Journal of Neuroscience Nursing:
Subjective Sleep, Burden, Depression, and General Health Among Caregivers of Veterans Poststroke
Rittman, Maude; Hinojosa, Melanie Sberna; Findley, Kim
Melanie Sberna Hinojosa, PhD, is an assistant professor at Department of Family and Community Medicine Center for Healthy Communities, Medical College of Wisconsin, Milwaukee, WI.
Kim Findley, RN, is a research nurse at North Florida/South Georgia Veterans Health System, Rehabilitation Outcomes Research Center, Gainesville, FL.
Questions or comments about this article may be directed to Maude Rittman, PhD RN, at firstname.lastname@example.org. She is a chief nurse for research and health services researcher at North Florida/South Georgia Veterans Health System, Rehabilitation Outcomes Research Center, Gainesville, FL.
The purposes of this article are to explore and describe subjective sleep experiences of informal caregivers of stroke survivors and to explore the relationships between subjective sleep experiences, caregiver burden, depression, and health to provide a broader portrait of the role that sleep plays in the stroke caregiving experience. A total of 276 caregivers and veterans participated in the study. Results indicate a greater risk of depression (Center for Epidemiologic Studies-Depression Scale) among caregivers who sleep less, have difficulty achieving daytime enthusiasm, use sleep medications, and have poor sleep quality. Caregivers who sleep less have difficulty achieving daytime enthusiasm and are at greater risk of poor health. Greater caregiver burden was associated with less sleep and use of sleep medications. This descriptive analysis demonstrates the important relationship between sleep, depression, health, and burden and can lead to interventions to diagnose and treat sleep difficulties in caregivers.
Sleep plays an important part in everyone's life and is likely to be affected by providing informal care to those who are disabled or who are managing a chronic illness such as stroke. Yet this domain of informal caregiving has received surprisingly little empirical study particularly among stroke caregivers (Wilcox & King, 1999) even though caregivers describe severe fluctuations in sleep patterns over time and report that these changes affected depression (Carter, 2002). Disturbance in sleep is among the most commonly reported problems identified by stroke caregivers (Teel & Press, 1999; Thommessen et al., 2002). Sleep problems have also been found to contribute to institutionalization and, thus, to social and economic costs related to stroke recovery (Pollak & Perlick, 1991). The purposes of this article are to explore and describe subjective sleep of informal caregivers of stroke survivors and to explore the relationships between subjective sleep and caregiver burden, depression, and health to provide a broader portrait of the role that sleep plays in the stroke caregiving experience. The following research questions are answered: What are the subjective sleep experiences of informal caregivers of stroke survivors? What is the relationship between subjective sleep experiences and depression, burden, and general health of caregivers?
Sleep quality is an important dimension of the subjective sleep experience among informal caregivers (Brummett et al., 2006). Earlier studies have found that 90% of caregivers of patients with congestive heart failure (Rausch, 2007) and 63% of caregivers of patients with Alzheimer's disease (Creese, Bedard, Brazil, & Chambers, 2008) report poor quality sleep. In a study of breast cancer caregivers, sleep quality was related to health-related quality of life (HRQoL) (Chang, Tsai, Chang, & Tsao, 2007). Poor sleep quality in caregivers of those with Alzheimer disease was related to nighttime waking, higher levels of depression, and higher levels of caregiver burden (Creese et al., 2008).
Sleep duration, or the amount of sleep that an individual gets each night, is one characteristic of sleep disturbance, and caregivers report shorter sleep durations compared with noncaregivers (McKibbin et al., 2005). Another characteristic of sleep disturbance is nighttime waking. Caregivers often awaken during the night or are unable to sleep through the night because of concern over their care recipient. Several studies indicate that nighttime waking is particularly common among older caregivers (Foley et al., 1995; McKibbin et al., 2005). Some of the major contributors to sleep disturbances are caregiver burden, caregiver depression, and poorer caregiver health (McCurry, Logsdon, Teri, & Vitiello, 2007). Sleep disturbance is also related to higher levels of caregiver strain among multiple sclerosis caregivers (Khan, Pallant, & Brand, 2007). Sleep problems are related to depression among female caregivers (Kochar, Fredman, Stone, & Cauley, 2007), whereas better mental health is related to greater sleep efficiency (Willette-Murphy, Todero, & Yeaworth, 2006).
