Families of patients with COVID-19 suffer with anxiety, depression, PTSD
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Key takeaways:
- COVID-19 limited physical contact between patients and family.
- Relatives of those in the ICU with COVID-19 demonstrated symptoms of anxiety, depression and PTSD.
- Death of their relative heightened these symptoms.
The impact of COVID-19 extends beyond those who get infected and evokes symptoms of anxiety, depression and PTSD in their families, according to two studies published in Annals of the American Thoracic Society.
“The experience of families during the COVID-19 pandemic was unique for many reasons,” Jared A. Greenberg, MD, MSc, associate professor in the division of pulmonary, critical care and sleep medicine at Rush University Medical Center, told Healio. “Many families were prohibited from visiting the hospital, many patients who were previously well were suddenly very sick in an ICU and families and clinical staff were dealing with a novel disease process.”
Anxiety, depression, stress
In a longitudinal cohort study, Greenberg and colleagues analyzed 90 families of patients who had COVID-19 between September 2020 and April 2021 to determine the prevalence of anxiety, depression and stress while their relative was in the ICU compared with after their time in the ICU.
Researchers assessed these factors with the Hospital Anxiety and Depression Scale (HADS) and the Impact of Events Scale-Revised (IES-R), which family members completed no more than three times while their relative was in the ICU and once after discharge.
Forty-three families lost their relative who had COVID-19, whereas 47 families had a COVID-19 survivor.
Following their relative’s ICU stay, families of deceased patients had worse average HADS-anxiety (9.2; 95% CI, 7.8-10.6 vs. 6.3; 95% CI, 4.9-7.6; P < .01) and HADS-depression scores (7.1; 95% CI, 5.7-8.6 vs. 3.2; 95% CI, 2.3-4.1; P < .001) than families of survivors.
Greater symptom burden of traumatic stress was also observed in families of deceased vs. surviving patients following the ICU stay through the IES-R score (36.1; 95% CI, 31-41.2 vs. 20.4; 95% CI, 16.1-24.8; P < .001).
Additionally, more families who lost their relative to COVID-19 vs. those who did not lose their relative had clinically significant symptoms of anxiety (score 11, 46% vs. 21%; P = .01), depression (score 11, 23% vs. 2%; P < .01) and PTSD (score 33, 51% vs. 26%; P = .01).
Researchers of this study also conducted individual interviews with families. This qualitative data further suggested that those who suffered a loss had more psychological symptoms.
Among families of a deceased patient, stress was often due to isolation and family role changes, whereas stress for families of a patient who survived was centered around their relative’s recovery.
While relatives of a COVID-19 survivor reported a positive outlook on the future, those who lost a relative due to COVID-19 could not seem to shake memories from the ICU, according to researchers.
Greenberg told Healio an unexpected finding was that both sets of families differed in who they went to when they needed support.
“It was surprising to find that the participants had different impressions as to whether their community helped or did not help them cope with stress depending on whether the patient survived or not,” Greenberg said. “For instance, despite the fact that many patients who survived an ICU stay faced a number of physical and emotional challenges, families were able to adjust in part due to support from their community. In contrast, a patient death from COVID-19 seemed to bring out feelings of resentment among other family members, which made it more difficult to move forward.”
Another surprising finding was that only 26% of families who lost their relative used mental health services, according to Greenberg.
“Our study highlights a need for mental health resources for families of ICU patients, particularly when the patient passed away,” he said.
Even though these findings pertain to when COVID-19 rates were high, Greenberg told Healio that families of ICU patients without COVID-19 experience similar challenges.
“Many of the challenges that existed for families during the COVID-19 pandemic continue to exist,” he said. “Families are often responsible for making life or death decisions for patients who are incapacitated in the ICU. Clinicians should understand how difficult it is to be a family member of an ICU patient to better support them through the process. The care we provide in the ICU can also prepare families for what life will be like after the ICU stay whether the patient survives or not.”
PTSD symptoms 1 year later
In a different cohort study, Timothy Amass, MD, ScM, assistant professor of pulmonary sciences and critical care medicine at University of Colorado School of Medicine, and colleagues assessed 115 (mean age, 53.9 years; 68.7% women; 29.4% Hispanic) family members of patients with COVID-19 in the ICU across five states to understand how PTSD symptoms vary at different times points within 1 year of their relative entering the ICU.
Using IES-6 scores reported by family members over the phone at 3 to 4 months, 6 months and 12 months, researchers assessed PTSD prevalence (score 10 indicating significant symptoms).
When comparing IES-6 scores as time progressed, researchers observed a reduction in both the mean score (3 months, 11.9 vs. 6 months, 10.1 vs. 12 months, 7.6) and the percentage of relatives with significant symptoms (63.6% vs. 48.4% vs. 32.9%); however, Amass told Healio this was still an elevated rate.
