Introduction
Published data on the long-term consequences of critical illness have led to the awareness of the problems patients might experience long after being discharged from the intensive care unit (ICU). They might endure impairments in physical, cognitive, and mental health, and this therefore reduces quality of life after surviving critical illness (Needham et al., 2012). The knowledge that this post-intensive care syndrome (PICS) exists has led to the recognition that there is a need for improvement of care, rehabilitation, and follow-up for patients (van der Schaaf, Bakhshi-Raiez, van der Steen, Dongelmans, & De Keizer, 2015).
What might be overlooked is the major burden an admission to the ICU has on the patient’s family. They often take responsibility for the patients’ care after discharge, even though they might be inadequately prepared and are therefore overwhelmed. Recent literature suggests they are prone to develop depression, anxiety, acute stress syndrome, and symptoms of posttraumatic stress (PTSD), following admission of their loved one to the ICU (Davidson, Jones, & Bienvenu, 2012; Schmidt & Azoulay, 2012). In 2010, the Society of Critical Care Medicine incorporated this cluster of complications into a new term, PICS-family (PICS-F; Davidson et al., 2012). This burden on the relatives’ new responsibility as a caregiver may affect their perception of enduring problems or may alter their state of well-being. This is termed caregiver strain (Thornton & Travis, 2003). Caregiver strain may affect their daily functioning or result in difficulty performing as a family caregiver.
In an attempt to define preventive strategies, the American College of Critical Care Medicine Task Force 2004-2005 developed clinical practice guidelines to achieve family involvement in patient care and support, during and after an ICU admission (Davidson et al., 2007). In the United Kingdom, approximately 30% of ICUs have established a follow-up clinic (Griffiths, Barber, Cuthbertson, & Young, 2006). In the Netherlands, approximately 40% of ICUs provide ICU aftercare (van der Schaaf et al., 2015). In 2010, we established, as one of the first, an outpatient post-intensive care clinic in our general hospital. This clinic creates awareness and a better understanding of the existence of ICU-related problems and facilitates care after discharge (Dettling-Ihnenfeldt, de Graaff, Nollet, & van der Schaaf, 2015). However, even though several studies have demonstrated the existence of PICS-F, and suggestions on how to target this syndrome have been made, the level of evidence is low and the exact extent of the problem is unknown.
In this study, we aim to describe the caregiver strain on relatives of critically ill patients who have been discharged from critical care. We also aim to describe which main tasks the caregiver performs. Additionally, we wish to determine the prevalence of developing PTSD-related symptoms in relatives after an ICU admission.
Method
The data of this cohort study were acquired from relatives of patients admitted to the ICU between July 2010 and May 2014. This adult intensive care consists of a 12-bed ICU. We established a post-intensive care clinic based on the recommendations from the National Institute for Health and Clinical Excellence (NICE, 2009) guidelines. A clinical nurse offers patients (mechanically ventilated for more than 48 h and discharged from critical care) a reassessment after 3 months. Using validated and patient-reported questionnaires, we screen for any new physical, cognitive, or psychological impairments or restrictions. If any problems are detected during this assessment, patients can be referred to different health care providers for further treatment. This ICU clinic gives patients (and family members) the chance to pose questions about their time in the ICU and the aftermath of their critical illness. To identify PICS-related problems in family members, we decided to include questionnaires evaluating caregiver strain, PTSD-related symptoms, and the impact this has on daily functioning, for example, employment.
Eligible for participation were relatives of patients (mechanically ventilated for more than 48 h and discharged from critical care) who visited our post-ICU outpatient clinic. Relatives were invited to participate if they met the following inclusion criteria:
* Age 18 years or older
* Closely related (not necessarily blood related) to a patient 18 years or older
* Patient discharged from critical care and alive during the initial caregiver interview
* Involved in care during and/or after hospital admission
Persons with insufficient knowledge of the Dutch language were excluded, as the questionnaires used were written in Dutch only. Visits to the post-ICU clinics were planned 3 months after ICU discharge. This study did not need approval from the Institutional Research Ethics Board because of its noninterventional nature.
