Researchers are hoping to better understand what impact restricted family presence has had on pediatric intensive care unit (PICU) patients during the pandemic. It is hoped that results of the national study will help design family presence policies that can be adapted in the event of future threats.
“It is terrifying to have a critically ill child – to see them suffer, to worry about losing that child, and to be in a place that is so unfamiliar and where something is constantly beeping, often signalling that something is wrong,” says parent partner Martha Walls. “In our experience as parents, one of the most important ways of coping with the great stress of the PICU is to have family support.”
Family presence is essential to family-centred care in PICUs, where children have a high risk of death and disability. PICUs generally value and promote family presence. However, to curb the spread of COVID-19, policies were implemented that restricted family presence in PICUs.
“I can’t imagine the fear of families whose children need intensive care. They are under incredible stress that is usually improved only by being with their child, able to touch them and participating in their care,” says the IWK’s Dr. Jennifer Foster, lead investigator.
Foster and her research team aim to develop evidence-based guidelines for consistent implementation of family presence in PICUs across Canada, in any context.
“The pandemic was a time when restrictions to family presence had to be implemented quickly to try to minimize the risk of the healthcare system collapsing” says co-lead investigator Laurie Lee, Alberta Children’s Hospital. “But now we have the opportunity to use these restrictions as a case study in what happens when family presence – usually highly promoted and supported in a PICU context – is significantly restricted.”
“As a youth, knowing that your values and ideas could potentially influence future policies can be very empowering and so I think hearing about this project is heart-warming for many current and previous patients,” says Neda Moghadam, Family Leadership Council co-chair at IWK Health. “Given that we are experiencing a global pandemic, most patients may feel guilty sharing any negative response to the family restriction policy, but the mere existence of this study demonstrates that their stories are important to help us move forward.”
“Patient and family-centered care advocates recognize the need for children and their families to be together during a PICU admission,” says co-lead investigator Dr. Jamie Seabrook, of Brescia University College. “Our goal is to create consensus statements, informed by stakeholder experiences and priorities, which will enable PICUs to optimize family-centered care in any context.”
“Not many children or youth expect to enter the OR -especially the PICU- so early in their lives,” says Moghadam. “Yet, when it does actually happen to you, having your closest loved ones gives you the reassurance that at least one element of your life is constant: support from friends and family. As an only child, having my mother and father beside me as we waited in those last few minutes for my surgeon gave me the strength to tackle seemingly-inescapable fears: the fear of needles, the anxiety of having eight large, blue figures around you, and most of all: the uncertainty of the future.”
The funding from the Canadian Institutes of Health Research (CIHR) will enable the team to interview children and youth admitted to the PICU about their experiences and engage with stakeholders to develop guidance through consensus statements. Lead researchers for the project are at IWK Health and Dalhousie University in Halifax NS, Alberta Children’s Hospital and University of Calgary in Calgary AB, and Brescia University College in London, ON. In the future, the team will be able to honour their commitment to family centered care by enabling meaningful family presence in a safe and responsible manner.