Daniel and Ashley’s journey with Alberta Children’s Hospital (ACH) began six years ago with the birth of their twin boys, Isaac and Emmett. Emmett was diagnosed with a congenital heart defect, which led to significant medical challenges including a stroke and subsequent diagnosis of cerebral palsy. As a result, their family became deeply immersed in the healthcare system including frequent ACH outpatient visits. Over time, they have grown into confident advocates for Emmett—something neither imagined for their introverted selves.

Motivated by a desire to give back, Daniel and Ashley became involved with ACH’s patient and family advisory councils. Daniel joined the Family Advisory Council (FAC) three years ago and Ashley joined the Safety FAC a year ago. Both have found meaning in sharing their lived experience to help improve care for other families. Daniel noted that you don't often feel like you have time or energy to really get involved, so becoming an advisor has allowed him to make a difference and have his voice heard. “Everyone has different views and experiences; your story is your own,” he said. “As advisors, we’ve learned it’s okay to disagree and get involved.” Ashley and Daniel have also appreciated the opportunity to connect with other medical families throughout their journey.

Several consults stand out in their minds as especially meaningful. Daniel recalled contributing to conversations around hand sanitizing protocols, hospital wayfinding, and programming for the Science Centre and Emily’s Backyard. Ashley highlighted her participation in the hospital ID wristband consult and a recent conversation around safety and health equity, which offered new insight into the experiences of others.

For those thinking about getting involved, Daniel encourages to "just do it"—noting how it has opened their eyes to the inner workings of the system they've depended on during some of their most difficult moments. Ashley adds that it gives you a whole new perspective on the supports offered at ACH and the potential for change. Looking ahead, both hope to see continued innovation and fresh thinking at ACH, stating that “we can’t get comfortable with what has always been done”. They envision more opportunities for families and patients to participate in shaping care that truly meets their needs.

At Alberta Children's Hospital, we believe that open communication and meaningful engagement are essential to delivering the best possible care experience to our patients and families. One way we foster these connections is through Leader Rounding, an initiative designed to bring hospital leaders directly into conversations with patients, families, and staff.

We have recently expanded our reach to the NICU and Ambulatory Care. We invite you to review our Quarterly Leader Rounding Report, which highlights key metrics, insights, and actions taken as a result of these conversations. Thank you to all the patients, families, and staff who have taken the time to participate in Leader Rounding. Your voices drive meaningful change, and we look forward to continuing these important conversations together.

Stay tuned for our "Day In The Life" series as we continue to spotlight the incredible teams making the Alberta Children’s Hospital a place of healing, hope, and heart.

Thanks to those who joined us for the PFCC Grand Rounds on the transformative power of peer patient connections. This session was informative in discovering how sharing lived experiences fosters hope, reassurance, and a sense of community.

Watch the recording here!

Speakers:

Kasey Aiello, Patient Liaison, Foothills Medical Centre Neurosciences

Lori Beaver, Peer Support Volunteer, Foothills Medical Centre Neurosciences

Sandi Oelhaupl, Family to Family Connections Coordinator, Alberta Children's Hospital

Pam Kai, Family Mentor, Alberta Children's Hospital

Jeffrey Danielson, Manager, Adult Addiction Services, Calgary

Chris Anhorn, Peer Support Worker, Recovery Alberta