Are the Nurses All Right?
Researchers at the KU School of Nursing have launched a study to assess how the coronavirus pandemic is affecting the well-being of nurses.
If the World Health Organization hadn’t already pre-designated 2020 as the Year of the Nurse and Midwife, the coronavirus pandemic most certainly would have earned the nursing profession that title by the end of the year. Of the many health care professionals who have strained and sacrificed to keep the rest of us healthy and alive, none have been more present on the frontlines of the crisis than nurses, and no other professionals have spent more time within those six-foot infection zones taking care of patients with COVID-19.
While the public and politicians argued about mask mandates and lockdowns, nurses just did their jobs. Early in the pandemic, in the absence of knowledge about the virus and sufficient personal protective equipment (PPE), they made sure patients were oxygenated, that their basic physiological needs were met, that they received life-saving medications, and that they were pain-free and their fevers were managed. When facilities in hard-hit areas ran out of space, they tended to patients in hallways and tented parking lots. As family and friends of dying COVID-19 patients remained outside their rooms because of restrictions put into place to control the spread of the virus, nurses held up smartphones and tablet screens so that isolated, dying patients could say goodbye to the people they loved.
Nurses have done all of that through skipped meals and extra shifts, especially as their colleagues got sick or went into quarantine, and then went home to sleep in the basement so as not, they prayed, to infect their families. “Nurses Are the Coronavirus Heroes,” declared a March 2020 headline in the Wall Street Journal, and it’s easy to understand why such labels have become ubiquitous.
But words like hero can also obscure the humanity of the people they honor. Nurses are humans, not superheroes, and the pandemic affects their well-being, too — even if they never contract the virus. And then there’s the flip side: in addition to being heralded as saviors in the pandemic, nurses and other providers have also been subject to the scrutiny that goes with combatting a crisis.
Amy Garcia, DNP, RN, CENP, clinical associate professor and director of the Office of Practice at the University of Kansas School of Nursing, said that the scrutiny was especially intense at the beginning of the pandemic, when organizations such as the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) were concentrating on understanding the virus and how health care providers could best manage COVID-19 patients.
“Much of the guidance coming out then [for nurses] was framed as ways that nurses could do a better job, without recognizing that nurses were working short-staffed and without PPE,” said Garcia, who is also former chief nursing officer for the American Nurses Association (ANA). “There wasn’t very much about what impact this has on the nurse as a person. And I think that is absolutely critical.”
So critical that, in the spring of 2020, Garcia joined forces with Frances M. Yang, Ph.D., research associate professor at the KU School of Nursing, to launch a longitudinal study on the effect of COVID-19 on nurse well-being and quality of life. Their COVID-19 Impact on Nurses Study (COINS) uses an online survey to measure how the pandemic impacts nurses’ emotional, mental and physical health over time, and how those effects vary among nurses in different health care settings.
Assessing nurse wellness is important not only because the strain of dealing with a pandemic can lead to such problems as depression, anxiety and substance abuse for nurses personally, but also because research shows that nurses who are well provide better care. Overburdened and exhausted nurses make more medical errors and have less empathy and compassion for patients. In the worst cases, when nurses are burned out entirely, they sometimes decide to end their career. In a country that already has shortages of nurses, that’s a problem. In the context of a global health emergency, an exodus of nurses would be a catastrophe.
“If we see increased intent to leave related to the stresses of COVID, we have a public health crisis on our hands,” said Garcia. “Because if the nurses aren’t there, who is going to take care of people?”
Data R Us
COINS builds on the KU School of Nursing’s rich history of collecting and analyzing data in order to help nurses and improve patient care. In 1998, the KU School of Nursing and the Midwest Research Institute created the National Database of Nursing Quality Indicators (NDNQI), the only database that evaluates the quality of nursing care across the United States at the unit level. In 2001, the school also launched a national Registered Nurse (RN) survey to assess nurses’ satisfaction with their work environments.
To create the COINS survey, the researchers conducted literature reviews, focus groups and interviews with nurses in long-term care facilities, schools, hospitals and clinics. They chose some questions from the COVID-19 Community Survey Question Bank, produced by the CDC, which addresses how COVID-19 affects personal and professional lives. To measure well-being, quality of life and psychological issues, they selected questions from the NIH’s Patient-Reported Outcomes Measurement Information System (PROMIS), which assesses the physical, mental, emotional and social health of patients.
