In our prospective longitudinal cohort study of 50 family members of ICU patients at a large university hospital in the United States, anxiety and depression decreased over the follow-up period, approximating rates in the general population at 6 months.13
Despite this, 35% of participants had symptoms of posttraumatic stress related to the ICU experience at 6 months, and 46% of bereaved participants had complicated grief at 6 months.
To our knowledge, our study is the first to measure both posttraumatic stress and complicated grief in family members of ICU patients, and only the second to describe the prevalence of complicated grief in ICU family members. The prevalences of posttraumatic stress and mean IES score in our sample are comparable to those of U.S., French, and British studies of bereaved and nonbereaved family members.3–5
Yet, the prevalence of complicated grief in our study (23%) was much greater than prevalence in the study of Siegel et al. (5%),6
even when we used a more conservative ICG cutoff. Though we used different instruments to measure complicated grief (the original ICG,19,20
versus the ICG-Revised23
), it seems unlikely that this fully explains the discrepant estimates, suggesting true differences in prevalence between our studies. Larger, multicenter studies will be important to better estimate the prevalence rates.
The high prevalences of posttraumatic stress and complicated grief are concerning, because these disorders have a profound impact on physical, mental, and social functioning.3,19,21,24
Assessment and treatment of psychiatric disorders are important roles for primary care physicians,25–27
who are likely to be the first to encounter patients with mental disorders. Our results indicate that patients with a family member in the ICU should be screened for acute anxiety and depression during the ICU experience and for posttraumatic stress and complicated grief after the patients’ discharge or death. Screening for these specific disorders is important because, as this and other studies indicate, patients with these disorders may not have symptoms of anxiety and depression.28
Further, they often do not resolve without specific and intensive psychotherapeutic treatment.3,19,21,24
Although Azoulay et al. found that bereaved family members were more likely than nonbereaved family members to have posttraumatic stress,3
we did not find a difference between the two groups. Our results indicate that the negative effects of an ICU stay on family members’ psychological health is not limited to those who are bereaved. Thus, family members of patients who are still living should be screened as well.
It is unclear whether the lack of association between anxiety, depression, and decision-making role preference in the ICU and posttraumatic stress or complicated grief is authentic or is a result of our small sample size. The finding raises the question of whether the risk factors for anxiety and depression while the patient is in the ICU are the same as the risk factors for posttraumatic stress and complicated grief. Individuals who are distressed during a patient’s ICU stay may not be the same individuals who later develop mental illness; alternatively the effect of the ICU experience may attenuate after a few months. For example, in Tilden et al.’s study, bereaved family members who decided to withdraw life-sustaining treatments in the absence of an advance directive were more likely to have symptoms of posttraumatic stress 1–2 months later, but not at 6 months.5
Also, many risk factors for complicated grief, such as separation anxiety in childhood and dependency,29,30
are independent of the ICU experience. For now, our results suggest that family members of ICU patients should be assessed for posttraumatic stress and complicated grief even if they did not exhibit anxiety and depression during the patients’ ICU stay.
Our study had several limitations. First, our sample was small and demographically homogeneous, being predominantly female and white. Most studies of ICU caregivers have found a predominance of women,3,5,6,10,14,31
and the racial distribution of our study participants is typical of Pittsburgh, PA.31,32
However, our findings will need to be replicated in a larger multicenter study. Second, we collected data from family members of patients in different types of ICUs at different points in the patients’ ICU stay, and we included bereaved and nonbereaved family members. In future studies, it will be important to standardize data collection points (e.g., ICU admission and ICU discharge) and to measure patient-related and ICU-related factors. Third, we only used symptom scales to measure anxiety and depression, which may not adequately detect depression in ICU family members. In part, this may explain the lower prevalence of depression among our participants (6%) compared to bereaved participants in the Siegel et al. study (27%),6
which administered the Structured Clinical Interview for DSM-IV Disorders (SCID).33
Finally, our results could reflect bias introduced by enrollment practices or retention rates. For example, family members who were present in the ICU at the same time as the research nurse may have been systematically different from family members who could only visit on nights or weekends. It will be important in future studies to have study personnel available during evening and weekend hours to enroll family members. Also, family members who chose not to participate in the study may have been systematically different from those who did participate. Unfortunately, data collected at enrollment regarding sociodemographics, relationship to the patient, decision-making role preference, and symptoms of anxiety and depression are not available for family members who were approached but declined to participate in our study. However, when we compared these data from the group of individuals who completed follow-up and the group of individuals who were lost to follow-up, we found no differences.
Given the significant proportion of family members with posttraumatic stress and complicated grief after their ICU experience, it is critical that we better understand the risk factors for developing these syndromes. Some factors, such as communication and decision-making, are modifiable, but the ICU experience is an inherently stressful one for family members. Thus screening and appropriate referral becomes a critical step in curtailing the effects of this experience on family members’ physical, mental, and social functioning.