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Caregivers of Long-term Ventilator Patients^*

Physical and Psychological Outcomes

^* From Case Western Reserve University, Cleveland, OH.

Correspondence to: Sara L. Douglas, PhD, RN, School of Nursing, Case Western Reserve University, 10900 Euclid Ave, Cleveland, OH 44106-4904; e-mail: SLD4{at}po.cwru.edu

	Abstract

TOP Abstract Introduction Materials and Methods Results Discussion References

 
Study objectives: The physical and psychological effects of caregiving have been examined in several populations. To date, no one has examined the effects of caregiving on caregivers of patients receiving long-term mechanical ventilation (LTV) [patients who required > 4 days of continuous in-hospital mechanical ventilation] who reside in a home or institutional setting after hospital discharge. The purpose of this study was to describe the characteristics and examine depression, burden, overload, and physical health in this caregiver population over a 6-month period after hospital discharge.

Design: This was a prospective longitudinal descriptive study of posthospital outcomes for patients receiving LTV and their caregivers.

Setting and participants: Caregivers of 135 patients receiving LTV admitted to the ICUs of a university medical center, a Veterans Administration hospital, and small community hospital were enrolled.

Measurements and results: Interviews of caregivers were conducted at hospital discharge and 6 months later. Descriptive statistics, analysis of variance, and multiple regression analyses were used to analyze the data. Established tools were used to assess caregiver depression, burden, overload, and physical health. Caregivers reported a drop in physical health scores from hospital discharge to 6 months after discharge (p = 0.0001). Caregivers of patients residing in an institution reported higher depression (p = 0.039) and overload scores (p = 0.002) than did caregivers of patients residing at home 6 months after discharge; 51.2% of caregivers at discharge and 36.4% at 6 months after discharge reported symptoms consistent with some degree of depression. In addition, 12.2% of caregivers at hospital discharge and 15.6% at 6 months after discharge were classified as having symptoms consistent with severe depression. Caregiver physical health (p = 0.025) and overload (p = 0.006) made statistically significant contributions to explaining caregiver depression.

Conclusions: Caregivers of patients receiving LTV in our sample have similar characteristics to other caregiving populations. However, our sample had higher depression scores than those reported for many other caregiver groups.

Key Words: burden • caregivers • Center for Epidemiological Studies depression scale • chronically critically ill • critical illness • depression • long-term mechanical ventilation • mechanical ventilatory support • overload • physical health status

	Introduction

TOP Abstract Introduction Materials and Methods Results Discussion References

 
Much has been written about the impact of major illness on the lifestyles and finances of patients and their families.^{1 2} Thus far, research has tended to focus on caregiving associated with several specific populations, such as the infirm elderly,³ and persons with Alzheimer disease,^{4 5} multiple sclerosis,⁶ cancer,⁷ and COPD.⁸ The issues identified by these studies appear to be relatively consistent across these disability groups, and include depression,^{9 10} overload,¹¹ burden,¹² and personal health issues.^{3 9 13} Caregivers have been shown to not only neglect their own health problems but to report a decline in health over the course of the caregiving experience.⁸ In addition, caregivers also report a sense of role overload and burden that builds over time and is cumulative.¹³

Depression is an effect of caregiving that has been widely examined. It is widely reported among caregivers, especially among women^{9 13} and those younger in age.¹³ Other variables shown to relate to caregiver depression are functional status of the care receiver,⁹ the presence of cognitive impairment in the care receiver,^{5 9} the location of the care receiver,¹⁴ the caregiver’s rating of physical health,^{3 9 13} and the caregiver’s burden and overload.^{11 12 13} To date, these variables have been primarily studied in caregivers of patients with Alzheimer disease, cancer, and such chronic illnesses as COPD.

