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Abstract |
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 Top Abstract MethodsResultsDiscussionReferences |
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• Methods All patients who stayed in the general surgery intensive care unit 7 days or more between July 1, 1996, and June 30, 1997, were enrolled. A total of 128 patients met the entry criteria, and families of surviving patients were interviewed at baseline and 1, 3, 6, and 12 months later. Maximum dysfunction/impact was compared with patients’ functional outcome.
• Results Significant disturbances in the families’ lives occurred throughout the 12 months of this study. Almost 60% of responding families provided a moderate or large amount of caregiving between 1 and 9 months after a prolonged illness, 44.9% had to quit work after 1 month, and more than 36.7% of families had lost savings after 1 year. Some families moved to a less expensive home, delayed educational plans, or delayed medical care for another family member.
• Conclusions An acute surgical illness that results in a prolonged stay in an intensive care unit has a substantial effect on patients’ families that is maximal between 1 and 3 months and parallels the patient’s functional outcome. Systems that provide support to both patients and their families should be emphasized in the hospital and after discharge.
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To receive CE credit for this article, visit the American Association of Critical-Care Nurses’ (AACN) Web site at http://www.aacn.org, click on "Education" and select "Continuing Education," or call AACN’s Fax on Demand at (800) 222-6329 and request item No. 1157.
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The burden of an illness can affect families in many ways. Anecdotal experience suggests that economic and psychosocial burdens associated with a severe illness can be devastating to patients’ families.3 Patients, with diseases that require surgery, and their families expect recovery to occur within a certain brief period. However, in patients with a prolonged critical illness that requires surgery, recovery may take 6 to 12 months.4,5 Many families are unprepared to cope with the impact of this type of prolonged illness and recovery.6
In this study, we asked patients’ families about the frequency of caregiving and alterations in their lifestyle in an effort to assess the impact of the patient’s illness on the family. We also examined the financial burdens to the family and correlated these findings with the patients’ functional outcomes. Rather than establishing objective criteria for whether an item had an impact on or was a burden for the family, we assumed that any yes response from the family indicated that the item in question was a burden from the family’s perspective.
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Methods |
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TopAbstractMethodsResultsDiscussionReferences |
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Demographics, diagnosis, score on the Acute Physiology and Chronic Health Evaluation II (APACHE II) upon admission to the surgical ICU, and Health Service Cost Review Commission costs were collected on the admission for which the stay in the surgical ICU was more than 6 days. The patients’ families were interviewed at admission for baseline data and serially at 1, 3, 6, and 12 months after that to assess the impact of the illness on the family as long as the patient was still alive. Once the patients were determined to be eligible for the study, families were interviewed. Baseline status was defined as the family’s situation as described by the family within the 2 weeks before admission to the ICU. All additional time measures were indexed from the time of ICU admission. These interviews were conducted by a group of interviewers who had been trained to administer both the functional outcome questionnaire and the family impact survey. Interviewers were considered acceptable when there was complete agreement (kappa >0.85) with 5 test interviews. When possible, each family had 1 interviewer, and the total number of interviewers was 4. The family impact survey (Table 1
) includes questions on the financial and caregiving burden.2 This tool was used by the SUPPORT investigators to describe the family caregiving and the financial impact of a severe illness with a high expected mortality.2 The tool has not undergone formal validation with respect to factorial analysis, reliability, or construct or content validity. Patients’ quality of life was measured by using the Sickness Impact Profile (SIP).3,7 The SIP score ranges from 0 to 100, with higher scores indicating greater degrees of dysfunction. The general adult population has an SIP score of about 5, whereas an SIP score of 20 indicates the need for substantial daily care, and a score greater than 30 indicates the need for almost complete care. Hospital billing and insurance information was obtained from the hospital’s billing records and is the same information reported to the Health Service Cost Review Commission.
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The effects of insurance status on baseline demographics, family caregiving, and financial burdens were examined by using univariate methods. To assess factors that were associated with substantial financial burden versus factors that were not, we used 
2 tests to detect trends in cost of hospitalization, age, race, sex, marital status, and insurance status as appropriate. We included any yes responses to the query "Were significant/most of the savings lost because of the patient’s medical illness?" in the logistic regression. The logistic regression model was developed to assess the correlates of loss of family savings after controlling for diagnosis, insurance status, and length of survival. All variables with either an a priori association (age >65 years) or a univariate association of P<.10 were entered into the multivariate model. Additional cutoff values for functional status (SIP score = 10) and hospital charges ($100 000) were considered in the multivariate model when the original values did not reach the required P value of less than .10. Additional logistic regression analyses were performed to assess age as a correlate of adverse economic impact and change in family plans because of the costs of illness.