Caregiver burden is caused by feelings of responsibility, uncertainty about the care needs of the stroke survivor, decreased social interaction, and being the sole provider of care (Scholte op Reimer, de Haan, Rijnders, Limburg, & van den Bos, 1998). Increased caregiver burden is strongly associated with more intense caregiving demands and poorer outcomes for the caregiver, including increased difficulty coping with stress, greater worry about their care recipient, and less social involvement (Hartke & King, 2002). Caregivers who participate in greater dependent care (e.g., toileting, bathing) experienced greater emotional distress and greater caregiver burden (Bakas & Burgener, 2002; van den Heuvel, de Witte, Schure, Sanderman, & Meyboom-de Jong, 2001). Compared with caregivers of individuals with rheumatoid arthritis, stroke caregivers have higher levels of self-reported burden and strain (Blake & Lincoln, 2000; Hartke & King, 2003; Morimoto, Schreiner, & Asano, 2003; Thommessen et al., 2002). Over time, stroke caregivers experience considerable strain and the predictors of strain include the amount of time spent providing care (Bugge, Alexander, & Hagen, 1999). Caregivers tend to experience greater levels of distress when their care recipient has major physical difficulties that often accompany strokes (Bethoux, Calmels, Gautheron, & Minaire, 1996; Hartke & King, 2003; van den Heuvel et al., 2001). Caregivers who reported feeling less distress also had higher levels of self esteem (Bakas, Austin, Okonkwo, Lewis, & Chadwick, 2002; Blake & Lincoln, 2000). Although caregivers who report fewer burdens expressed increased quality of life, caregivers who have higher burden levels experience worse physical health (Wyller et al., 2003). Schulz and Beach (1999) found that caregivers who were experiencing caregiver strain had mortality risks that were 63% higher than noncaregiving controls.
Caregivers consistently report higher rates of depression compared with noncaregivers (Han & Haley, 1999). Depression rates in stroke caregivers have been reported to be as high as 40% to 52%, particularly among spousal caregivers (Anderson, Linto, & Stewart-Wynne, 1995; Schulz, Tompkins, & Rau, 1988; Silliman, Fletcher, Earp, & Wagner, 1986; Stein, Gordon, Hibbard, & Sliwinski, 1992). Depression tends to persist across time and be more pervasive among female caregivers (King et al., 2001; King, Shade-Zeldow, Carlson, Feldman, & Philip, 2002).
General Health Status
In general, HRQoL forms a multidimensional (mental and physical health) outcome, and reduced HRQoL is associated with greater caregiver burden (van Exel, Koopmanschap, Scholte op Reimer, Niessen, & Huijsman, 2005; White, Mayo, Hansley, & Wood-Dauphinee, 2003). Surprisingly, little research has examined HRQoL consequences of stroke caregivers. For many caregivers, however, their new role as caregiver is a 24 hours a day/7 days a week job that causes great emotional and physical distress that can affect physical health (Kerr & Smith, 2001). If stress is prolonged, or insufficiently managed, it may result in a physical illness or disability for the caregiver. Caregiving of stroke survivors has been found to have a negative effect on the general construct of HRQoL of caregivers (Bell & Goss, 2001; Smith, Lawrence, Kerr, Langhorne, & Lees, 2004). Morimoto and colleagues (2003) found that the strongest predictor of declining quality of life for stroke caregivers was a high level of caregiver burden. HRQoL may be improved for caregivers with more family supports (Mant, Carter, Wade, & Winner, 2000), but not all researchers have found that it is closely related to stroke patient characteristics (Smith et al., 2004) or more education about stroke for caregivers (Rodgers et al., 1999). One study examined 136 stroke caregivers at 1 and 6 months poststroke and found a 16% increase in new health conditions at 6 months (King et al., 2001). These new health conditions included musculoskeletal, skin, cardiovascular, infection, and gastrointestinal conditions (King et al., 2001). Additional physical problems reported by stroke caregivers included fatigue and difficulty sleeping (Hartke & King, 2003; Thommessen et al., 2002; Williams, 1984). The conceptual framework in Figure 1 guides the analyses of data to answer the research questions. The framework includes caregiver characteristics, subjective sleep variables, and caregiver outcomes included in this study. As indicated in the framework, this exploratory study described subjective sleep experiences of informal caregivers of stroke survivors and explored the relationship between subjective sleep experiences and depression, burden, and general health of caregivers, controlling for caregiver characteristics.