Caregivers of patients receiving long-term mechanical ventilation (LTV) are potentially at risk for depression, burden, overload, and declining health over time. Patients receiving LTV comprise approximately 3 to 6% of all ICU admissions, while consuming a disproportionate amount of intensive care resources. These patients are often elderly with a variety of underlying chronic conditions that complicate or exacerbate their acute illness. Approximately 35 to 50% of them die in the hospital, and most discharges are to an extended-care facility. After hospital discharge, these patients have a slow recovery of functional status, a high mortality, and a high readmission rate.^{15 16}

There has been considerable research examining caregiver depression, burden, and overload in caregivers of some chronically ill patient groups, but these issues need to be examined among caregivers of patients receiving LTV.⁸ In addition, research is needed on long-term outcomes and experiences of caregiving over a period of time so that health-care providers can adequately prepare caregivers for the activities required of them and help identify resources necessary to minimize caregiver stressors.¹⁷ Therefore, the purposes of the present study were as follows: (1) to describe characteristics of caregivers patients receiving LTV; (2) to document the incidence of caregiver depression, burden, overload, and physical health in these caregivers over a 6-month period after hospital discharge; and (3) to examine the relationship of selected variables to caregiver depression 6 months after hospital discharge.

	Materials and Methods

TOP Abstract Introduction Materials and Methods Results Discussion References

 
This study was part of a larger prospective longitudinal descriptive study designed to examine outcomes after hospital discharge for patients receiving continuous LTV > 4 days while in the ICU. While the focus of this study was on outcomes after hospital discharge, the eligibility criterion of > 4 days of continuous mechanical ventilation while in the ICU was established while the patient was still in the hospital. A majority of the patients in our sample required no mechanical ventilation after hospital discharge.

The criterion of > 4 days of mechanical ventilation was chosen for several reasons. There has been no consensus about what constitutes "long-term" ventilation. Criteria used by others include 10 days,¹⁸ 7 days,¹⁹ 3 days,^{20 21} and 48 h.²² There is growing recognition, however, that the requirement for ventilatory support beyond the first few days of a medical crisis or postoperative period is indicative of complex physiologic derangement associated with further morbidity. This is reflected in the use of 5 days as the cut point by the Society of Thoracic Surgeons to identify LTV. The International Classification of Diseases, Ninth Revision (ICD-9) also uses the 5-day mark to differentiate short-term from long-term patients.

In addition, the definition of "caregiver" varies as well.⁹ For this study, all people who identified themselves as principal caregivers or whom the patient identified as a primary caregiver (the caregiver being defined as the person who gives a majority of the care that is needed) were deemed to be the caregiver of that patient receiving LTV. This definition has been utilized in several other studies involving the impact of serious illness on caregivers.^{1 23 24}

The study was conducted at three sites: (1) a university medical center; (2) a university-affiliated Veterans Administration medical center; and (3) a small community hospital. All three sites were located in Cleveland, OH. The study was approved and reviewed annually by the institutional review boards of the University Hospitals of Cleveland, the Veterans Administration Medical Center, and Case Western Reserve University. Patient eligibility criteria needed to be met and patient consent obtained before the caregiver could be identified. Patient eligibility criteria were as follows: age 18 years, the ability to speak English, and > 4 days of continuous mechanical ventilation while in the ICU. All diagnoses were accepted. Patients who required mechanical ventilation at home before becoming hospitalized were not eligible for enrollment. Caregiver eligibility criteria were as follows: age 18 years, the ability to speak English, and the person designated by the patient (or if patient unable to speak, the person who identified themselves) as the principal caregiver.

From February 1997 to August 1998, research nurses screened all patients admitted to all ICUs at the three study sites to determine patient eligibility. The research nurses tracked eligible patients during their hospital stay, and patients (or their proxies) were approached for written informed consent once the patient was close to hospital discharge. After a patient gave written consent to participate in the larger study, the caregiver was identified and approached for written informed consent to participate in the caregiver portion of the study. Patients and their caregivers were followed up for 6 months after hospital discharge.