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Results |
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TopAbstractMethodsResultsDiscussionReferences |
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), and only those families with paired family-functional outcome data are included. The relationships of the interviewed surrogates were as follows: husband (22.7%), wife (35.6%), child (19.8%), sibling (5%), and significant other (6%). Of the surrogates, 52% were women. The mean age of the patients studied was 57 years, and among the survivors at 1 year, 39 patients were men and 17 were women. Baseline demographics and insurance status are reported in Table 3. At 1 year, nonresponders were more likely to have a shorter length of hospital stay (10 vs 32 days) than responders and were more likely than responders to be trauma patients (data not shown).
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shows the percentage of families who provided a moderate or large amount of caregiving assistance to patients during the 12 months of the study. The period when the greatest number of surviving patients’ families provided a moderate or large amount of caregiving assistance was at 3 months. This time interval was when almost all surviving patients were discharged from the hospital and at home.
Table 2 also shows the family impact and financial burden over time for the remaining factors in the questionnaire. Table 4 shows the relationship of the patients’ functional outcome (as measured by the total SIP score) to the reported burdens for patients who survived and patients who did not survive. A strong positive correlation between the patient’s total SIP score and the amount of assistance provided by the family was indicated at most time points. As noted earlier, a higher SIP score is associated with greater dysfunction and logically with the need for greater family assistance. The poor correlation at 1 month most likely occurred because almost all patients were still in the hospital at that time.
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). Insurance status influenced whether the family member would quit work when the patient was admitted to the ICU and also at 1 month (P<.01). Patients with state assistance (Title 5, no insurance, or worker’s compensation) were more likely to have families not working at baseline and at 1 month. Insurance status was not significantly associated with ability to work at 3 months (P = .39), 6 months (P = .72), 9 months (P = .31), or 12 months (P = .91). At 12 months, 23% of families were not working, slightly less than the baseline number. At 12 months, the functional status of patients was better than it had been at baseline. As the SIP score increased (indicating the patient was more disabled), the percentage of families that needed to quit work to care for the patient decreased. Differences in age, sex, APACHE II score, or insurance status of the patients could not be used to explain this finding. This result is somewhat surprising given that patients with higher SIP scores are more likely to require assistance. We were unable to consider the patient’s location (rehabilitation, home support, etc) or other factors in this assessment.
In order to care for the patient, most families had to quit other activities. Such changes were reported by 84.5% of families at 1 month, 63.9% at 3 months, and 50.9% of families at 6 months. Poor functional status (higher total SIP score) and the need for the family to quit other activities were inversely related. This paradoxical finding was similar to that detected for family work status, and cannot be explained by the variables we examined.
Illness
The health of family members was often affected by the stress of a patient’s illness. At baseline, 10.5% of families reported experiencing a stress-related illness, and 7.4% delayed obtaining care for themselves because of the patient’s illness. The greatest period of stress-related family illness occurred in the first 3 months. Throughout the 12-month period, some families (14.5%–21.1%) delayed medical care for themselves (Table 2). Notably at 12 months, 21.5% of family members were still experiencing an illness related to the patient’s illness, with the vast majority either not seeking or delaying medical attention for themselves.
Economic Impact
The economic impact of the cost of the patient’s illness on the family was measured by several questions: (1) Were most of the family’s savings lost?, (2) Was a major source of family income lost?, (3) Did you move to a less expensive home?, and (4) Were educational plans for another family member altered? (Table 1). The financial impact of a patient’s illness was apparent at baseline and extended into 1 year both in savings lost and failure to generate income. Income began to improve at 12 months, the time when patients were recovering and functionally improved. Insurance status did not influence savings lost or income at any time. However, a few families either had to move to a less expensive house or delayed their educational plans because of the cost associated with the patient’s illness. The families that reported the need to move to a less expensive house were those with patients without medical insurance or patients who were part of the state’s Title 5 insurance program. In addition, 6 families filed for bankruptcy; all those patients were younger than 65 years old and lacked private insurance. The relationships between demographics, economic outcome, and functional outcome are shown in Table 5. Although none of the demographic or functional outcome variables measured was associated significantly with loss of family savings at 1 year, the confidence intervals are wide, most likely because of the relatively small sample size.
