Author Affiliations: Feinberg School of Medicine, Northwestern University, Chicago, Ill (Drs Witt, Gibbs, and McCarthy); Veterans Affairs Cooperative Studies Program Coordinating Center, Hines, Ill (Mss Wang and Giobbie-Hurder); Mather LifeWays Institute on Aging, Evanston, Ill (Dr Edelman); and Veterans Affairs Medical Center and the Department of Surgery, University of Utah, Salt Lake City (Dr Neumayer).
Inguinal hernia significantly affects family and other informal caregivers, and hernia repair will significantly reduce caregiver burden.
We analyzed data from a Veterans Affairs Cooperative Study with mixed models to compare the level of burden among caregivers of inguinal hernia patients from preoperative measurement to measurement at 2 weeks and at 3 months postoperatively.
Most caregivers were wives (73%) and lived with the patients (88%). There were no differences in caregiver burden by type of treatment. The time caregivers spent assisting patients increased significantly over the 2 weeks following treatment (odds ratio, 4.34). In contrast, 3 months after treatment, caregivers reported spending less time on additional chores than before treatment (odds ratio, 0.12). Furthermore, caregivers' concerns about patients' abilities to perform normal household activities decreased by 2 weeks posttreatment (odds ratio, 0.52). Wives/girlfriends and caregivers of patients with complications were more likely to report these concerns.
Inguinal hernia and its repair significantly affect informal caregivers. Caregivers assumed the heaviest time and effort-related burden 2 weeks following hernia repair and expended additional effort if the patient experienced complications. Interventions should reflect when burden is greatest and target the subgroups of caregivers who most need support.
Inguinal hernia is a common condition, especially in men, appearing in all age groups with peak incidence in the newborn, young adult, and elderly populations.1 A National Health Survey on Hernia, conducted in 1960, determined that hernias occur at a rate of 15 per 1000 population.2 Surgical repair of inguinal hernias represents a large component of health care effort with approximately 700 000 herniorrhaphies performed each year in the United States.3
Hernias and hernia repair affect the quality of life of the patient4,5 and may have a substantial impact on informal caregivers, especially considering that many of these patients are discharged the same day as their surgery and much of their recovery is managed at home. However, no previous work has examined the impact of this condition and the type of surgical repair on caregivers. In this article, we use data from a Veterans Affairs (VA) Cooperative Study to examine the impact of hernia and hernia repair on caregiver burden across time from preoperative measurement to measurement at 2 weeks and at 3 months postoperatively.
Data are from a VA randomized hernia trial in which 1983 consenting men with inguinal hernias at 14 VA medical centers received either open mesh repair (Lichtenstein)6,7 or laparoscopic repair with mesh. The design, conduct, and primary results of the VA hernia trial are reported elsewhere.8,9
Informal caregivers were defined as unpaid persons (family members or close friends) who met the needs of, provided or arranged for care of, or provided support to the patients. Fifty-four percent of patients (n = 1065) identified the presence of an informal caregiver at baseline. The study sample for this article was 79% of identified caregivers (n = 837) who responded to the baseline questionnaire and to at least 1 of the follow-up questionnaires at 2 weeks and 3 months after the patient's course of treatment. The protocol and consent forms were approved by the Hines VA Cooperative Studies Program human rights committee and by each site's institutional review board.
Caregivers completed a self-administered questionnaire at baseline and at 2 weeks and 3 months after the patient's surgery. The baseline questionnaire was filled out by the caregiver either at the time of patient enrollment into the study (80% of our study sample) or shortly thereafter in a mailed survey. This instrument was developed for the VA hernia trial and was pretested in a sample of hernia patient informal caregivers.
In separate questions, caregivers were asked how concerned they had been in the last few days about the patient's ability to perform 4 types of activities: normal home, work, social, and recreational activities. Response alternatives included not at all, a little bit, moderately, quite a bit, or extremely concerned. A trichotomous variable was used in the analyses comparing caregivers with no concern with caregivers with “a little bit or moderately” or “quite a bit or extremely.”
