Background
Critical illness has a profound impact on the well-being of family members [
1‐
3]. Families experience high levels of stress and uncertainty during a close other’s stay in an intensive care unit (ICU) [
4‐
6], which negatively affects their mental health post-ICU [
7,
8], particularly in the event of life-threatening illness that required surrogate decision-making and resulted in the death of the critically ill family member [
8,
9]. Post-ICU psychological distress affects a considerable proportion of family members and includes symptoms of anxiety, depression, posttraumatic stress, complicated grief, and caregiver burden [
10‐
12], which have been clustered under the term post-intensive care syndrome – family (PICS-F) [
7,
13]. Prevalence of PICS-F in an adult population is reported to be between 20 to 60% within the first 3 months, but varies according to the specific symptom and ICU population studied, measures used, and the time-point of assessment [
10,
13,
14]. Psychological distress not only increases family suffering, but affects family members’ functioning in everyday life, and limits their ability to engage in caregiving activities needed by the survivor of critical illness, who may also suffer from a adverse consequences in their physical and mental health [
10,
14‐
17].
To reduce the prevalence of adverse family response to critical illness, attention to factors affecting post-ICU psychological distress is called for. A number or family member-, patient-, and care-related, potential risk factors have been put forward as influencing the incidence of psychological distress in these families [
10,
11,
13‐
15]. Family member-related risk factors for post-ICU psychological distress include female gender, younger age, being a close relative, lower education, and prior mental health issues [
8,
18‐
23]. Unexpected admission to ICU, length of stay, severity of illness, death and younger patient age have been defined to be patient-related risk factors for PICS-F [
9,
10,
13,
19,
21]. In terms of care-related factors, satisfaction with ICU care [
15,
24], poor communication that fails to meet needs or includes inconsistent information [
8,
9,
11,
15], and involvement in end-of-life decision-making that does not correspond with families’ preferred decision-making style [
9,
13,
19] have been found to be associated with adverse outcomes. While the literature consistently suggest that family-, patient-, and care-related factors play a major role in the incidence of post-ICU psychological distress, research evidence remains inconclusive, particularly around family satisfaction with care, family-related factors such as type of relationship or demographic variables, and patient-related characteristics such as the cause of admission or length of stay.
Given the high prevalence of long-term consequences of critical illness for families, it is important to identify those who are most at risk and to reduce factors that promote psychological distress in family members. We therefore investigated the relationship between family-, patient-, and care-related risk factors for adverse family responses to critical illness and family member depression, anxiety, and posttraumatic stress within the first 3 months post-ICU in a Swiss sample of families of adults treated in ICU.
Discussion
This cross-sectional study with 214 family members of adult persons treated in ICU examined the relationships of care-, family member-, and patient-related risk factors with depression, anxiety and posttraumatic stress. We found that higher levels of family satisfaction with ICU care were associated with lover levels of all three measures of psychological distress (depression, anxiety and posttraumatic stress). While family member characteristics were not significantly associated with any measure of psychological distress, higher patient age was associated with lover levels of depression, and less conclusively with anxiety. Patient death was associated with higher levels of depression and posttraumatic stress.
Our study confirms a high prevalence of post-intensive care syndrome in family members of critically ill persons within the first weeks post-ICU discharge or death. Posttraumatic stress was more prevalent in our sample than previously reported, whereas anxiety and depression occurred in a similar proportion of family members compared to other studies [
9,
35‐
37]. The higher rate of posttraumatic stress might be due to the fact that data were collected relatively shortly after ICU discharge or death, when the ramifications of critical illness are still acute [
1,
19,
20]. Moreover, different cut-off levels have been used for the HADS and IES-R, which makes comparisons across studies more difficult [
10,
13].
Satisfaction levels in our sample were high, but within the ranges reported in other studies [
38,
39]. Our hypothesis about the relationship between family satisfaction with intensive care and psychological distress was confirmed. Those family members who were more satisfied with the quality of care also experienced lower levels of depression, anxiety, and posttraumatic stress. Based on our data set, the direction of the association remains unclear and cannot be assessed because satisfaction and psychological distress variables were measured at the same time. A previous study, however, suggested that lower satisfaction with information and decision-making predicts depression, but not anxiety [
40]. The consistency across all three outcomes is notable, as it suggests that quality of patient and family care might be closely associated with the negative consequences of ICU treatment on family members’ health and well-being. Previous research has found that insufficient communication and lack of involvement in decision-making increases level of post-ICU anxiety and posttraumatic stress [
9,
19,
24]. Satisfaction is higher in those families whose needs have been met, particularly in relation to communication and decision-making preferences [
41‐
43]. Another study reported that nurse competency, concern and caring, completeness of information, and dissatisfaction with decision-making were independent predictors of dissatisfaction with ICU care [
44]. Hence, a focus on amendable factors of ICU care is necessary. It seems that investing in family support and quality of communication may improve satisfaction with ICU care, and therefore be potentially relevant for reducing negative ramifications for family member post-ICU mental health [
45,
46]. However, our study is unable to make inferences around the causal direction of the relationship among satisfaction with intensive care and post-ICU psychological distress. Moreover, the relationship between patient outcomes and family satisfaction remains unclear. While some found that satisfaction with care is higher in family members of patients who died than in those who survived [
47], others did not identify such a difference [
38,
44].