Caregivers for the sample were drawn from the population of veterans who experienced a new, first-time stroke in fiscal years 2000-2006 in Veterans Integrated Service Networks 8 (Florida, Puerto Rico), 11 (Michigan, Indiana, Illinois), 15 (Kansas, Missouri), and 16 (Texas, Mississippi). We identified veterans and caregivers from Veterans Health Administration (VHA) Inpatient Databases and the Functional Status Outcomes Databases (FSOD) using the high sensitivity and high specificity diagnostic algorithms of Reker, Hamilton, Duncan, Yeh, and Rosen (2001) for identifying veterans in the FSOD who have had a stroke. The high sensitivity and specificity algorithms of Reker et al. were developed using cerebrovascular-related ICD-9 codes for identifying veterans with acute stroke in automated VHA data. To be eligible, caregivers had to meet the following criteria: (1) verify that they provide assistance to the veteran with at least one activity of daily living (ADL) or instrumental ADL (IADL) and (2) consent to participate in a telephone survey. Caregivers were invited to participate if they were caring for a veteran who (1) experienced a first time stroke in fiscal years 2000-2006, meeting the criteria for the high specificity algorithm or the high sensitivity algorithm with a verified stroke diagnosis in their clinical record and (2) lived in the community.
A total of 356 caregivers identified from the databases met the initial criteria and 300 completed the survey. Of the 56 who did not complete the survey, 17 refused, 33 could not be reached by phone, two were deceased, and four were ineligible. The overall response rate for caregivers in the survey was 84.3%. The current analysis is focused on caregiver-veteran dyads; as a result, we have limited the analysis to the 276 caregivers who have matched data for their care recipients (veterans who survived an acute stroke event and were discharged home for rehabilitation).
The definition of caregiver used in this study included two criteria: (1) the stroke survivor must identify the person who provides the most assistance to him or her and (2) verification by the caregiver that the caregiver assists with at least one ADL or IADL. These criteria were validated and used as inclusion criteria. In addition, the caregivers included in these analyses were spousal caregivers living in the same house as the stroke survivor.
Surveys were conducted by expert telephone surveyors contracted through the University of Florida Survey Research Center in collaboration with our investigators; oversight was provided by our research team. All telephone surveys were conducted using Ci3 computer-assisted telephone interview software that incorporates sophisticated programming ability for consistency checking, skip patterns, and ongoing quality assurance. The study was approved by the VHA Subcommittee on Clinical Investigation, the VA Research and Development Committee, and the University of Florida Health Science Center Institutional Review Board.
Subjective sleep experience for stroke caregivers is examined as multiple components including sleep duration, time to fall asleep, importance of sleep, daytime enthusiasm, use of sleep medication, sleep disturbance, and sleep quality. Each of these sleep characteristics is measured as a self-report by the stroke caregiver at the time of the interview using the items from the Pittsburgh Sleep Quality Index (PSQI) (Buysse, Reynolds, Monk, Berman, & Kupfer, 1989). The PSQI is a valid and reliable instrument that assesses these dimensions of sleep during the past month using a rating scale of 0 to 3 and is coded as categorical variables. These subjective sleep items are similar to those used in previous research on sleep. Sleep duration was coded as 1 = 1 to 5 hours, 2 = 6 to 7 hours, 3 = 8 or more hours. Time to fall asleep was coded as 1 = less than 10 minutes, 2 = 10 to 30 minutes, 3 = 30 minutes or more. Caregivers were asked the importance of sleep to the caregiving role, and responses were coded into two categories; 1 = extremely or somewhat important and 2 = not important. Caregivers indicated whether they had difficulty achieving daytime enthusiasm: 1 = not at all, 2 = less than one time per week, 3 = one to two times per week, 4 = three or more times per week. Use of sleep medication among caregivers was coded as follows: 1 = not at all, 2 = less than one time per week, 3 = 1 to 2 times per week, 4 = 3 or more times per week. Caregivers were asked about sleep disturbance and reasons for nighttime waking, and responses were coded as follows: 1 = do not wake at night, 2 = stroke survivor needs assistance, 3 = need to use the bathroom, 4 = worried, 5 = cannot fall asleep, 6 = other reasons. Finally, sleep quality was measured as 1 = very good, 2 = fairly good, 3 = fairly bad, 4 = very bad.