Caregivers were provided with a list of 10 common chores and asked how many hours they spent during the past week doing additional chores around the home because of the patient's condition. Hours were classified into 3 categories for the analysis: 0, 1 to 5, and more than 5 hours. Caregivers were asked how much effort it took to do these chores, and their responses were trichotomized for analysis: “no effort or a little bit,” “moderate amount or quite a bit,” and “a great deal.”
Patients were assigned to either open or laparoscopic repair. The patient's hernia was categorized as primary or recurrent and as unilateral or bilateral. Complications were assessed intraoperatively and at specified intervals postoperatively. Patient health status was measured by the American Society of Anesthesiologists (ASA) presurgical classification system. Class 1 denotes healthy status; class 2, mild systemic disease; and class 3, severe systemic disease. In the statistical models, patients with mild and severe systemic diseases (ASA classes 2 and 3) were compared with patients in good health (ASA class 1).
The caregiver relationship to the patient was recorded as wife, girlfriend, other family member, friend, or other. For statistical modeling, these categories were collapsed to wife/girlfriend, family member, and other. Caregivers were also classified as residing with the patients or not.
The statistical analyses were performed based on the intention-to-treat principle. Univariate comparisons of treatment by caregiver burden across study periods were conducted using χ2 tests for trichotomous outcomes. Baseline category logit models with random effects were used to model the trichotomous outcomes over time. The outcome response of “no concern” or “no effort” was chosen as the baseline category for these models.
Some caregivers were missing responses from both of the posttreatment interviews. A baseline comparison between these caregivers to those with at least 1 posttreatment interview revealed significant differences by patient and caregiver sociodemographic characteristics. Excluding the caregivers with no follow-up response from analyses could introduce bias because missing data could be due to patient treatment status and caregiver burden. To adjust for potential selection bias, a logistic regression model was used to model the probability of missing caregiver data at both posttreatment interviews10- 12 for all the identified caregivers (n = 1086); the predicted probability was taken as the propensity score with higher propensity scores indicating a higher probability of missing data. The dependent variable in this model was “complete caregiver data posttreatment” (complete data with baseline information and at least 1 posttreatment interview) vs missing data either at baseline or both posttreatment interviews. Covariates included in the model were variables thought to be associated with the likelihood of missing data: caregiver relationship and residence, caregiver concern about 4 types of normal activities, hours and effort spent doing additional chores, and baseline stratification variables. A 0.1-unit increment in propensity score was used in calculating the odds ratios of the outcomes.
Potential explanatory variables considered in all models were treatment, time, treatment × time interaction, propensity scores of missing data/interviews, hernia type (primary/recurrent), hernia side (unilateral/bilateral), presence of complications (any complication/none), ASA class (class 1, 2, or 3), caregiver relationship (wife or girlfriend/family/other), and residence (lives with patient/does not live with patient). The time variable was considered a covariate in all of the models to determine changes in caregiver outcomes over the study period. Time was put in the model using 2 dummy variables to represent 3 levels: baseline, 2 weeks, and 3 months. The 2-way interaction term of treatment and time was examined to see whether treatment effect changed across time.
Because 6% of patients did not receive the assigned treatment, full models were also run with an “as treated” rather than the intent-to-treat variable. The as-treated variable was not significant in any of the models.
All statistical tests were 2-sided; the statistical significance level was set at P = .05. All analyses were conducted using PROC NLMIXED from SAS version 8.0 (SAS Institute Inc, Cary, NC).
The first set of analyses describes the relationship of the caregiver to the patient and whether or not they resided together. The caregiver was most often the patient's wife (73%), and 88% of caregivers reported that they lived with the patients (Table 1).