Our study did not identify a statistically significant relationship between family members’ characteristics and psychological distress measures. Previous research has identified that female gender, younger age, and lower education levels are associated with depression, and to a lesser extent with anxiety and stress at some point within the first 6 months post-ICU [
3,
9,
18‐
22,
37,
48]. Being a spouse or an adult child has also been found to be associated with higher levels of psychological distress [
1,
8,
19,
37]. However, no clear pattern is evident in terms of the exact outcome predicted, and findings vary among studies. Our study suggests that overall, pre-existing family-related characteristics, such as age, gender and type of relationship may play a subordinate role among predictor variables for family member post-ICU psychological distress. While these pre-ICU family member characteristics have come to be commonly understood as risk factors [
10,
11,
13,
15], their evidence base might be less clear than suggested [
22,
23].
Among the investigated patient-related factors, younger patient age was negatively associated with depression and anxiety, although not to a statistically significant extent when it comes to anxiety. It seems intuitive that critical illness in younger persons might be less expected, therefore increasing depression post-ICU. In fact, some studies found that younger age is associated with depression, anxiety, or posttraumatic stress in family members [
23,
49]. However, other research was unable to find a statistically significant relationship between patient age and family members’ psychological outcomes [
20]. Patient death was associated with higher levels of depression and posttraumatic stress, but not with anxiety in our study. It may well be that anxiety is less in the foreground after the close other has died, as symptoms of depression and posttraumatic stress move more to the foreground. It is not surprising that bereaved family members experience psychological distress, particularly so when end-of-life and circumstances of dying were difficult for family members and associated with uncertainty and helplessness [
9,
37].
The non-significant, but notable negative relationship between organ transplantation and depression levels might be due to the fact that organ transplantation instills hope, as it enables a second chance for life. As such, families might be less depressed following an ICU stay for transplantation, but still experience anxiety and stress alike family members whose close others were admitted to ICU for other reasons. This might also explain why other causes of admission were not statistically significantly associated with adverse health outcomes, even though unexpected illness or unplanned admission have been identified as a risk factor for family member psychological distress [
11,
13]. Some have also found that indicators of severity of illness, such as the presence of mechanical ventilation, a more dynamic illness course or longer length of stays in ICU impact negatively on family member mental health [
8,
21]. We only assessed length of ICU stay and found no association with family member psychological distress, along with others [
22,
50].
Limitations
Our study is not without limitations. First, it denotes a secondary analysis of a single-center study [
51]. Only half of those invited to take part did return a completed questionnaire. As a consequence, representativeness of our sample of the population remains unclear, and generalizability of our findings remains limited. The care offered to families changed during the course of the study, with a family nurse delivered support service that was introduced to the unit [
52]. While we derived our hypothesis from pre-existing research, we were not able to assess all potential risk factors, such as severity of illness, duration of relationship, quality of communication or end-of-life care, which limits our models. We had only one time-point of assessment, which varied between one to twelve weeks post-ICU discharge or death, with about half returning a questionnaire within the first 4 weeks. Moreover, satisfaction with ICU care was measured at the same time as psychological distress, making inferences about causal relationships impossible. These design limitations need to be taken into account when interpreting our study’s results. Nonetheless, this study uses a solid data set with a sufficient number of participants. It utilized well-established and psychometrically sound instruments to assess family outcomes. As such, it adds important research-based insights into pre- and intra-ICU risk factors for post-ICU psychological distress in families.
Conclusions
Our findings indicate that family members of younger patients and of those who die are at risk for adverse mental health outcomes, and may need specific support, particularly at the end-of-life and into bereavement. Family-related factors, however, may play a subordinate role. The potentially amendable, care-related factor - families’ satisfaction with ICU care – was strongly, and most clearly, associated with family well-being post-ICU. ICU staff is therefore called to ensure high-quality ICU care to families that is tailored to their needs and preferences, consisting of optimal information provision, ongoing communication and interaction, and emotional and practical support. ICU policies around family involvement, engagement and support need to guarantee sufficient staff capacity and skills in working with families. Future research is needed to discern the pathways and the direction of association between satisfaction with care and similar, amendable indicators of quality of ICU care with family member psychological distress. Multi-centre studies with larger, more representative and homogenous samples that assess psychological distress longitudinally at fixed time intervals will increase understanding of factors predicting family members’ psychological distress post-ICU.
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