Prior to data collection, research nurses were trained in the use and administration of all interview tools. Interrater reliabilities between the research nurses was assessed; acceptable reliabilities of 90% agreement as well as Pearson correlations of at least 0.80 (for continuous variables) and s of 0.70 (for categorical variables) were established before data collection proceeded.^{25 26} Every 3 months throughout the data collection period, ongoing interrater reliability was also assessed and retraining occurred if reliabilities fell below acceptable levels.

Caregivers were interviewed twice: the first interview was conducted within 2 weeks of the patient’s hospital discharge, and the second interview was conducted 6 months later. The purpose of the interviews was to assess the caregiver’s depression, overload, burden, and physical health status.

Instruments used for data collection purposes for caregivers were as follows: The Center for Epidemiologic Studies depression scale (CES-D) was used to measure depressive symptomatology after hospital discharge. The CES-D was chosen because it focuses on distress symptoms prevalent among nonpsychiatric populations and was intended as a measure of depressed mood.²⁷ The CES-D has been tested with community samples and is appropriate to use in all populations regardless of age, sex, and socioeconomic status.²⁷ The CES-D is a 20-item tool that uses a 4-point Likert-type summative scale (0 indicating "rarely" to 3 indicating "most or all of the time"). Scores range from 0 to 60, with higher total scores indicating more depressed mood. Levels of depressive symptoms based on total CES-D scores have been defined as follows: 0 to 15 = not depressed, 16 to 20 = mild depressed mood, 21 to 30 = moderate depressed mood, and > 30 = severe depressed mood. Test-retest reliability scores have been reported from 0.85 to 0.90, with Cronbach scores from 0.89 to 0.92.²⁷ Validity of the tool has been established by examining correlations between the CES-D scale and other scales that assess depressive symptoms (eg, Labin scale, Bradburn negative affect scale). Correlations ranged from 0.50 to 0.70.²⁷

Caregiver overload (also described as subjective burden or burnout by other researchers) was defined as negative attitudes toward or emotional reactions to the caregiving experience.²⁸ It has also been described as a primary stressor arising from caregiving that has an impact on mental health outcomes and depressive symptomatology in caregivers.^{11 28} The overload scale from the "consequences of caregiving" tool was used to measure caregiver overload. This is a 4-item scale in which respondents report on a 4-point continuum the extent to which caregiving impacts their energy level and such areas as exhaustion, feelings of being overwhelmed, and feelings of not making any progress in their role as caregiver. Scores range from 4 to 16, with higher scores indicating higher degrees of caregiver perceived overload in such areas as life, energy, time etc. The mean score for the scale has been reported to be 10.2.¹¹ Cronbach values of 0.80 have been reported.¹¹

Objective burden was defined as the extent of disruptions or changes in various aspects of the caregiver’s life and household, and was measured using the "objective indicator" portion of the "objective and subjective burden" tool.²⁹ The objective indicator scale is a 9-item scale in which respondents report on a 5-point continuum the extent to which their caregiving behaviors had changed nine areas of their lives, such as their personal health, and the amount of privacy, time, and personal freedom they had for themselves. The nine areas included are aspects of the caregiver’s life that previous research has identified as most frequently affected by the caregiving experience and which could relate to such outcomes as physical health problems, depression, and anxiety.²⁹ Scores range from 9 to 45, with higher scores indicating higher degrees of objective caregiver burden. Cronbach values of 0.85 have been reported.²⁹

Caregiver physical health was measured by asking caregivers to rate their own physical health using a 5-point Likert scale that ranged from poor (score of 1) to excellent (score of 5), with higher scores indicating better caregiver physical health as rated by the caregiver. This measure of assessing caregiver physical health has been used in several large studies of caregiver distress.⁹