Outcome Measures
The Dutch version of the validated Caregiver Strain Index (CSI) was used to measure strains in the domains of employment, time management, and financial, physical, and social status. This self-reported assessment scale consists of 13 questions related to care provision. Each item is answered with a binary yes or no response. A score of 7 or more indicates high levels of strain on the caregiver. A total score of 11-13 indicates severe strain (Robinson, 1983). This questionnaire developed by Robinson (1983) in the 1980s has proven reliable with a good internal consistency (α = .86; Robinson, 1983). In 2003, Thornton and Travis slightly modified the CSI by introducing sometimes to the previously dichotomous answers and once again showed it is an instrument that can quickly identify families with potential caregiving concerns. The current study uses the CSI as produced by Robinson (1983) with dichotomous answers. The Trauma Screen Questionnaire (TSQ) was used to evaluate posttraumatic stress-related complaints acquired after the intensive care admission of their relative. It contains 10 questions concerning the personal reaction to the traumatic event. Each item is answered with a binary yes or no response. A total score higher than 5 indicates the likelihood of PTSD-related symptoms and counseling support might be beneficial (Brewin et al., 2002). An additional self-composed questionnaire was included, concerning questions on the care given (e.g., assistance with personal care, household tasks, or management of medication), the hours spent on giving this care, and the health care utilization or needs of the caregivers themselves (see Supplemental Materials). This questionnaire was developed to evaluate which supplemental care is required, which can then be arranged and provided.
Relatives completed the questionnaires at home prior to the visit to the post-ICU clinic. Patient data, retrieved from medical records, included age, gender, severity of illness on ICU admission (measured by the Acute Physiology and Chronic Health Evaluation II [APACHE II] score), and duration of stay in the ICU.
Statistical Analysis
SPSS Version 19 (SPSS, Inc., Chicago, Illinois) for Windows was used to analyze the data. Descriptive statistics (M ± SD for normally distributed data and median and interquartile range [IQR] for nonparametric and ordinal data) were used to describe demographics and CSI/TSQ scores. Categorical variables are reported as proportions. To observe a relation between two-variable data, we implemented these variables in scatterplots. If a correlation was suspected between baseline characteristics and a high CSI/TSQ score, bivariate analyses were used. As a threshold for statistical significance, p > .05 was used.
Results
A total of 215 patients were mechanically ventilated for more than 48 h and discharged from critical care and therefore met the criteria to be invited to our post-ICU clinic. A total of 106 patients visited the post-intensive care outpatient clinic with a relative (see Figure 1).
Figure 1. Diagram of participant recruitment for the study. ICU = intensive care unit.
The data of 12 caregivers were excluded because they either declined or the questionnaires were not completed. Most relatives were female (71%), with an M ± SD age of 57 ± 16 years, and 76% of the relatives were spouses. Most patients were male (69%), with an M ± SD age of 66 ± 10 years, a median ICU duration of 8 days, and a median APACHE II score of 21. Table 1
displays demographics and baseline characteristics of the study population.
Sixty-five of the relatives (57%) indicated spending 1 h or more per week on caregiving after hospital discharge compared to prehospital admission. Thirty-three (29%) indicated not spending more hours on caregiving after hospital admission. Sixteen (14%) did not answer this question and therefore these data are missing.
The mean time spent on care was 10 h (IQR 6-17 h), ranging from 1-120 h. The most caregiving tasks performed were shopping or running errands (44% of caregivers), routine housework (42%), and accompanying patients to their medical appointments (40%). Twenty of the relatives (18%) indicated they had missed specific aftercare by professionals-for instance, a debriefing conversation before discharge, what to expect from the rehabilitation period, and/or psychological care after discharge. Some indicated they would have preferred (more) help and/or information about medication and other medical actions (e.g., tracheotomy care).
The median CSI score was 3 (IQR 1-6), ranging from 0-12. Five relatives did not complete the questionnaire because they were not involved in caregiving tasks. Twenty (21%) endured levels of strain related to care provision. Of these 20 relatives, 14 (15%) had a CSI score indicating high levels of strain (CSI score 7-10) and 6 relatives (6%) had CSI scores indicating severe strain (CSI score 11-13). Two caregivers scored 7 or higher but did not indicate spending more hours on caregiving after hospital admission. This could indicate that they had already endured a high level of strain before the patient was admitted to the ICU. The most common strains reported were sleep disturbance (40% of relatives), family adjustments (51%), changes in personal plans (42%), and other demands on time, for example, from other relatives (65%).
The median TSQ score was 2 (IQR 0-4), ranging from 0-10. Of the completed questionnaires, 20 relatives (21%) scored 5 or higher, indicating a likelihood of PTSD. The most frequent complaints were distressful thoughts or memories relating to the event that arise against one’s will (44%), difficulty falling or staying asleep (39%), and a heightened awareness of potential dangers to yourself and others (31%).
Forty-four of the relatives (47%) were carrying out gainful employment before hospital admission. After hospital discharge, 42 relatives (45%) reported that they were still working. Eleven (26%) reported employment reduction compared to the situation before hospital admission; the median hours spent on work was 32 (IQR 20-38) before hospital admission and 29 (IQR 20-38) after ICU admission. Two of the caregivers reported working more hours.