Analyses of differences in caregiver burden by treatment across the study period revealed that the average number of hours spent by caregivers doing additional chores because of patient condition did not vary by the type of hernia repair at any point during the study period (Table 2). Across the study period, there were no significant differences by treatment group in caregiver concern about the patients' ability to perform normal work, social, or recreational activities. Caregivers' concerns about the patients' activities around the home were no different by treatment group at baseline and 2 weeks posttreatment. Three months after treatment, caregivers of patients who had the open repair were more likely to be a little bit or moderately concerned about the patients' abilities to perform activities around the home as compared with caregivers of patients who received laparoscopic surgery (33.3% vs 24.3%, respectively, P<.05). Caregivers of both laparoscopic and open repair patients increased their time assisting the patients during the 2 weeks after the operation, but this time decreased sharply from 2 weeks to 3 months after the operation (Figure).
Average hours caregivers spent doing additional chores around the home because of patient condition at study observation periods.
Four separate models were estimated to examine caregiver concerns about the patient's ability to perform activities around the home, at work, in social settings, and during recreation (Table 3). Results from these models show that caregiver concerns were not related to patient treatment status, time × treatment interaction, hernia type or side, or caregiver living situation for any of the activities. Greater propensity for missing caregiver data from 1 of the posttreatment interviews was significantly associated with nearly all of the outcomes of interest with the exception of concern about the patient's ability to perform normal activities around the home. Caregivers' concern about the patients' abilities to perform all activities significantly decreased across the study period. For example, concerns among caregivers about patients' abilities to perform normal household activities were lower 2 weeks following treatment than before treatment (odds ratio, 0.52; comparing quite a bit or extreme to not at all). Moreover, we found that these concerns were further alleviated 3 months following treatment (odds ratio, 0.04; quite a bit or extreme vs not at all) compared with baseline.
Wives and girlfriends were significantly more likely than other types of caregivers to report concern about a patient's ability to engage in work, social, or recreational activities. Family members were about 3 times more likely to be “extremely concerned” about a patient's ability to engage in recreational activities when compared with other types of caregivers. Caregivers of patients who experienced complications were more likely to express concern about all types of patient activities than caregivers of patients without complications. Patient ASA class at baseline was a strong predictor of caregiver concern about home and social activities. For example, caregivers of patients with severe systemic disease were 2.7 times as likely to report being moderately concerned and 1.7 times as likely to report being extremely concerned about home activities compared with caregivers of healthy patients. A similar pattern was observed for social activities. Although not as strong a predictor, ASA class was also related to increased caregiver concern about recreational activities.
Two separate models were estimated to determine the key factors related to increased caregiver time and effort in performing additional chores (Table 4). Findings from these models show that caregiver effort was not related to patient treatment status, time × treatment interaction, hernia type or side, or ASA classification. Greater propensity for missing caregiver data from 1 of the posttreatment interviews was significantly associated with increased caregiver effort with the exception of caregivers who reported 1 to 5 hours spent in performing additional chores as compared with caregivers who reported no hours.
When the time and effort caregivers spent in performing additional chores were analyzed, we found that caregivers were significantly more likely to spend additional hours at 2 weeks following surgery as compared with baseline (odds ratios, 2.90 and 4.26 for 1 to 5 hours or more than 5 hours on additional chores, respectively). However, 3 months after surgery, the odds that caregivers would spend 1 to 5 or more than 5 hours on additional chores rather than 0 hours significantly decreased (odds ratio, 0.25 and 0.12 of the estimated odds at baseline, respectively). Family members were 4.34 times more likely to spend more than 5 hours on additional chores rather than 0 compared with other caregivers; however, the amount of time wives/girlfriends spent on chores did not significantly differ from other caregivers. Caregivers living with the patient were more likely to spend additional hours with chores as compared with caregivers living outside of the home.
Two weeks following the hernia repair, the odds of caregivers reporting a moderate and great deal of effort increased 2-fold as compared with the odds of effort at baseline. However, at 3 months postoperation, caregiver effort had substantially decreased compared with baseline. Family members were more likely to report that either a moderate or a great deal of effort was required doing additional chores compared with other caregivers. There was no difference between wives/girlfriends and nonfamily caregivers in the amount of effort reported. Caregivers living with the patient were 2.9 times more likely to spend a great deal of effort on additional chores compared with their nonresidence counterparts. Caregivers of patients who experienced complications were 2.2 and 1.6 times more likely to report a moderate and a great deal of effort in performing additional chores, respectively.