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); none of the associations were significant, but trends toward significance were seen for patients who were older, who had better functional status at 1 and 12 months, who had a lower degree of illness, and whose hospital charges were less than $100 000. Race, diagnosis, and sex of the patient were not associated with loss of savings.
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Discussion |
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TopAbstractMethodsResultsDiscussionReferences |
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Our findings are supported by those of several other studies in different populations of patients. The SUPPORT investigators found that 34% of patients required considerable help from a family member,2 compared with a maximum of 64.5% of families at 3 months in our study. Interestingly, at 1 year, 34% of families in our study were still directly providing care to the patient, the same proportion as in the SUPPORT study.2 Severe financial burdens have also been reported following coronary bypass surgery and in oncology patients, both adults and children.2,3,5,6,8–10 In addition, previous studies2,6 have shown the effects of serious illness on a family’s health. Our results extend the finding to patients with a prolonged critical illness that requires surgery and indicate the magnitude of the effect over an extended period.
Interestingly, our study did not demonstrate a direct correlation between patients’ outcome as measured by functional status (total SIP score) and many of the family impact variables, such as the need to quit work, the need to quit other activities, or a family member becoming too ill to function. However, the need to provide a moderate or large amount of caregiving was strongly and directly related to functional outcome. These findings are probably complex and interact with the location of the patient (home vs nursing facility), additional resources, or other factors not measured in our study. Nonetheless, in all spheres, the trend for the family to return to baseline as the patient returns to baseline remains true.
Six of the families of surviving patients filed for bankruptcy as a result of income lost, loss of savings, and inability of the patient or family member to return to gainful employment. In each of these families, a catastrophic illness was not expected, and many of the expenses related to care outside the hospital were not covered by insurance. In fact, none of these families had private insurance. Although insurance status was not a predictor of loss of income or savings, hospital costs exceeding $100 000 were predictive of some degree of financial loss at 1 year in the multivariate analyses (P = .11), especially when this factor was combined with an age younger than 65 years and a poorer functional recovery at 1 year. A relationship between low income and loss of savings has been reported before and is not surprising because persons with low income often have less savings.2 Likewise, it is not surprising that families with functionally dependent patients are more likely to experience an economic burden. Although we cannot fully explain the relationship between age, loss of savings, and overall greater financial burden when compared with older patients, older patients qualify for more social services and could have accumulated more savings, a situation that could explain a potential difference between the 2 groups. Alternatively, younger patients may use more healthcare resources, although we have no data to support this explanation.
These data have several limitations. First, the data are subject to survival bias. We did not interview families of patients after the patient died. We did include all data from patients and families up until the time of death. Nonetheless, families of patients who ultimately died may have felt a greater or lesser burden than did families of patients who survived. Second, although our survey has been used by other researchers,2 the survey is subjective and different families from different cultural or economic backgrounds may have answered differently. We did not ask the family the dollar amount of savings loss. Rather, we assumed that whatever the amount was, if it was lost and the family considered it significant, then the amount was not relevant. This assumption may or may not be true. In addition, we do not know with certainty the reason for loss of savings, whether the problem stemmed principally from lost income, lack of insurance, copayments, or out-of-hospital expenses. We also did not collect information on families’ income, educational level, and additional socioeconomic factors, some of which could explain some of our findings.
Our findings support the need for continued assessment and planning, not only for the patient’s illness but also for the impact of that illness on the patient’s family. We especially want to point out that families were often significantly distressed well beyond the time of discharge from an acute care facility when support services from the hospital staff have diminished. Systems should be put into place that enable healthcare providers to recognize and manage the significant burden placed on patients’ families during an often unplanned prolonged critical illness. As patients are transferred more quickly from acute care hospitals to rehabilitation institutions or other subacute care delivery areas, or to home, additional burdens may be placed on the family. The family’s burden and relief of that burden should be considered in the management plan of every critically ill patient with a prolonged illness who requires surgery.
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ACKNOWLEDGMENTS |
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To purchase reprints, contact The InnoVision Group, 101 Columbia, Aliso Viejo, CA 92656. Phone, (800) 809-2273 or (949) 362-2050 (ext 532); fax, (949) 362-2049; e-mail, reprints{at}aacn.org.
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REFERENCES |
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 V. Vandall-Walker, L. Jensen, and K. Oberle Nursing Support for Family Members of Critically Ill Adults Qual Health Res, November 1, 2007; 17(9): 1207 - 1218. [Abstract] [PDF]
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