Yang, who specializes in measuring quality of life for patients and making sure that survey questions are culturally fair and mean the same thing for all group participants regardless of age, gender, education level, race and ethnicity, had helped develop and validate PROMIS measures at Harvard Medical School, where she also completed her postdoctoral work in epidemiology with a specialization in psychometrics. As a member of the EPIC PROMIS Collaborative, she’s proposing to integrate the PROMIS survey questions into the EPIC electronic health record system for patients at The University of Kansas Health System.
What is different about the COINS survey is using those measures for providers — in this case, nurses — rather than patients.
“One of the reasons the questions are appropriate for nurses, too, is that these are computerized-adaptive tests that work for patients and for healthy people. The questions you get come up according to how you responded to previous questions. It’s not a static group of measures,” said Yang. “It’s more efficient and effective at calculating both levels of symptoms and health conditions. Nurses are very busy, so answering fewer questions that measure their well-being will save them precious time, while they take a little bit of time for themselves to reflect on how they are doing. Nurses are always putting others first, which is why the COINS survey was designed to allow nurses to have 20 minutes to themselves as they answer the questions and decide what resources they might need.”
Moreover, the COINS survey will include built-in resources. For example, after completing the questions about depression, the survey provides a link to a suicide prevention website and hotline. There is also a chat button that allows survey participants to communicate anonymously about their problems and get support.
Even though the COVID-19 vaccines are expected to curb the number of very sick people, the pandemic could still have a long-term impact. Questions remain about new variants of the disease, how long the vaccines last and how much they protect people from passing the virus to each other. That’s why COINS is a longitudinal study. Garcia said they plan to survey nurses up to four times a year to see how their well-being adapts and changes as the months pass.
“We know that nurses everywhere have really poured their hearts and souls into taking care of patients and their communities and families,” said Garcia. “What we don’t know is how well that resilience will hold across time.”
So far, the COINS survey has been administered twice to two populations: nurses at the KU Health System in Kansas City and nurses who work in long-term care facilities across the country.
“This has been unreal”
In May 2020, Garcia reached out to the American Association of Post-Acute Care Nurses (AAPACN), which represents more than 17,000 nurses who work in long-term care, and asked them to participate in COINS. They agreed.
“I knew our long-term care nurses were struggling and suffering,” said Amy Stewart, MSN, RN, vice president of education and certification strategy at the AAPACN. “This has been unreal.”
Nursing homes, which take care of people most vulnerable to the coronavirus — elderly people, many of whom also have health conditions — have been especially hard hit by the pandemic. These facilities have long struggled with infection control and having enough staff. On top of that, even though the first coronavirus cases in the United States were among nursing home residents, long-term care facilities were not prioritized to receive PPE until two months after a series of outbreaks, according to a report issued by the U.S. Senate Committee on Aging.
“We had nurses working double shifts, up to 18 hours a day,” said Stewart. “Here are some things I’ve heard them say: ‘I lost three residents within hours — one minute they were talking to me; the next, they were just gone.’ ‘I’m working day and night without breaks, without food, without taking a shower.’ ‘We were using homemade PPE, it didn’t feel safe.’ ‘I’ve kept the virus out for months, and today 24 people tested positive. I feel so defeated.’”
In June 2020, when the COINS survey was set, Stewart sent out a link to it via a listserv and shared it on social media. Long-term care nurses in 43 states completed the survey.
As expected, the early results revealed some problem areas. Many long-term care nurses who took the survey in June reported that they felt guilty about the possibility of bringing the virus home to infect their families.
Moderate fatigue and some degree of emotional problems such as depression were reported by many of the nurses. Long-term care nurses also indicated that they were demoralized by the negative press that nursing homes in particular have received because of their high coronavirus death rates, something they had also mentioned in the focus groups conducted to design the survey, Yang said.
Betsy Hardy, a long-term care nursing director in Colorado who worked maskless for days when it was difficult to get PPE and didn’t take a day off for two straight months, said the media criticism has been one of the hardest things about the past year.
