After discharge from pediatric emergency, 20% of parents feel uncertain caring for their child: Study

A cross-Canada study of the emotional needs of parents who bring their children to pediatric emergency departments shows a significant number leave feeling dissatisfied and uncertain about how to care for their child after discharge.

In recently published research in PLOS ONE carried out at 10 Canadian children's hospitals, the study team reports that 30% of parent caregivers have unmet emotional needs, 15% have unmet communication needs and 15% feel inadequately involved in their child's care.

Though about 85% of parents say they feel good or very good about their interactions with the doctors and nurses, only 81.8% feel comfortable caring for their child at home afterward.

"The core theme is, 'I am scared, for my child and for me,'" says emergency pediatrician Samina Ali, professor of pediatrics and adjunct professor of emergency medicine in the Faculty of Medicine & Dentistry. "They're telling us, 'I need you to educate me about my child's condition. I need you to make sure that my child is included in this process and that I have enough information to care for them when I go home.'"

"While the results are very positive in some respects, they indicate there's work we still can do together to improve families' experiences," says Shannon Scott, professor and acting dean of the Faculty of Nursing and former Canada Research Chair for Knowledge Translation in Child Health.

"I think these results are going to be very persuasive for decision-makers in health care institutions to help them make resource allocations and to design additional services and support for families," says Scott.

Stress on families, stress on the system

The study was the brainchild of Ali, who asked Scott to participate because she is an expert in engaging families in research and creating health education materials for parents, and then brought in Pediatric Emergency Research Canada, a network of more than 200 pediatric emergency doctors and researchers at all pediatric hospitals across Canada.

More than 2,000 family caregivers—74% of them mothers—agreed to participate in the study between October 2018 and March 2020. They filled out one survey while in the emergency department and another within seven days of leaving the hospital. The mean age of the parents was 37.8 years and the mean age of the children was 5.9 years.

Parents were more likely to say their needs had been met if they felt their questions were answered, their child's privacy was respected and they received regular updates on their child's care. Parents with the sickest children were the most satisfied, whereas parents of less ill children were less likely to be satisfied—a circumstance Ali and Scott say is likely due to medical staff spending more time with the most acutely ill children.

Scott and Ali stress that better care is possible despite the pressures on staff with long wait times in overcrowded emergency departments.

"We can't control how many cases of RSV there are in the community, but what we say and what we do is in our control," says Ali. "If I am better trained to meet parents' emotional and communication needs, that improves the experience for each family. It could also decrease the stress on the system because they leave feeling cared for and safe and knowing what to do when they go home or for the next illness."

Ali notes that the research team previously identified that caregiver stress is associated with early returns to pediatric emergency departments. New results to be published this year seek to shed light on how parents' health literacy affects non-urgent use of emergency departments. Health literacy is a measure of how comfortable a person is understanding and acting on the health information they receive from medical staff.

"In one out of three families I meet, the caregiver will have less than adequate health literacy to understand the information I'm giving them," Ali says. "If we can manage on a public health level to increase our national health literacy, that will probably affect our department utilization as well, because we are finding that caregivers with low health literacy are one and a half times more likely to have non-urgent ED use."

Take time to give a simple update

Parental anxiety can negatively influence a child's developmental and mental health, Ali points out, and non-urgent visits to the emergency department may lead to a child being exposed to germs in the waiting room.

Both Scott and Ali believe small changes in emergency department staff behavior could have a big influence.

"Take 10 to 20 seconds between patients to tell families, 'I haven't forgotten you,'" Ali advises. "'I'm waiting on a test result—your child is not anemic, now I'm just waiting for their urine results to come back or whatever it may be. That 30-second update can make all the difference for how that family perceives their entire emergency department visit."

"With the pressure in emergency departments right now and not enough staff and the volume of cases, we start to make decisions about what we can and can't do," says Scott. "These findings tell us that those activities are highly valued. So they are worth our time and investment."

"We can never discount the importance of emotionally supporting families when they have acutely ill children."