06/03/2026
Ottawa, Ontario — Friday March 6, 2026
When a baby is critically ill in the NICU, every decision feels high‑stakes. Especially in “grey zones” where more than one care path may be medically reasonable, parents and clinicians must navigate uncertainty together. An international study led in part by CHEO researcher Gregory Moore explores the perspective of families to better foster genuine shared decision‑making in these moments.
“When a baby is in the NICU, no family should feel they’re carrying the weight alone. In addition to compassionately providing truthful and balanced medical information or recommendations, the medical team needs to make space for questions and listen to what matters to parents.” said Dr. Moore. “If families feel more involved in care decisions, they may experience less moral distress”
Surveying 71 parents across four NICUs in Canada and Australia, the study found that many families experienced decision‑making as overwhelming due to uncertainty, exhaustion, and pressure to act quickly, leading to feelings of moral distress. While 99% wanted to be closely involved in their child’s care decisions, only 63% felt consistently included.
The study shows where shared decision‑making can falter when communication gaps and time pressures leave families feeling distressed. Strengthening how teams explain uncertainty, invite questions, and incorporate families’ values can make collaboration more authentic and help parents feel supported.
The researchers hope these findings can help guide clearer frameworks and tools that reduce moral distress for both families and clinicians, helping teams make the most challenging decisions together.