“I took a lot of it very personally, because I care deeply about my staff and my residents,” she said.
And they were overwhelmed by the increased infection reporting to local, state and federal agencies they were required to do, and wanted an efficient way to combine those reports.
But despite those issues, in the first round of surveying conducted in June, long-term care nurses indicated that overall, they were doing okay. And most said that they did not plan to leave their current jobs.
“That both surprised and delighted me,” said Stewart. “It tells me that they are dedicated not just to nursing but to long-term care, to this specific profession.”
“They focus on the patient”
When the COINS researchers reached out to their partners at the KU Health System in May and asked them to help them design the COINS survey to share with their nurses, the response was an immediate yes.
“We wanted to find out how the pandemic was impacting nurses in our region,” said Jennifer Williams, Ph.D., RN, director of nursing research, education and development at the KU Health System. “We recognized that we needed to do a little bit more investigation into how COVID was impacting daily life, quality of life, people’s mood and their resilience.”
Roughly 20% of nurses at the health system took the survey when it was offered in July 2020. One good thing the results revealed was that these nurses felt supported by their nurse leaders at the health system and that they were being well-educated about COVID-19. They were also positive about their ability to find all needed PPE, as well as having safe places to remove it. But the results also revealed sources of stress.
“For the hospital nurses, the patterns of fatigue were interesting,” noted Garcia. “The oldest nurses and the youngest nurses were okay; it was those in their late 20s, early 30s who were really struggling. We think that might be because they are caring for kids and those kinds of things. We saw quite a bit about the need for support around childcare.”
The survey also revealed an irony: nurses at the health system who were not working directly with COVID-19 patients were more anxious than the ones who were.
And despite feeling supported by their employer, some nurses at the health system indicated that they did not feel certain they could stay home if they needed to in order to quarantine. They cited such reasons as not having enough sick leave or there not being anyone else to take care of their patients.
“That surprised me a little bit because we’ve told people that if you’re sick, stay home; we have coverage and support,” said Williams. “But then we realized that maybe people were feeling like they didn’t want to leave their team short.”
Nonetheless, the health system nurses also appeared to be coping well at the time of the first survey. Most participants rated their overall quality of life as well as their mental health as “very good” or “good.” And few of them indicated any intent to leave their jobs.
“The initial round of results was validating,” said Rachel Pepper, DNP, RN, chief nursing officer at the KU Health System. “Our nurses are resilient, they are dedicated, and they really, really just focus on the patient.” Continued Resilience
When the COINS survey was administered again in the fall of 2020, the number of cases had surged, and the pandemic had become part of life in the United States. But some progress had been made also: rapid testing was available, vaccines were on the horizon and medical professionals had grown more adept at managing infected patients.
The fall survey, which went to long-term care nurses in all 50 states, showed that the guilt these nurses feel about possibly bringing the virus home to their families has increased slightly since the spring, but not by statistically significant amounts. They were, however, somewhat less fatigued. At the KU Health System, more nurses reported an increase in the number of hours they worked, and fewer had childcare concerns than in the spring survey. There was also an increase in the number of nurses at the health system who reported moderate and severe levels of fatigue.
But in general, nurses in long-term care and at the health system seem to be holding steady. Preliminary results showed there was a slight decline in some measures of well-being and that not many nurses were considering leaving their jobs.
“Nurses have been figuring out ways to adapt,” said Garcia. “So far, a year into this pandemic, nurses are showing tremendous resilience.”
Wherever they practice
Some results from the COINS are already being used. The health system adjusted their internal communications to make sure nurses knew that it was okay to take time off, and additional nurse leaders have started making visits to nurses on patient areas to solicit feedback directly. The researchers are also working with the KU School of Architecture to design spaces that would create a safer environment for infection control as well as a more supportive one with a sense of community and places to take breaks.
Future COINS surveys will include the nurses on the other KU Health System campuses in Hays, Great Bend and Pawnee Valley, as well as VA hospitals, schools and safety net clinics in the Kansas City area. The COINS team has also surveyed nurses in Finland, Brazil and India; the two latter countries and the United States have the most cases of COVID-19.
“Understanding the impact on nurses around the world will really give us very valuable information for how to improve the well-being of nurses, wherever they practice,” said Garcia.