Burden was measured as the magnitude of subjective burden identified or reported by the caregiver. We measured burden by creating a summative scale that represents the number of ADL and IADLs for which caregivers provide assistance to the stroke survivor on a daily basis. ADLs and IADLs items in our survey are consistent with those identified by the National Alliance for Caregiving (2004). Caregivers were asked to respond whether they provided assistance for the following ADLs and IADLs: getting in and out of bed and chairs, getting dressed, getting to and from the toilet, bathing or showering, dealing with incontinence or diapers, eating, walking, grooming, managing finances, handyman chores, housework, transportation, managing medications, answering the telephone, and providing entertainment and leisure activities. The summative scale ranges from 0 to 16 with 0 representing no help with ADLs or IADLs and 16 representing help with every ADL or IADL listed.
We measured depression using a short 10-item version of the Center for Epidemiologic Studies-Depression (CESD-10) scale (Andresen, 1994). The CESD-10 showed good predictive accuracy compared with the full-length 20-item version of the CES-D (k = .97, p < .001) (Andresen, Malmgren, Carter, & Patrick, 1994). The CESD-10 showed expected positive correlations with poorer health status scores (r = 0.37). The measure has been reported as reliable, valid, and sensitive to change over time (Andresen et al., 1994). The CESD-10 has been used in general, patient, and older adult populations including veterans (Kilbourne et al., 2002). This brief measure produces a continuous score that dichotomizes at eight points (equivalent to the full CESD of 20 items versus an alternate level of 10 points) for classifying subjects with clinically relevant symptoms of depression.
HRQoL, measured as general self-reported health (excellent, very good, good, fair, poor), is also important to this brief measure of HRQoL (Hennessy, Moriarty, Zack, Scherr, & Brackbill, 1994; Idler & Benyamini, 1997), and typically is categorized as fair/poor responses versus combined excellent, very good, and good (Andresen, Catlin, Wyrwich, & Jackson-Thompson, 2003; Andresen, Malmstrom, Miller, Miller, & Wolinsky, 2005; Centers for Disease Control and Prevention, 2000).
Demographic information was collected from caregivers in our sample including race, sex, relationship to stroke survivor, living arrangements, outside employment, education, age, and hours per week spent caregiving. Table 1 displays the caregiver demographic characteristics.
Caregivers in our sample were mostly female (89.1%) and most were spouses (70.1%) with 6.2% children of the stroke survivor and 23.7% as other family members. Fifty-nine percent of the sample were non-Hispanic white, 16.4% African American, 20.1% Latino (mostly of Puerto Rican descent), and 4.5% other races. Most caregivers are not employed outside the home (63.6%) and 60% have a high school education or less. Ten percent reported excellent health, 19.7% reported very good health, 31.4% reported good health, 27.4% reported fair health, and 11.3 reported poor health. The average age of caregivers was 60.7 years with a range of 18 to 88 years. Caregivers in the sample reported providing an average of 36 hours per week of care and help with an average of nine ADLs and IADLs. The average score on the CESD-10 Depression scale was 10.35 with a range of 2 to 27 points. Length in caregiving role ranged from eight tenths of a year to 6.7 years with a mean of 2.7 years.
Subjective Sleep Experience
Table 2 displays the coding scheme for each of the categorical subjective sleep variables and a description of the sample.
