Putting Patient’s Voices First in Cardiac Care

31 October, 2023 | St. Boniface Hospital

For those experiencing Congenital Heart Disease (CHD), life can have unique challenges and barriers. Emily Hyde, a Clinical Nurse Specialist and PhD Candidate who works at St. Boniface Hospital, was looking for ways to improve the continuity of care for those transitioning from pediatric CHD care at Health Sciences Centre to adult care at her place of work. These transitions are a new and evolving field due to advancements in healthcare.

“CHD is a very broad title referring to any structural abnormalities that are present from birth,” she explains. “The first cardiac surgery performed in 1953 to successfully close a hole between the right and the left side of the heart changed everything. It meant that more children were surviving into adulthood. Since the 1980s, we’ve seen an improvement in medical techniques and management. This means that since 2010, there are more adults than children living with CHD. And there wasn’t a lot of research about how to ensure that the transition between pediatrics and adult services was best for patients.”

Hyde applied for and received a $7,500 Inspiration Grant from Réseau Compassion Network to help create best practices and guidelines that will ensure care for the whole person and not just their heart. “The programs that existed for this transition weren’t co-designed,” explains Hyde. “There were no voices or experiences of those who had lived through the transition to inform us. I personally don’t know what it’s like to transition… But I know how to provide health care during the transition. We wanted both sides of the experience included in the design of the program.”

Emily Hyde

Hyde and her colleagues kept an open mind and invited small groups of care providers and patients to workshops where they could share their perspectives. “What we heard was that these are regular people first and foremost, and CHD is just one part of their lives,” she shares. “Not everything revolves around this disease for them. They want to go to school, have jobs and relationships and do everything that everyone else does. We need to be mindful of that. The holistic approach is so important.”

The questions brought to the patients were simple but powerful: what worked well for you during transition? What were you worried about? What didn’t work so well? What was missing? The answers were sometimes surprising. “While I was in the workshop listening to patients, I’d realize, ‘Oh, I never thought of it that way…’ ” continues Hyde. “We heard patients tell us, for example, that they get told ‘no’ so often in their lives due to their health that eventually, everything feels like a barrier. They need supports beyond medical services, they need social workers and mental health workers to help them create the life that they want for themselves.”

The initial reports from these workshops were recently accepted and published in CJC Pediatric & Congenital Heart Disease, a well-respected medical journal. The edition also featured an editorial by a well-known pediatric CHD specialist out of Belgium who highlighted that all practitioners need to move from education to empowerment. “We had an incredible group of people who came together to make this happen,” clarifies Hyde. “Researchers, health care providers and people with lived experience contributed to this project. Everyone was on board from the beginning and others are taking notice of what we’ve accomplished.”

Up next, the team will use the data and feedback from these workshops as a baseline to be able to make a larger grant application that will allow them to identify what a transition program might entail. “Without the Inspiration Grant, that application would have been much harder to make; we simply wouldn’t have had the data to back up what we are trying to do,” confirms Hyde. “Everyone involved is proud to have been a part of this. We can be leaders across Canada in this field, and that’s what we’re aiming for.”