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Family members and other caregivers of patients with serious illnesses face high levels of stress, particularly when a loved one dies in the intensive care unit (ICU). In many鈥攂ut not all鈥攃ases, the loss leads to post-traumatic stress disorder (PTSD) in the caregivers.

Identifying why PTSD occurs in some caregivers of deceased ICU patients and whether there are underlying factors that predispose to it are the goals of a new cross-sectional study published in The Journal of Palliative Medicine.¹ The research focused on family members who were contacted 鈮�6 months after their loved one had died in the ICU of an urban, academic medical center or were discharged to an inpatient hospice unit. Using a personality model of PTSD, the authors found that family members鈥� personalities, expectations, and style of regulating emotion all contributed to determining their risk of PTSD.

鈥淭he ICU can be a challenging place for family caregivers to understand. It鈥檚 a novel place to many of them, and some aren鈥檛 fully informed about the patient鈥檚 prognosis or their goals of care for a life-threatening condition. Without this background information to understand the ICU experience, some family caregivers will fall back on their personalities鈥攖heir habitual ways of perceiving, emoting, and relating鈥攖o process events,鈥� says first author James Gerhart, PhD, of the Department of Psychology, Central Michigan University, Mt. Pleasant, Michigan, and the Department of Psychiatry and Behavioral Sciences, Rush University Medical Center, Chicago, Illinois. 鈥淚f people happen to fall back on habitual avoidance to cope, then it may be difficult for these caregivers to process the loss of their loved one, and they then keep reliving it psychologically.鈥�

Measurements and demographics

The patients whose 162 family members were studied died in the ICU or were discharged to an inpatient hospice unit between February 2021 and March 2022. Several measures were used to look at factors that might affect caregiver likelihood of PTSD. Participants鈥� personality traits, specifically neuroticism, was measured with four items (such as frequency of mood swings and getting upset easily) with the International Personality Item Pool. Each item then was rated from 1 to 5, with a higher score meaning a higher level of neuroticism. Perception of the unexpectedness of a patient鈥檚 death was evaluated with a scale of 1 to 5 (a higher number signified more agreement) in response to the statement, 鈥淢y loved one鈥檚 death was unexpected.鈥� Other instruments used to measure PTSD were the 10-item Emotion Regulation Questionnaire and the 22-item Impact of Events Scale-Revised (IES-R).

Looking at the demographics of the ICU patients and their family members, the authors noted that:

• The average age of patients was 65 years and 20% were admitted for COVID-19.
• The average age of family members was 55 years.
• Most of the family members were the adult children (45.1%) or spouses (27.8%) of the patients who died, and most had attended college or graduate/professional school.

PTSD scores and personality traits

IES-R scores were higher in younger families and families of patients with COVID-19. The mean IES-R score was in the at-risk range, with 49% of the scores 鈮�24 and 35% of the scores 鈮�33, signifying probable PTSD. In addition, the association between neuroticism and IES-R scores was significant (r=.527, P<.001). Perceived unexpectedness of death of the patient, cognitive reappraisal, and emotional suppression were significantly associated with neuroticism (r=.178, P<.024; r=鈥�.178, P< 鈥�.024; and r=.218, P<.006, respectively), and perceived unexpectedness and emotional suppression had an association with IES-R scores of medium strength (r=.321 and P<.001 for both).

Path analysis findings

Using path analysis, the authors further evaluated these associations and found that neuroticism was directly related to intrusion, avoidance, and hyperarousal symptom clusters (all P<.001 and B=3.92, 2.48, and 2.77, respectively). Perceived unexpectedness of death and emotional expression were associated with intrusive, avoidance, and hyperarousal symptom clusters (P<.05) and cognitive reappraisal was associated with more avoidance symptoms (P=.028).

Looking at indirect effects, it appeared that perceptions of unexpected death partially mediated associations between neuroticism and intrusive symptoms (B=.45, P=.031), whereas emotional suppression partially affected the associations of neuroticism with avoidance (B=.45, P=.010) and hyperarousal (B.37, P=.041). An unexpected finding, according to the authors, was that caregivers who employed cognitive reappraisal were more rather than less likely to exhibit avoidance (B=1.09, P=.028).

Caveats

Several study limitations were mentioned by the authors. Because the research was cross-sectional and the data were self-reported, they were not able to measure how or if the factors reported might have changed in the 6 months after a patient鈥檚 death. Selection bias is possible if being more distressed made participants more likely to participate. The authors also did not ask about reasons for lack of participation, so it is unclear whether the family members who did not consent had different personalities, levels of PTSD, or other variables than those who enrolled. Finally, the study was done at a single medical center and the results may not be generalizable to families of all ICU patients.

Implications for enhancing caregiver support

Family members of ICU patients who rated themselves as having more neurotic personality traits were more likely to think that a patient鈥檚 death was unexpected. They were also more likely to suppress their emotions as a coping mechanism, which then caused more avoidance and hyperarousal symptoms. These findings, the authors said, lead them to believe that 鈥渁ttention to personality factors such as neuroticism could inform the tailoring of consultation and communication interventions, peer support and psychosocial treatments, as well as how the ICU surrogate role is structured and who is selected to fill that role in the ICU. An assessment of personality and coping styles could further inform questions about ongoing stress after patient death or ICU discharge.鈥�

Regarding future studies, Dr. Gerhart said, 鈥淲e need more prospective research around the time of the ICU stay to understand the psychosocial changes caregivers are experiencing. If caregivers are caught off guard by the patient鈥檚 death, it could lead these caregivers to question core assumptions about themselves, the world, and their relationships. Having a family member in the hospital can also be physically taxing at times. We should be looking at whether disruptions in sleep, physical activity, and diet leave some family caregivers vulnerable to longer-term stress.鈥�

The authors also believe there is a need to explore the impact of caregiver interventions before and after a patient鈥檚 stay in the ICU, such as whether education about the ICU education, advanced directives, and goals-of-care discussions might help 鈥渋noculate鈥� caregivers against some of the uncertainty and surprise.

Says Dr. Gerhart, 鈥淥ur team has been focused on how to support caregivers with cognitive behavioral interventions as they recover after the loss of a loved one. Some family caregivers recover on their own with help from their support systems. Others may need targeted intervention to navigate their changing roles and relationships.鈥�

Published: August 07, 2024