Some additional measures were utilized to assess patient (care receiver) variables of interest. Functional status of the patient was measured using the physical dimension score from the sickness impact profile (SIP) tool. The entire SIP tool consists of 136 questions regarding physical functioning and psychosocial functioning for the individual on the day that it is administered. The SIP measures health status (physical and psychosocial) by assessing the impact of sickness on daily activities and behavior; the higher the score, the greater the negative impact that illness has had on the physical or psychosocial dimension of the patient’s life. The physical dimension of the SIP consists of 45 items that assess the impact of illness on the areas of ambulation, mobility, body care, and movement. Scores range from 0 to 100, with higher scores indicated a higher negative effect of illness on physical functioning. The SIP has been tested on patients with COPD, on ICU patients, and on patients with a variety of chronic illnesses.³⁰ Test-retest reliability of 0.94 has been reported, and internal consistency has been reported from 0.81 to 0.97.³⁰ Construct validity has been reported.³⁰

Patient cognitive status was assessed using the Katzman short orientation-memory-concentration test (KOMCT). The KOMCT is a 6-item test with weighted scores for incorrect responses; it is used to assess if subjects are cognitively impaired.³¹ The range of total points is 0 (normal) to 28 (cognitive impairment), with a score 6 correlating with dementia. This tool has reported reliabilities ranging from 0.89 to 0.92, and is reported to be valid for use in patients in nursing homes, in health-related facilities, and in the community.³¹ For the purposes of the present study, if a patient scored 6 points on the KOMCT, he or she was classified as cognitively impaired.

	Results

TOP Abstract Introduction Materials and Methods Results Discussion References

 
The enrollment period began in February 1997 and ended in August 1998. For a detailed diagram of subject identification and enrollment, see Figure 1 . Based on data from a pilot study in which every patient receiving mechanical ventilation in all of the ICUs was tracked for 6 weeks, we established that 25% of all patients admitted to the ICUs received mechanical ventilation, and that 78.5% of all patients receiving mechanical ventilation were ineligible for our study because they received mechanical ventilation for < 96 h. Based on ICU admission data during the enrollment period, we estimated that 2,371 patients receiving mechanical ventilation were assessed for eligibility. Figure 1 outlines subject identification and enrollment. All 135 caregivers approached gave written consent to participate in the study.

View larger version (32K): [in this window] [in a new window] [Download PPT slide]   Figure 1. Diagram of subject identification and enrollment.

Caregiver Characteristics
A description of demographic variables and other variables of interest for caregivers of patients receiving LTV is shown in Table 1 . In general, caregivers of long-term patients were predominantly female, middle aged, employed, and related as spouse or child of the patient. In addition, a majority were living in a private residence, with slightly more than half of the caregivers living with the patient prior to this current hospitalization. At hospital discharge, caregivers reported providing an average of 5.6 h/d in caregiving-related activities (8.4 h for patients at home; 4.4 h for patients in an institution). In addition, a majority (70.1%) of caregivers had the caregiving assistance of family or friends.

Patient Characteristics
A description of patient characteristics (n = 135) is presented in Table 2 . In general, the median hospital length of stay was 30 days (range 4 to 202 days) and the median ICU stay was 17 days (range, 5 to 183 days). Prior to the index hospitalization, 13.5% of the patients were living in an institutional setting (eg, extended care facility or hospital) while 86.4% were living in a home setting (usually their own home). The three most common diagnoses (using ICD-9 codes) were coronary artery disease or congestive heart failure, COPD, and diabetes. The admitting diagnoses were varied: cardiac surgery, treatment of cancer, acute myocardial infarction, digestive disorders, and organ transplant. A majority (69.9%) of the patients who survived hospitalization were discharged to an institutional setting: 40.4% to a nursing home, 26.5% to a rehabilitation center, and 3% to another hospital. Only 30.1% of patients were discharged to home (either their own or to their caregiver’s home). On average, using physical dimension SIP scores, patients believed that almost half (44.6%) of their physical functioning had been negatively affected by their illness.

Caregiver Health, Burden, Overload, and Depression
At hospital discharge, 17.8% (n = 14) of caregivers who remained in the entire 6-month postdischarge portion of the study reported their health to be poor or fair (rating of 1 or 2). By 6 months after discharge, 29% of these caregivers reported their health to be poor or fair. The mean physical health scores are reported in Table 3 , with the drop in mean health scores from hospital discharge to 6 months being statistically significant (p = 0.0001). At the 6-month interview, 36.1% of caregivers reported that they had seen negative changes in their health in the previous 6 months.

