Two parents shared their perspectives on partnering with professionals to support quality and safety in children's rehab and acute-care at a grand rounds at Holland Bloorview on Wednesday.
Here are a few key messages I took away from this fascinating talk.
Ann Hovey, with daughter Cailyn above who was diagnosed with a terminal brain-stem tumour six years ago (and sat in the audience to hear her mom speak!), spoke about how health-care professionals "are the gatekeepers for developing partnerships. They can work with us to develop our skill sets and dictate whether we become strong partners."
Through their actions, professionals create environments that support or impede parent collaboration and empowerment, she said. "The times when I felt most helpless were not necessarily the most dramatic medically. They were when I was least respected as an important contributor on Cailyn's health-care team, when I was least heard, and when my suggestions were least valued, leading me to feel least hopeful."
She shared a story about her inability to ask for an experienced specialist to perform a life-threatening procedure on her daughter when she didn't feel the neurosurgery resident on hand was up to the task. "In my professional life, I facilitated dysfunctional teams of people who didn't want to work together to exceed expectations, but I couldn't manage this incident with a resident. I felt too vulnerable and overwhelmed by the gravity of the information."
Ann talked about how parents arrive in the system "in ultimate vulnerability" and typically with a history of deferring responsibility for their own health-care decisions to doctors. Some of her strategies for building partnership with parents include: "Listen to parents; teach us how to help our children and support our reasonable choices; involve us in decision-making and give us the confidence that we have something to contribute; ask if we have questions and confirm our understanding on key issues; and stay seated, which means that you are here until we're comfortable with the information."
Heather Evans, the parent of two children who receive services at Holland Bloorview and co-chair of our family advisory, echoed Ann's point about how hard it is for an inexperienced parent to stand up and voice concerns with a medical professional. She described how she knew intuitively that her infant daughter Emma was not meeting her milestones, but her pediatrician dismissed her concerns with a curt: "Go home, everything's fine, and come back in three months."
Heather tried to initiate a discussion about her daughter's development by saying: "You do know she's a preemie, right?" but the doctor never followed up.
Her advice to clinicians who want true partnership with parents? "Listen to understand; have empathy; validate my concerns; and work together to develop a plan."
"All of this may seem like more than you bargained for when you joined your health-care profession," Heather said. "But having a child with a disability is generally more than any parent has bargained for as well."