No correlation was found between the age and gender of the relatives and the CSI and TSQ score. In addition, there was no correlation between the APACHE II score, the duration of the patient’s ICU stay, and the score of the CSI and TSQ. The average hours spent on care also did not influence the total scores.
Discussion
As admission to an ICU can produce significant turmoil in the lives of both patients and their relatives, the objective of this study was to assess the strain of caregiving and to determine the risks of developing PTSD-related symptoms. We found that 21% of the caregivers reported a level of strain endured due to care provision. Six percent of caregivers indicated they experienced extremely high levels of strain. The median hours spent weekly on care was 10 (IQR 6-17). The most caregiving tasks performed were routine housework, shopping/running errands, and accompanying patients to their medical appointments. Twenty-one percent of the caregivers experienced PTSD-related symptoms 3 months after discharge. There was no correlation between the height of the CSI/TSQ scores and the age, gender, severity of the patient’s illness, and average hours spent on caregiving.
Our findings suggest that a high level of strain exists in 21% of the relatives, but literature supporting this result does not exist. The CSI has not previously been used as an outcome measurement in caregivers of ICU survivors. It has been proven a valid and feasible method in family members of stroke patients (Post, Festen, van de Port, & Visser-Meily, 2007; van Exel et al., 2004). What has previously been reported in family members of ICU patients is caregiver burden. Caregiver burden is defined as the physical and/or emotional response to caregiving challenges. Caregiver strain is defined as the caregivers’ perception of enduring problems or altered state of well-being, consequently caused by burden (Thornton & Travis, 2003). Burden has been previously examined using the Brief Zarit Burden Interview as a screening instrument (Haines, Denehy, Skinner, Warrillow, & Berney, 2015). Two months after discharge from critical care, caregiver burden exists in as many as 36% of relatives (Choi et al., 2012).
Twenty-one percent of the relatives of patients admitted to our ICU experienced PTSD-related symptoms 3 months after discharge from critical care. Only a few previous studies have been published on PTSD-related symptoms in caregivers. It is difficult to compare our results to earlier literature as our study used the TSQ. This questionnaire is not widely used among caregivers, but as we are used to this screening method to screen for PTSD-related symptoms in our patients, we chose this questionnaire for screening relatives as well. Previous studies were executed using the Impact on Event Scale (Brewin et al., 2002; Horowitz, Wilner, & Alvarez, 1979). Using this scale, studies reported a prevalence among family members as high as 41% three months after discharge (Sundararajan, Martin, Rajagopala, & Chapman, 2014) or 49% six months after discharge (Jones et al., 2004), which therefore indicates the need to offer formal counseling to close relatives. Jones et al. (2004) also found that PTSD-related symptoms in caregivers correlate with PTSD-related symptoms in patients. Azoulay et al. (2005) reported that PTSD-related symptoms were more common in relatives who shared in (end-of-life) decision making.
Day, Haj-Bakri, Lubchansky, and Mehta (2013) are among the few to report on sleep quality among family members of ICU patients. They found that 65% could experience difficulty sleeping during their family member’s ICU admission due to anxiety and tension. Our results suggest that the quality of sleep is continuously disrupted 3 months after discharge from critical care; around 40% of relatives have reported sleeping difficulty. This is of significant importance as the caretaking ability of relatives can be adversely affected by sleep deprivation.
Even though this was not our primary aim, the results show that one quarter of the relatives had reduced their hours of gainful employment prior to hospital admission and that 2% had completely stopped working. Recently, the Dutch Social and Cultural Planning Office (2015) reported higher work absenteeism when work and caregiving were combined. It found that 18% of the caregivers reported being on sick leave for at least 2 consecutive weeks compared to 10% before performing caregiving tasks. It also reported an increase in the total number of caregivers (mostly female) in the Netherlands, from 13% in 2004% to 18% in 2012. Ågård, Lomborg, Tønnesen, and Egerod (2014) recently showed that partners went on extensive sick leave in the 12 months following ICU stay. Van Pelt et al. (2007) showed that 14% of caregivers had stopped working to provide care. Griffiths et al. (2013) have shown that as many as 50% of caregivers had to make some adjustments to their working life to accommodate their caregiving responsibilities 12 months after discharge.
