“You are the expert when it comes to your child”, is a common refrain heard in paediatric hospital rooms across the country. This statement is encouraging for families who want to be involved in care decisions and share with doctors the insights they have gained caring for their child on a daily basis. Little research has been conducted to examine how parents’ expertise is engaged with and utilized by health care providers.

We will explore how physicians use information provided by parents of children with medical complexity.

The first study focused on interviews with physicians to understand the complexity of the decision-making process in context and the second study will focus on understanding perspectives of family caregivers when making a difficult medical decision in consultation with a physician regarding their child with medical complexity. The findings from both studies will be summarized, contrasted and compared.

In the first study, interviews with physicians revealed that ambiguous information, conflicting rules, and beliefs on roles all contribute to difficulty of decision-making. A decision is achieved by allocating the decision to one party. Lack of tools, rules or beliefs that would assist sharing the decision between the physician and patient/family, contributes to the need to allocate the decision to one party.