Almost half of caregivers reported getting 6 to 7 hours of sleep per night with 20.5% getting 1 to 5 hours and 31.2% getting 8 or more hours. Forty-five percent of caregivers reported taking between 10 and 30 minutes to fall asleep at night, 28.1% less than 10 minutes, and 26.5% more than 30 minutes. A vast majority (87.2%) of stroke caregivers reported that sleep is extremely or somewhat important to the caregiving role, with only 12.8% indicating that it was unimportant. Almost two thirds had trouble with daytime enthusiasm, 9.5% reported lacking daytime enthusiasm less than once a week, 29.5% lacked enthusiasm one to two times per week, and 25.0% lacked enthusiasm three or more times per week. Most caregivers did not use sleep medications (69.9%), 6.3% used them less than once a week, 8.5% used them one to two times per week, and 15.4% used sleep medication three or more times per week. When asked about sleep disturbance, almost 80% experienced nighttime waking and 18.8% of caregivers reported no nighttime waking, 15.2% reported waking to assist the care recipient, 18.4% woke to use the bathroom, 18.8% woke because of worry, 6.3% were awake because they could not fall asleep within 30 minutes, and 22.7% reported other reasons. Most caregivers reported very good (30.3%) or fairly good (54%) sleep quality, with 9.5% reporting fairly bad and 6.2% reporting very bad sleep quality.
To provide a complete picture of how depression, burden, and self-rated health affect sleep, we first computed a set of one-way analyses of variance (ANOVAs) to examine these relationships. Table 3 displays the relationship between subjective sleep experiences and depression. The means in the columns represent the mean score on the CESD-10 scale within each of the sleep categories.
Depression scores are higher for caregivers getting 1 to 5 hours of sleep (13.04) compared with those getting 6 to 7 hours (9.53) and those getting 8 or more hours (9.62) (F = 10.73, p < .01). Caregivers who took 30 minutes or more to fall asleep had higher depression scores (12.53) compared with those who took 10 minutes or less to fall asleep (9.32) (F = 8.47, p < .01). Caregivers were asked how often they had difficulty achieving daytime enthusiasm; those who reported no trouble at all had a significantly lower depression score (8.16) compared with those reporting difficulty one to two times per week (10.98) and those reporting difficulty three or more times per week (13.41) (F = 16.46, p < .01). Depression scores differed for those using sleep medications three or more times per week (13.69) compared with those who did not use sleep medications (9.45) (F = 9.63, p < .01). Caregivers who were awake at night because of difficulty falling asleep had higher depression scores (13.30) compared with those who did not wake up during the night (8.89) (F = 4.26, p < .01). Caregivers who reported very good sleep quality had lower depression scores (8.51) compared with those who reported fairly good sleep quality (10.30), those who reported fairly bad sleep quality (13.21), and those with very bad sleep quality (15.65) (F = 13.72, p < .01).
Table 4 displays the results of a one-way ANOVA test for the difference in proportion of individuals who reported that they were in good health compared with those who reported poor health. The means in the columns refer to the proportion of stroke caregivers who reported poor health. The number of hours of sleep that caregivers get each night is associated with health. Fewer caregivers reported poor health if getting 8 hours or more of sleep each night (31%) compared with those getting 1 to 5 hours of sleep 52% (F = 2.96, p < .05). A smaller proportion of caregivers who reported taking less than 10 minutes to fall asleep were also in poor health (29%) compared with those who reported taking 10 to 30 minutes to fall asleep (34%) and those taking more than 30 minutes to fall asleep (52%) (F = 4.75, p < .01). Caregivers who reported having difficulty achieving daytime enthusiasm less than once a week reported poor health at lower rates (16%) compared with those who reported difficulty three or more times per week (48%) (F = 4.81, p < .01). A larger proportion of caregivers who reported using sleep medication three or more times per week were in poor health (64%) compared with those who reported using sleep medication less than once a week (24%) and those who reported not using sleep medication (33%) (F = 5.90, p < .01). Fewer caregivers in poor health reported very good quality of sleep (27%) compared with those reporting fairly bad (50%) and very bad (76%) sleep quality (F = 5.90, p < .01).
A one-way ANOVA was done on the level of burden and subjective sleep experiences; Table 5 displays the results. The means in the column represent the average number of ADL and IADLs that caregivers provide assistance with at home. Caregiver burden was higher for caregivers who wake at night to care for the stroke survivor (12.08) compared with those who do not wake (7.67) and those who wake for other reasons (8.49) (F = 4.08, p < .01).