Therefore, this study and previous studies, even though scarce, have revealed that relatives could endure psychosocial and physical symptoms during and after an intensive care admission. In addition, even though the magnitude of the problem is not clearly defined, and caregiver strain and PTSD-related symptoms were relatively low in our study, it does provide further support that there may be high-risk groups of caregivers. Future research is needed to detect these groups at risk and implement targeted interventions. Kentish-Barnes, Lemiale, Chaize, Pochard, and Azoulay (2009) suggest that family burden should be routinely evaluated at three different time points during an ICU admission. However, with growing evidence showing that even long after hospital discharge, caregivers could experience problems in different domains, we believe follow-up is necessary. This will allow us to gain further insight into the specific needs and thus provide the additional interventions during hospital admission and at home.
Earlier research has indicated that we must acknowledge the importance of relatives’ participation in patient care, give them frequent updates and consistent information, include them in decision making, and let them be actively involved in patient care (if they feel comfortable doing so) to help prevent PICS-F (Davidson et al., 2007). The implementation of a post-intensive care clinic at our hospital has resulted in beneficial effects on identifying potential problems and providing necessary support (Dettling-Ihnenfeldt et al., 2015). Although it is imaginable that a post-ICU clinic could have a beneficial effect on postdischarge outcome, evidence has yet to be provided (Williams & Leslie, 2008). Patients and their relatives have reacted positively to our post-ICU clinic. They are pleased with the fact that they can discuss their experiences (Dettling-Ihnenfeldt et al., 2015), and it enables them to generate a better understanding of what they experienced during their ICU stay (Engström, Andersson, & Söderberg, 2008). Relatives visiting our post-ICU clinic state they missed a debriefing visit after discharge, and recent articles likewise mention the appreciation of these visits (Engström et al., 2008).
The small sample size of this study is probably the reason for not finding a correlation between baseline characteristics available and the prevalence of high strain or PTSD-related symptoms, whereas previous studies did report a variety of predictors for developing PICS-F symptoms. These risk factors include younger patient and relative age, female gender, a lower educational level, preexisting depression, and anxiety symptoms (Azoulay et al., 2005; Choi et al., 2012; Davidson et al., 2012). A greater functional dependency and comorbidities are also associated with increased burden and psychological problems (Haines et al., 2015). We found that the person indicating spending 120 h on caregiving did, however, score as having severe strain on the CSI questionnaire.
Our study has some important limitations that should be noted. First, no information was collected on the relatives’ previous psychosocial status or previous caregiving tasks. We, therefore, could not examine the difference between strain and PTSD-related symptoms before and after hospital admission. This begs the question whether the same level of caregiver strain and PTSD-related symptoms existed before hospital admission. Inclusion of more relevant baseline characteristics would have been helpful to assess the applicability and comparability of results in other studies. Second, a large proportion of patients and caregivers declined the invitation to visit our post-ICU clinic (Figure 1). The question arises whether this avoidance is due to the fact that visiting the clinic can trigger a recall of distressing memories and emotions in patients and caregivers, or perhaps they declined because they had no health issues and no longer needed further assistance. Another important limitation is that this study did not include a questionnaire to evaluate the prevalence of anxiety and depression symptoms, whereas recent literature does indicate depression symptoms as the most commonly reported psychological adverse effect (Haines et al., 2015). Van Pelt et al. (2007) report a high risk of depression (23%) among caregivers 12 months after hospital discharge. Lifestyle disruption and employment reduction were also common and persistent. Finally, this study relies on self-reports rather than assessments performed by professionals. In addition, although the CSI and TSQ have proven to be reliable screening methods and are easily administrable (Brewin et al., 2002; Deeken, Taylor, Mangan, Yabroff, & Ingham, 2003; Robinson, 1983), self-report is prone to response bias and dishonest reporting (Huang, Liao, & Chang, 1998). The choice of outcome measures is debatable, and in the future, widely used questionnaires might improve consistency of results with other studies to date.
In conclusion, this study adds to the small amount of data available on the existence of PICS-F. We have shown that relatives could develop caregiver strain and PTSD-related symptoms, incurring a negative effect on sleep and employment. Future research with a larger sample size, extended baseline characteristics, and widely used screening methods is therefore needed to evaluate the extent of the existence of PICS-F and the impact that interventions and post-ICU clinics can have on postdischarge outcome.
Supplemental material:https://doi.org/10.1037/rep0000081.supp
Acknowledgements
Corresponding Author
We thank Annemarie Heinig-Korteweg (Tergooi Hilversum) for her assistance with the data entry and J. M. van Rossem for providing language assistance.Correspondence concerning this article should be addressed to Sascha A. van den Born-van Zanten, MD, Tergooi Hospital, PO Box 10016, 1201 DA Hilversum, the Netherlands
Email: [email protected]
Publication History
Received April 1, 2015
Revision received December 12, 2015
Accepted December 21, 2015
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