Of interest was whether the effects of caregiving were different depending on the disposition of the patient (home vs institution). Using analysis of variance, we compared the mean 6-month CES-D, overload, burden, and physical health scores of caregivers of patients residing in an institution (nursing home or rehabilitation center) to caregivers of patients residing at home. Caregivers of patients residing in an institution reported higher CES-D, overload, and burden scores at 6 months while also reporting lower physical health scores than did caregivers of patients residing at home at 6 months. These differences were statistically significant for two variables: CES-D (p = 0.039) and overload (p = 0.002). Caregivers of patients who resided in an institution reported, on average, a CES-D score of 19.6 (SD, 14.2) vs a score of 12.4 (SD, 11.9) for caregivers of patients residing at home. As expected, patients residing in an institution had more physical limitations (p = 0.0001) and were more likely to be cognitively impaired (p = 0.043) than those residing at home.

Specific examination of CES-D scores revealed more information regarding caregiver depression. Caregiver depression by categories of depression at hospital discharge and 6 months later is reported in Figure 2 . About half (51.2%) of caregivers reported symptoms consistent with some degree of depression (CES-D score 16) at hospital discharge with the percentage dropping to 36.4% by 6 months after discharge. Of note is that 12.2% of caregivers were classified as having symptoms consistent with severe depression at the patient’s hospital discharge; by 6 months, 15.6% of caregivers were classified as severely depressed.

View larger version (23K): [in this window] [in a new window] [Download PPT slide]   Figure 2. Categories of caregiver depression (CES-D) at discharge (n = 135) and 6 months later (n = 77).

View larger version (20K): [in this window] [in a new window] [Download PPT slide]   Figure 3. Changes in levels of caregiver depression (CES-D) over time (n = 77).

Using regression analysis, the nine independent variables were regressed on the 6-month CES-D scores and explained 68.6% of the variance. The standardized coefficients and corresponding significance are reported in Table 4 . Only two independent variables made statistically significant unique contributions, with all variables in the equation. Those variables were caregiver rating of their own physical health, and caregiver overload. Caregivers who reported poor physical health and those who reported high overload scores were more likely to report higher CES-D scores than caregivers who reported good physical health and low overload scores.

	Discussion

TOP Abstract Introduction Materials and Methods Results Discussion References

A second finding worth noting is that the caregivers in our sample also demonstrated similar effects (or outcomes) of caregiving as had been found in other studies. Our caregivers reported a decline in physical health and a corresponding increase in overload and depression over the 6-month postdischarge period, a pattern similar to that reported by others, suggesting a cumulative effect of caregiving over time. In addition, caregivers who felt overloaded and reported poor physical health were more likely to report depressive symptoms.

A third finding worth noting is that when we examined the specific outcome of depression, the caregivers in our sample were, on average, in the high range of depression scores reported for other caregiver groups (mean CES-D scores ranging from 6.1 to 16.0).^{2 9 13} Specifically, our sample had higher CES-D scores than those reported for caregivers of patients with spinal cord injury, the elderly, and patients with Alzheimer disease receiving respite care. In addition, we found a greater percentage of caregivers reporting some depressive symptoms at 6 months after discharge (39.4%) than Im et al¹⁴ noted in examining depression of caregivers of patients receiving prolonged mechanical ventilation only 2 months after discharge (33.9%). Our finding could possibly be related to the fact that patients receiving LTV had a high degree of cognitive impairment and poor morbidity and mortality after hospital discharge. While other chronically ill patient groups (spinal cord injury, COPD, Alzheimer disease, cancer) have equally poor outcomes after discharge, there are designated resources both within and outside of the health-care community that can serve as resources for those caregivers. To date, caregivers of patients receiving LTV have not been identified as a group in need of such support.