To examine the relationship between sleep and depression adjusted for other caregiver characteristics, we used multivariate logistic regression. Each sleep variable was regressed on depression with a CESD score of more than 10 representing depression and CESD score of less than 10 representing no depression. Each analysis included caregiver gender, race, educational level, relationship, age, stroke survivor comorbidities, length of time in the caregiving role, and work status. Table 6 displays the results of the regression analyses. The columns represent the log odds of caregiver depression and 95% confidence interval (CI). Significant effects are marked by an asterisk. This analysis demonstrates that there is an increased risk of depression for caregivers who sleep 1 to 5 hours per night (odds ratio [OR] = 2.76; 95% CI: 1.2-5.99) compared with those who sleep 8 or more hours per night. Caregivers who have no trouble achieving daytime enthusiasm have a lower risk of depression (OR = 0.10; 95% CI: 0.04-0.22) compared with those who have difficulty with enthusiasm three or more times per week. Similarly, caregivers who have difficulty less than once a week are at increased risk of depression (OR = 0.14; 95% CI: 0.05-0.43) compared with those who have difficulty three or more times per week. Caregivers who do not use sleep medications are less likely to be depressed compared with those who use sleep medications three or more times per week.
Table 7 displays the log odds of reporting poor health within subjective sleep categories adjusted for caregiver demographic characteristics. Caregivers who get between 1 and 5 hours of sleep each night are 2.4 times more likely to report poor health (OR = 2.41; 95% CI: 1.09-5.32) compared with caregivers getting 8 or more hours of sleep each night. Caregivers reporting difficulty achieving daytime enthusiasm less than once a week (OR = 0.18; 95% CI: 0.05-0.63) were more likely to be in poor health compared with those reporting difficulty three or more times per week. Those reporting very good sleep quality were less likely to be in poor health (OR = 0.09; 95% CI: 0.02-0.36) compared with those reporting very bad sleep quality.
Table 8 displays the results of a multivariate, linear regression analysis with caregiver burden as the outcome. The columns report the unstandardized β coefficients, standard errors, and t scores. Each model controls for gender, race, educational level, relationship, age, and work status. Caregivers who sleep 1 to 5 hours per night provide assistance for 1.92 (p < .05) more ADLs and IADLs compared with caregivers who sleep 8 or more hours per night. Caregivers who do not use sleep medication β = -1.85, p < .05) and those who use it one to two times per week (β = -2.26, p < .01) have lower burden compared with those who use sleep medication three or more times per week.
The subjective sleep experience of stroke caregivers is related to their depression, health status, and level of burden. This is among the first studies to examine this important relationship and to describe in detail the subjective sleep experiences of stroke caregivers. Caregiver sleep problems included inadequate sleep at night, difficulty with daytime enthusiasm, poor sleep quality, and use of sleep medication. To help caregivers of stroke survivors, clinicians need to identify sleep problems in caregivers early and provide education to caregivers about potential sleep problems.
One consistent finding is that caregivers who sleep 5 hours per night reported more symptoms of depression, poorer health, and a greater caregiver burden compared with those who sleep 8 or more hours each night. Additionally, use of sleep medication three or more times per week was related to greater depression, poor health, and greater burden.
Future studies on caregiver outcomes need to include assessment of sleep as an important part of the picture of stroke caregiver outcomes. Intervention studies are needed to evaluate the impact of strategies to improve caregiver sleep and related outcomes. Strategies to improve sleep without the use of medications need to be developed and tested.
Findings indicate that caregivers who sleep 5 hours or less each night, who wake at night, who use sleep medications, and who have difficulty achieving daytime enthusiasm due to lack of sleep have an increased risk of depression. Clinicians need to understand the significance of these symptoms and evaluate and treat depression among stroke caregivers. Once sleep problems are identified, nurses and other clinicians can provide education on sleep hygiene practices and assist caregivers to identify strategies to improve their sleep. If sleep problems persist or are related to symptoms of sleep apnea, caregiver referrals for sleep studies may be needed. Findings further support the importance of sleep for maintaining caregiver health. These findings may give clinicians a new perspective on ways to provide assistance to caregivers who are burdened with the care of stroke survivors in the home environment.
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