration in problem solving and the impact of teamwork in the delivery of quality healthcare. Providing a youth perspective has shown me that my voice matters. For me, seeing our group's suggestions come into fruition for the betterment of the patient experience has been most rewarding.
The PFCC Network feedback is invaluable to the development and the implementation of patient and family teaching materials and documents. We are grateful for the PFCC Network willingness to review drafts of program patient and family documents for us to gain further understanding of the patient and family experience and perspective.

Jill Bullock, Clinical Nurse Specialist, Oncology
Sarah is also very engaged as a CAYAC member. She recently organized online social events to keep CAYAC members connected and she has joined a number of other members on a transitions social media working group. She provides a youth voice for the South Health Campus Citizen Advisory Team

Being an advisor allows me to turn my personal experiences into valuable change for youth in Southern Alberta, and it’s an opportunity that never fails to teach me valuable lessons about the healthcare system. I’m passionate about improving the experiences of other youth for years to come and I really enjoy engaging in conversations about youth health with people of all backgrounds! 
I truly value the support I have received from our patient and family advisors for a variety of projects. Most recently, I received invaluable input for a patient safety project I am planning. The insightful contributions of patient and family advisors brought significant improvements to the design of our work and undoubtedly helped our team secure
funding for our project.

Dr. Jennifer Thul-Freeman, Physician Lead for Quality, ACH Emergency Department
Nicole's four year old son, Noah, pictured here, is the reason she has put her hand up to be a family advisor and a peer mentor. Over the past 3 years, she has used her family experience to contribute as a family advisor to the Parent EPIQ Research Project through the Neonatal Follow Up Clinic at ACH.

As I left the NICU every night for 66 days in 2016, I promised myself, and my tiny preemie, that I would use our experience to somehow try to brighten the path for those to take a similar journey. This would lead me to pursue many different volunteering roles from one to one mentoring to parent advising. I felt compelled to be involved in research initiatives because, the whole time my son was in the NICU, I knew that the medical professionals had the knowledge they had to save my baby because other NICU parents before me had said “yes” to research. Getting to collaborate with medical professionals about staying trauma-informed in engaging NICU families in research has been some of the most rewarding work of my volunteering journey.”
Tapuwa started volunteering with us 10 years ago. She is a peer mentor with Family to Family Connections and has been on our Family Advisory Council for 5 years. She also frequently responds to requests from the PFCC Network.

Being an advisor has been such an inspiring experience as I look at the remarkable journeys that my fellow advisors have traveled. It has also been a great privilege to be a voice at the table that is part of influencing the decisions made in our children's healthcare journey. As well, being a peer mentor has been so rewarding as sharing a lived experience can bring so much strength and hope to families.
It was great to talk and share feelings and know how to cope. Thank you for arranging this for me. As a new mom I really needed the assurance coming from a person who has experienced it. Many people say they understand but it’s not true.

Larissa - Requesting Family Connected to Peer Mentor
Jason provides a thoughtful voice as one of the fathers on our Family Advisory Council. He is also available as a peer mentor with Family to Family Connections.

Volunteering at ACH is a valuable opportunity to express gratitude and to be a voice that represents the families that use ACH services. I feel a sense of community as a Family Advisory Council member, and a deeper knowledge of family experiences that I am not a part of. Being council member has been both empowering and humbling.
Having access to the Family Advisory Council is essential to executing meaningful quality improvement work that will generate necessary ‘system’ level improvements to improve the patient/provider healthcare experience. For me, each visit to FAC has provided our improvement team with an ‘ah ha’ insight that changes the perspective of frontline leaders and staff and creates the space for change.

 Shauna Langenberger, Quality Consultant, Alberta Children's Hospital
Neirreth has used her experiences raising a child with autism to support other families both one to one and in a group setting as a peer mentor. She has also been a valued family advisor on quality improvement projects at the Child Development Centre.

Being a Family Advisor and Peer Mentor has given me an opportunity to share my lived experiences and perspectives to make a positive impact in enhancing the healthcare and well-being of families. It feels good knowing that I'm making a contribution to improving the care and services that families receive. As a Family Advisor, I have truly enjoyed working on projects and sitting on councils where I have had opportunities to connect and collaborate with other families, as well as partner with healthcare professionals. As a Peer Mentor, I have met families who have entrusted me with their stories and allowed me to walk alongside them in their Autism journey. There is something magical in watching courage and hope grow. Being a volunteer has been an amazing and rewarding experience
We are truly grateful to collaborate with the Family to Family Connections Peer Mentor Program. Each group benefits from the mentor’s lived experience, expertise and skill. Neirreth supports the group with compassionate listening and thoughtful vulnerability. She openly shares her successes and struggles, while leaving space for others. Kim quickly engages people with her honesty and sense of humor. She sparks hope, inspires advocacy and connects to people who are in their darkest moments. It is their contributions that makes the After Diagnosis Sessions so successful.

Mindy and Abby, Social Workers, ASD Clinic, Child Development Services
Melanie has joined us this year as a both a family advisor and a peer mentor. She is an ACH family advisor on a provincial committee working on standardizing services for communication interventions.

Having a mentor when our son was diagnosed with hearing loss gave me hope. Seeing families on the other side and realizing we have been given an amazing gift really encouraged me. Being an advisor and mentor allows me to use our experience to make a difference. I am excited to be able to support and encourage other families on their child’s hearing loss journey. I am very excited to be a part of this amazing team”
Thank you Volunteers!
We are grateful to Josh, Sarah, Nicole, Tapuwa, Jason, Neirreth, Melanie, and all of our Patient and Family Centred Care Network of advisors and peer mentors for your volunteer contributions! Thank you for taking the time to contribute wisdom from your patient and family experiences to improve the healthcare journey for others. Whether you contributed one hour or many hours this past year (or just made yourself available), together you have made a difference.

Photo by Vie Studio from Pexels
Coming June 9th - What Matters to You?
What Matters to You? (WMTY) Day is a worldwide movement putting the patient voice at the center of care, encouraging and supporting meaningful conversations between the patients and families who receive healthcare, and the staff, physicians and volunteers who provide it.
Taking part is easy. It includes 3 simple steps:
  1. Ask what matters
  2. Listen to what matters
  3. Do what matters.

For more information go to AHS What Matters to You?

If your area would like help coming up with ideas to participate, please email the ACH’s PFCC Team.
Please join us on June 9th, and every other day, to ask What Matters to You?