A fourth finding worth noting is that like Im et al,¹⁴ we found that caregivers of patients who were institutionalized reported higher CES-D scores than did caregivers of patients residing at home. In addition, these caregivers also reported higher degrees of overload than caregivers of patients residing at home. The poorer outcomes and prognosis of those residing in an institution combined with the lack of change in hours of caregiving (4.4 h/d at discharge vs 4.2 h/d at 6 months) over time may contribute to the caregiver’s sense of overload and depression.

There are several limitations to the present study. First, because varying criteria have been used to define a "caregiver," it is difficult to compare studies and to generalize from the results. A second limitation is our attrition rate. Postdischarge mortality accounted for a loss of 26 patients (and thus, their caregivers), and six caregivers were unavailable for follow-up or dropped out. Of the remaining 105 patients, only 77 patients (73%) had the same caregiver for both time points. While we reported data only from caregivers who remained in the study for 6 months, this still remains a limitation in that it limits the sample size and thus the generalizability of study results. A final limitation is the high false-negative rate (36.4 to 40%) previously reported for the CES-D.^{32 33} In essence, in more than a third of the cases, caregivers who are identified as "not depressed" by cutoff scores of the CES-D are depressed by more clinically specific measures. Therefore, we have, most likely, underreported the number of caregivers who are depressed. Using the false-negative rate of 36.4%, it is possible that rather than the identified 28 caregivers (36%) at 6 months with some depressive symptomatology, there are actually 46 caregivers (59.7%) of the sample who are depressed.

In summary, caregivers similar to those in our sample may be at risk for depressive symptomatology, overload, and poor physical health, not only at the patient’s hospital discharge, but at least up to 6 months after discharge. Given the large percentage of caregivers who scored in the "severe" range of the CES-D, these families seem to have needs for support and assistance, not only from family and friends, but from the health-care system as well. However, since patients receiving LTV (and their caregivers) do not fall into any of the other well-studied groups (eg, cancer, Alzheimer disease), they remain unrecognized by the health-care system. Yet, patients receiving LTV are similar to cancer, COPD, and other chronically ill patient populations due to their high mortality, rehospitalization risk, and posthospital need for care. In fact, they may be seen as even more challenging for caregivers because unlike other long-term illnesses, the course of the illness for patients receiving LTV is less understood and predictable and, in addition, there are no identifiable systems in place to provide support to these caregivers. Given the prevalence of depressive symptoms reported by caregivers of patients receiving LTV in this sample, other caregivers in similar conditions might be at risk for depression akin to caregivers of patients with Alzheimer disease and patients with cancer. In view of the persistence of depression in those severely depressed at discharge, it may be reasonable to consider formal assessment of these caregivers to identify those in particular need of referral for mental health services.

Finally, further research needs to be conducted on testing interventions aimed at reducing depression and stress of caregivers, targeting caregivers of patients residing in nursing homes. Of note is that only 32% of these individuals were caregivers for these patients prior to this hospitalization. Thus, they have recently acquired the role of caregiver and could benefit from additional support. No one, to date, has examined depression among these caregivers, and thus we have no data regarding the causes of depression (eg, expectations of families, treatment decisions, support systems, etc). Such information is needed in order to facilitate the identification and treatment of caregivers of patients receiving LTV who are at risk for poor outcomes themselves.

	Acknowledgements

 
The authors thank Helen Foley, Siobhan Martin, and Toni Ross for their roles in the data collection process.

	Footnotes

 
Abbreviations: CES-D = Center for Epidemiological Studies depression scale; ICD-9 = International Classification of Diseases, Ninth Revision; KOMCT = Katzman short orientation-memory-concentration test; LTV = long-term mechanical ventilation; SIP = sickness impact profile

This study was funded by a grant from the National Institute of Nursing Research, Grant No. R01-NR04318.

Received for publication May 13, 2002. Accepted for publication September 16, 2002.

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