Table 1 Important study team members and the roles and expertise they contribute to the study

Patient and family engagement coordinator

Critical in building connections with patients and families including connecting with patient partners

Provides insight in patient and family centered research design

Centre for innovation and excellence in child and family-centred care (CIECFCC) lead

In our institution, this office oversees Interpreter services. It is critical to partner with Interpreter services on studies where they are highly involved

This office also oversees patient relations. We recommend their involvement especially in studies that focus on lived experience. They can provide significant expertise in supporting families in these discussions. A pre-existing relationship with this office prior to undertaking the interviews can be helpful if/when families raise significant concerns regarding their experience

Multidisciplinary members of study team

Our study team includes physicians, social work, nursing leadership. The lived experience of a patient/family includes interactions with the multi-D team and thus a multi-D research team enriches the overall study methodology, analysis and ability to operationalize study findings

Strategic patient partner

A patient partner does more than provide a “patient perspective”. In the case of our study, they are a study team member. They provide unique insights that are critical to developing a study that is family-centered