“The most remarkable finding was the rates of high IES-6 scores at 12 months,” Amass said. “In previous studies, prior to the pandemic, it had been reported that at 3 months, IES scores consistent with symptoms of PTSD were about 30% to 35%. While not directly comparable, it was notable that in our study, rates of symptoms of PTSD at 12 months were still 32.9%, suggesting a persistent impact of the hospitalization of the loved one on the family member.”
Researchers further found four demographics/clinical characteristics linked to heightened adjusted IES-6 scores at 1 year: female sex (+2.2 points; 95% CI, 1-3.4 vs. males), extended ICU stays (+0.58 points for each additional 10 days; 95% CI, 0.2-1), patient in-hospital mortality (+2.3 points; 95% CI, 0.9-3.8) and use of medication for a psychiatric condition (+2.3 points; 95% CI, 0.9-3.8).
Notably, having an education level higher than a high school degree lowered adjusted IES-6 scores at 1 year, with individuals who reported “some or complete graduate school” showing the most improvement in PTSD symptoms (3.9 points lower; 95% CI, 2.1-5.6 vs. a high school degree).
To see if differences in PTSD occurred based on race/ethnicity, researchers split the cohort into Hispanic and non-Hispanic and found a 2.57 adjusted IES-6 point (95% CI, 1.1-4.1) increase among Hispanic individuals at 3 months. This pattern did not continue as time went on, as adjusted IES-6 scores of Hispanic individuals went down by 2.1 points (95% CI, 0.4-3.9) at 12 months compared with non-Hispanic individuals.
“This reduction in symptom scores over time in those that identified as Hispanic was not expected and was likely multifactorial,” Amass told Healio. “Our data set did not allow a full exploration of this and would be a good area for future study.”
Among the 115 family members, researchers observed three different groups based on their PTSD symptoms reported at each follow-up period: those with persistent significant symptoms at 3 to 4 months and 12 months (n = 40), those with temporary symptoms who showed an improvement at 6 months and 12 months (n = 38) and those who never had symptoms (n = 37).
Within the cohort of individuals with persistent PTSD symptoms, researchers found more woman than men, more individuals with lower vs. higher education levels and more relatives of patients with longer vs. shorter ICU stays.
“In the cluster of participants who developed symptoms of PTSD and had those symptoms persist for 12 months, the length of stay of the patient was independently associated with these symptoms and was notably longer than in the other two clusters (persistent, 22.2 days vs. temporary, 15.6 days vs. no symptoms, 11.4 days; P = .023),” Amass told Healio.
Amass hopes that these findings reach all providers so that proper care is delivered to family members of patients who suffered with COVID-19.
“Primary care clinicians may consider evaluating these individuals for clinically significant PTSD, particularly if the patient had a prolonged ICU stay,” he told Healio. “Hospital clinicians should also be aware of the possible emotional response of these family members when in the hospital for their own care or the care of a loved one. Additionally, hospital providers should be aware of the possible complications of stress disorders, particularly symptoms of PTSD, that limiting bedside family engagement may incur.”
Future studies should consider looking into how providers can combat symptoms of PTSD in those close to ICU patients.
“We feel that the ‘problem’ of stress disorders has been well defined at this point in both the pre-COVID and COVID eras,” Amass told Healio. “We hope to see interventional trials that build on the knowledge gained from this trial and others, and engages families in family-centric, ethno-centric and culturally centric means to possibly reduce these symptoms in the family members.”
Keeping patients, family safely connected
These studies by Greenberg, Amass and their colleagues add to growing literature on the impacts of COVID-19 and emphasize how important physical presence is among ICU patients and their family, according to an accompanying editorial by Alison E. Turnbull, DVM, MPH, PhD, associate professor of medicine at The Johns Hopkins University School of Medicine, and Joanna L. Hart, MD, MSHP, assistant professor of pulmonary, allergy and critical care medicine and of medicine in medical ethics and health policy at Penn Medicine.
Despite these findings that show the possible harmful mental impacts of not being able to visit patients in the ICU, it is always important to remember safety, Turnbull and Hart wrote.
“Health-system decision-makers should carefully consider whether the ongoing implementation of restrictive family visitation policies is ethically justified,” Turnbull and Hart wrote. “Much as a data and safety monitoring board is responsible for periodically reviewing study data to ensure participant safety, health systems need to periodically review available data and decide what constitutes an unacceptable threshold for harm in the communities they serve.”
References:
- Ambler M, et al. Ann Am Thorac Soc. 2023;doi:10.1513/AnnalsATS.202209-793OC.
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Sarigiannis KA, et al. Ann Am Thorac Soc. 2023;doi:10.1513/AnnalsATS.202209-797OC.
- Turnbull AE, et al. Ann Am Thorac Soc. 2023;doi:10.1513/AnnalsATS.202302-175ED.