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 2019 Edition
NDD Project offers Care Coordination for Families
The Neurodevelopmental Disorders (NDD) Care Coordination Project is a family-centred and team-based project for families of children with an NDD diagnosis (Autism and/or ADHD) and significant medical issues. Care Coordinators work with families to coordinate care and access services across health, community and the school system.

Families are enrolled in the project for approximately 12 months. During this time, a primary aim of Care Coordination is to empower families to build the self-management skills needed to advocate for their family in the future. By keeping families at the heart of the project, the NDD Care Coordination Project has already been making positive impacts for families.

Access to a Care Coordinator has helped families navigate existing resources and improve communication with their care team. “When families are discharged from Care Coordination, they tell us they are better at identifying and accessing the support and resources they need,” states Nadine Gall, Program Manager.

The Care Coordination project is generously funded by the ACH Foundation’s Owerko Family Fund for Brain Health. For more information, contact: or visit:
Being There: Pam's Story
Pam Kai is one of our active peer mentors. She connects with families through one to one connections, ACH group teas, and at the bedside of the NICU. The story of her journey to becoming a peer mentor has been captured as a part of the series, Stories for Caregivers.

Click here for more information about Family to Family Connections.
Youth Advisory Councils Collaborate
Our Child and Youth Advisory Council (CAYAC) welcomed members from the Stollery Children's Hospital Youth Advisory Council to their March 16th meeting. This meeting was another opportunity to get to know each other better. The groups have collaborated on a couple of consultations this year via telehealth and are hoping to further deepen their ties. Both groups will be meeting on the same dates next year to allow for more collaboration on province-wide consultations.
Noah and Jacob from the Stollery Youth Advisory Council, centre of front row, pose with members of CAYAC.
In The Spotlight...
This month, CAYAC will be reluctantly saying good-bye to two Support Mentors who were also long time members of the group. Its hard to imagine a meeting without a least one of them there!

Marisa Vigna (right) joined as a member in 2005. She is now a Junior High Teacher. "Being a member of CAYAC has given me the opportunity to witness the power of the youth voice and how it can positively impact healthcare. The youth I have met through this group have been very inspirational. By sharing our experiences with others, we have been able to make improvements to the healthcare system, which has been very rewarding. Moving into the role of Youth Support Mentor for CAYAC has allowed me to provide guidance for the members to help them find their voice. Watching the youth become confident, passionate, and effective leaders, assures me that the incredible legacy of CAYAC will continue. It has been an honour to have been a part of such an amazing group!"   

Emily Macphail (left) has been with CAYAC since 2008. She is currently a MD/Ph.D. Student. "When I joined CAYAC as a teenager, I wanted to use my experiences in the healthcare system to impact the provision of care to young people. I never anticipated the amazing individuals I would meet, the opportunities I would have, and how important CAYAC would be in helping me feel to like my voice mattered. Over the past several years, I've been lucky to stay involved as a mentor/volunteer, and doing so has only increased my belief in the importance of patient- and family-centred care and my understanding of how integral positive care experiences are for health and help-seeking in adolescence and beyond. The youth who make CAYAC what it is are a constant reminder of how capable, self-aware, and insightful young people can be, and they have instilled in me the importance of letting adolescents have the freedom to lead and grow in an environment where they are safe and supported."
Learning Opportunities
Wednesday, April 24th - 9:00-10:00am

Mental health of immigrant and refugee children and youth in Canada: pathways to care and health system utilization.

This session will describe trends in mental health service utilization in immigrant youth in Ontario and explore how services for mental health care are being accessed in immigrant youth. It will also discuss immigration-related factors that enable and act as barriers to mental health system use by and accessibility for immigrants.

Click Here to Register
Wednesday, May 8th - Noon - 1:30pm
Alberta Children's Hospital Theatre

Advancing Care Transitions: ACH Patient/Family Perspectives and Emerging Practices

  1. Understand impact of transitions to adult care from the patient/family perspective.
  2. Learn about emerging practices in care coordination aimed at creating more seamless transitions across health, education and community services. 
  3. Learn about ACH specific resources helping patients/families and care teams navigate care transitions across life's trajectory.

Click Here to Register
Wednesday, May 15 - 11:00am-12:30pm or Tuesday, June 4 - 6:30-8:00pm
Alberta Children's Hospital Theatre

Understanding a Child’s Pain: What to Do, How to Help

This workshop is for parents and caregivers on how to help their child cope positively with painful medical procedures, tests and injuries of childhood. 90 minute session will include a presentation with discussion focusing on how a child’s pain is perceived, how to talk to your child about pain, and how to successfully coach them to help themselves to overcome fears and worries associated with medical interventions.

Click Here to Register