Restricted family presence in the PICU during the COVID-19 pandemic: Understanding impact, experience, and stakeholder priorities

Family presence is essential to family centred care in pediatric intensive care units (PICUs), where children have a high risk of death and disability. PICUs generally value and promote family presence. But to minimize COVID-19 spread, hospitals and PICUs implemented policies to restrict family presence. Our research team, consisting of healthcare providers (HCPs), families, patients, and policy-makers has been studying the policies and their impacts. We have found a lot of variability in the policies and evidence of harm to all stakeholders. We have not yet studied the impact on children. Before the next major threat to family presence and family centered care, we need input from patients, families, and HCPs on what is most important to them in family presence policies, what the impact of restrictions are, and what important outcomes of a family presence policy are. In this study we will build on our existing work and use the situation of restricted family presence to frame a better understanding of family presence policies in general. We will interview pediatric PICU patients to better understand the impact and experience of these policies, and also which parts of a family presence policy are important to them. Next, we will hold focus groups with patients, families, HCPs, and administrators where we will work together to develop priorities for family presence policies, identify ways to improve or avoid the impact of restricted presence policies, and determine how to best assess these policies. Finally, we will hold a national stakeholder conference to create consensus statements on family presence in PICU. All of our studies have been designed with Patient Partners and people in healthcare who will use the information, and we will exchange information with people affected by family presence policies throughout the studies. We will use national platforms to disseminate consensus statements and we will look for feedback from patients, families, and HCPs.