To the best of our knowledge, this is the first study to document informal caregiver burden associated with caring for patients with inguinal hernia before and following hernia repair. Our study contributes 3 important new findings in understanding the extent to which this condition and its treatment affects caregivers' concerns, time, and effort after the patient returns home.
First, our study found that both caregiver concern about patient activities and the time and effort spent helping the patient diminished over the study period and did not differ by type of operation. However, the pattern of change for these 2 aspects of caregiver burden was different. Multivariate analysis indicated that concern about patient activities declined from baseline to 2 weeks after surgery and then declined more sharply from baseline to 3 months. On the other hand, caregiver time and effort in helping the patient with additional chores increased during the 2-week postoperative recovery period before decreasing significantly by 3 months. Although caregiver effort understandably increases during the recovery period, concern may already be lessened because the caregiver anticipates that the patient's performance will improve after recovery from surgery.
Second, we found that wives/girlfriends were more likely to be concerned about most activities even after taking time and other factors into account. Moreover, family members and other caregivers living with the patient reported more hours and effort in completing additional chores. These findings indicate that initial days or weeks after surgery may be a critical point at which caregivers need support in providing home-based care and that family caregivers in particular may need to be targeted for interventions because they have a greater burden.
Third, caregivers of patients with operative complications were significantly more likely to be concerned about the patients' abilities to participate in certain activities and reported having to expend more effort in completing household chores. In better preparing caregivers of high-risk patients, the health care team may want to consider providing comprehensive information about the possible patient recovery trajectories and the potential impact patient outcomes can have on caregiver burden.13 A recent qualitative study found that caregivers of recently hospitalized patients wanted to be more informed and involved in the discharge planning process.14 Such an approach may alleviate postoperative concerns among these caregivers and improve the patient recovery process. A predischarge informational intervention for male spouses of coronary artery bypass graft patients showed that patients whose spouses received the intervention were less likely to experience problems requiring additional health care compared with patients whose spouses received standard discharge information.15
The literature supports the involvement of clinical staff in supporting patients and caregivers with postoperative home-based care. Such interventions can prepare patients for recovery at home,16 reduce anxiety among patients and partners,17 and improve the family's quality of life.18
Another strength of this study is our effective use of a propensity score to adjust for missing data. Certain individual and environmental factors in the data collection process often increase the chance of missing data. The respondent's poor health status19,20 or mental health21 and sociodemographic characteristics such as poverty22 can all lead to missing data. These results support the use of the propensity scores in the regression models, and exclusion of these caregiver-patient dyads from the analyses could have biased results by introducing error due to incomplete coverage of the target population.
This study has several limitations. We were not able to examine caregiver coping strategies over the study period. There may have been critical adaptive responses among caregivers, thus influencing their level of concern about the hernia patient. In addition, we did not have information about the level or quality of caregiver-patient communication and the potential impact this could have on caregiver burden. A recent cross-sectional cohort study of caregivers of patients with a serious illness found that poor communication between patients and informal caregivers was associated with greater caregiver burden.23
A paucity of research exists on caregiver burden in the context of short-term care and recovery, and this study adds to the dearth of this literature in broadening our understanding of the caregiving experience following patient surgery and into recovery, specifically for the case of hernia. Inguinal hernia and its repair significantly affect the informal caregiver, and our findings suggest that health care providers may want to target interventions for the immediate postoperative recovery period with a particular focus on spousal caregivers of patients with complications and poorer preoperative health status.
Future studies should consider the impact of caregiver burden on the hernia patient recovery process. Other studies have suggested that caregiver physical and emotional support can have a salutary effect on patient recovery from surgery.24,25
Correspondence: Leigh Neumayer, MD, Veterans Affairs Medical Center, VAMC-112, 500 Foothill Dr, Salt Lake City, UT 84148 (email@example.com).
Accepted for Publication: July 19, 2005.
Funding/Support: This research was supported by the Cooperative Studies Program of the Department of Veterans Affairs Office of Research and Development.
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