When children are admitted to a pediatric intensive care unit, they aren’t the only ones who can find the experience sad, scary and lonely. So can their parents.
A new study led by Brad Phillips—a researcher with the West Virginia University School of Nursing—suggests that being young, being single, having a low income and having limited post-secondary education may make parents more likely to feel lonely or perceive a lack of emotional support when their children are in the PICU.
The findings appear in the International Journal of Nursing Sciences.
“I worked as a PICU nurse for 10 years,” said Phillips, a doctoral student and clinical education assistant professor in the Department of Family/Community Health. “We ask parents, ‘Do you need anything?’ And that’s interpreted as, ‘Do you need a water or a coffee?’ If you don’t sit down and have a conversation with them, it’s hard to get to the root of what they really need.”
Between January 2019 and January 2020, Phillips and his colleagues interviewed 80 parents of children admitted to a PICU. The researchers used questionnaires to measure the participants’ depression, anxiety, anger, fear, loneliness and perceived emotional support. They also gathered demographic characteristics about the parents—such as their age, marital status and education level—and information about the children’s medical conditions.
Parents who had never been married—or who were separated, divorced or widowed—reported more loneliness and poorer emotional support than those who were married or partnered. Similarly, parents who were 25 years old or younger reported higher loneliness and lower emotional support when compared to older participants.
In addition, parents were more lonely and reported worse emotional support if they hadn’t completed college or if their household income was less than $40,000 a year.
“Sometimes things happen that are really bad, unexpected traumas, and I think especially if you’re a low-resource parent—like a single, young parent with not much money—you’re going to be at a high risk for having a lot of negative emotions around this event that has turned your life upside down,” said Laurie Theeke, a mentor for the study. Theeke is a professor and director of the Ph.D. Program at the School of Nursing. Though currently a nurse practitioner in the Department of Family Medicine, she previously worked for several years in the PICU.
The researchers found that fear correlated with depression and anxiety. They also discovered that the lower emotional support for parents was linked to more loneliness, anger and symptoms of depression.
“I think what was most interesting is that all of these emotions were connected in some way, like a web,” Phillips said. “Maybe some fear leads to anxiety, and some loneliness leads to depression. It’s this really complex, interrelated system of emotions that these parents are experiencing.”
Nurses are particularly suited to meet the intricate emotional needs of pediatric patients’ parents. In a 2020 Gallup poll, Americans ranked nurses the No. 1 most ethical and honest profession for the 19th year in a row.
Nurses frequently answer parents’ questions, which can range from logistic to poignant: Where’s the restroom? Is there a vending machine around here? Is this symptom normal? Will this test hurt my child? Is she going to be OK?
“Historically, medical teams have worked to treat individual symptoms,” Theeke said. “For example, we would give an inhaler for wheezing or an antidepressant for depression. But currently, healthcare workers are working to identify symptom clusters that occur with situations or illnesses, hoping to enhance understanding and develop interventions that target the symptom cluster.”
With WVU’s new children’s hospital being constructed, there is an opportunity to ensure that newly identified needs of parents will be met.
Phillips and Theeke have many ideas about what a targeted intervention might look like.
“First and foremost, we need to recognize that the current COVID-19 pandemic has impacted the parent experience at hospitals, and the negative emotions identified in this study may actually be heightened for parents at the moment,” Theeke said.
Phillips notes that based on the study’s findings, it may be necessary to screen parents to identify who is at risk for this cluster of negative emotions when their children are admitted to the PICU.
“We could create a questionnaire for nurses to administer to the parent, and then subsequently flag these at-risk parents in the electronic medical record system,” he said.
Nurses could then incorporate these needs into care planning to enhance emotional support and link at-risk parents to additional services so that they get the emotional support they need.
“It is important to truly assess who has the most needs,” Phillips said. “We know from other research studies that some of these parents are having post-traumatic stress at home when children are admitted to the PICU. One study even showed that it was comparable to that of domestic-violence or 9/11 victims.”
Both Phillips and Theeke advocate for structural supports in hospitals and additional services. Phillips suggests that units “provide parents with a place to get away.”
“That could be a parent lounge with televisions and lockers—a place they can go, take a shower and rest where they don't have to sleep at the bedside,” Phillips said.
Although the COVID-19 pandemic complicates communal meals now, slow cookers of soup and baskets of rolls could one day cover kitchen counters in PICU wards. Parents could access the kitchen, have a free, hot meal and relax with their significant other.
“They could also have a place where siblings can just go and play so that they know they’re being taken care of,” Phillips said.
Support groups for parents whose children are in—or who have been discharged from—the PICU could be another way make them feel supported. The meetings could take place in person or online.
Theeke, a nationally known expert on loneliness, emphasizes the importance of being present and listening in the moment. Support groups can offer this experience.
“Part of feeling supported is mutuality,” she said. “Knowing that you’re talking to someone who truly does understand helps you to establish that sense of mutuality, which can lead to longer-term relationships even after a support intervention is over. And, you know, I think there are parents who might want to lead or participate in a group because there’s meaning in telling others what has happened to you. When you’ve had a traumatic experience, telling your story is therapeutic.”
Note: Brad Phillips will conduct a follow-up study with parent caregivers in the home to further understand what it is like to live through this experience. Parents caring for a child with an acquired disability living in West Virginia are welcome to reach out to see if they meet eligibility criteria. Parents interested in participating in the study can contact Phillips at firstname.lastname@example.org.
Title: Relationship between negative emotions and perceived support among parents of hospitalized, critically ill children
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