Journal of Gerontological Nursing

Feature Article 

Overburdened and Underprepared: Medical/Nursing Task Performance Among Informal Caregivers in the United States

Victoria F. Keeton, MS, RN, CPNP-PC, CNS; Jonathan Trask, MS, RN, CCRN; Robin Whitney, PhD, RN; Janice F. Bell, PhD, MPH, MN

Abstract

Informal caregivers are increasingly performing medical/nursing tasks in the home for adult care recipients, often without adequate support. In the current study, using data from the Caregiving in the U.S. 2015 survey (N = 1,248), we examined associations between performing medical/nursing tasks and caregiver well-being (e.g., physical strain, emotional stress, burden of care). Overall, 58% of caregivers performed medical/nursing tasks. Compared to those who did not, those performing tasks had higher risk of emotional stress, physical strain, and high burden of care. Among task performers, difficulty performing tasks was associated with higher risk of all outcomes; having no choice in caregiving was independently associated with higher risk of emotional stress and physical strain. Caregivers performing medical/nursing tasks, particularly those who find tasks difficult, are at risk for adverse outcomes. New clinical approaches are needed to ensure meaningful conversations about caregivers' willingness, availability, and ability to perform medical/nursing tasks and to provide support for this part of the caregiving role. [Journal of Gerontological Nursing, 46(9), 25–35.]

Abstract

Informal caregivers are increasingly performing medical/nursing tasks in the home for adult care recipients, often without adequate support. In the current study, using data from the Caregiving in the U.S. 2015 survey (N = 1,248), we examined associations between performing medical/nursing tasks and caregiver well-being (e.g., physical strain, emotional stress, burden of care). Overall, 58% of caregivers performed medical/nursing tasks. Compared to those who did not, those performing tasks had higher risk of emotional stress, physical strain, and high burden of care. Among task performers, difficulty performing tasks was associated with higher risk of all outcomes; having no choice in caregiving was independently associated with higher risk of emotional stress and physical strain. Caregivers performing medical/nursing tasks, particularly those who find tasks difficult, are at risk for adverse outcomes. New clinical approaches are needed to ensure meaningful conversations about caregivers' willingness, availability, and ability to perform medical/nursing tasks and to provide support for this part of the caregiving role. [Journal of Gerontological Nursing, 46(9), 25–35.]

Approximately 40 million individuals in the United States provide unpaid, informal care or assistance to adults who are in some degree incapacitated and require help (Family Caregiver Alliance, 2018; National Alliance for Caregiving [NAC], 2015). This number is likely to increase as the population ages, with the number of individuals aged ≥85 years projected to increase from 6 million to 20 million by 2060 (Mather et al., 2015). The physical strain, emotional distress, and financial burden associated with caregiving contribute to adverse health outcomes among caregivers, including stress, depression, and poor health status (Allen et al., 2017; NAC, 2015; Wolff et al., 2016). For approximately 60% of U.S. caregivers who are employed at least part time (NAC, 2015), caregiver burden negatively impacts job performance and employment status (Farre et al., 2018; Hopps et al., 2017), potentially increasing health care and employment costs (Farre et al., 2018; Hopps et al., 2017) and extending the burden to society as a whole.

Recent trends toward increased prevalence of multimorbidity (Ward & Schiller, 2013) and earlier hospital discharges (Bueno et al., 2010) have shifted care into the community for individuals with complex care needs. Concomitantly, the role of family caregivers has expanded to include increasingly complex medical and nursing care responsibilities (Gillespie et al., 2014; Reinhard et al., 2012). Care tasks provided by caregivers in the home can range from assistance with simple activities of daily living (ADL; e.g., dressing, bathing, transportation), to coordination of medical care and appointments and performance of medical/nursing tasks (e.g., maintenance of feeding tubes or urinary catheters, administration of multiple medications, toileting) (Wolff & Spillman, 2014). The high cost of professional home health service providers to perform medical/nursing tasks is prohibitive for many families, particularly in economically disadvantaged populations (Chari et al., 2015). Medical/nursing tasks are therefore often performed by informal caregivers, usually family members with varying levels of knowledge and/or preparation to execute these tasks safely and competently (Reinhard et al., 2012). Nationally, 57% of U.S. caregivers report assisting with medical/nursing tasks, and 42% without having had any preparation (NAC, 2015). Among caregivers of adults with medical needs, 44% provided an estimated 28 hours per week of assistance with medical/nursing tasks (Wolff et al., 2016), potentially explaining high rates of employed caregivers reporting the need to take leaves of absence from work (Henriksson & Arestedt, 2013; Wolff & Spillman, 2014; Wolff et al., 2016).

In response, many institutions have implemented comprehensive transitional care programs aimed at better preparing caregivers for their roles during discharge planning (Fischer-Cartlidge et al., 2016; Forbat et al., 2018; Havyer et al., 2017; Hendrix et al., 2016; Hendrix et al., 2011; Krieger et al., 2017; Naylor et al., 2011; Toye et al., 2016). Such programs can significantly reduce re-admission rates for older adults who have been hospitalized, resulting in lower health care costs and improved health status (Naylor et al., 2011; Wagle et al., 2018). However, most studies in this area have been too small or otherwise unable to demonstrate long-term benefit to the well-being of caregivers (Fischer-Cartlidge et al., 2016; Forbat et al., 2018; Hendrix et al., 2016; Holm et al., 2016).

More robust research is needed to inform the development of caregiver training programs and policy interventions with sustainable positive impact on caregiver self-efficacy and well-being. The design of such programs requires a better understanding of the population of caregivers who perform medical/nursing tasks. The current study addresses these gaps, drawing from a large, nationally representative sample of informal caregivers to (a) examine associations between medical/nursing task performance and caregiver well-being, and (b) identify sociodemographic and caregiving factors associated with well-being among those performing medical/nursing tasks.

Method

Study Population

In the current study, we examined data from the Caregiving in the U.S. 2015 survey, a nationally representative survey of informal caregivers administered via the internet between September and November 2014, co-sponsored by the NAC and the American Association of Retired People (AARP) Public Policy Institute. Based on the national, probability-based, online Growth from Knowledge's KnowledgePanel®, participants were chosen by random selection of telephone numbers and addresses, and people in select households were invited to participate in the online survey. Inclusion criteria were (a) age >18 years, and (b) providing unpaid care for an adult age >18 years. A total of 7,660 online screening interviews were conducted; those who were not caregivers, caregivers of a child only, or caregivers who did not complete the full interview were excluded, for a final sample of 1,248 respondents.

Ethics Approval

The Committee for the Protection of Human Subjects at the University of California, Davis, deemed the current study exempt from full review based on its use of publicly available data.

Outcome Variables

In analyses of caregiver well-being, three outcomes were examined: (1) emotional stress, rated on a 5-point scale, with responses dichotomized as not stressful (1 = not at all stressful, coded as the reference group) vs. stressful (2 to 5 = very stressful); (2) physical strain, rated on a 5-point scale, with responses dichotomized as no strain (1 = not a strain at all, coded as the reference group) vs. strain (2 to 5 = very much a strain); and (3) high burden of care based on an index score developed in the original survey and calculated from response to the question, “How many hours do/did you spend in an average week, helping [care recipient]?” and the number of ADL or instrumental ADL (IADL) performed by the caregiver (NAC, 2015). Responses on a 3-point scale were dichotomized as low burden (reference) based on a score of 1 vs. high burden, based on a score of 2 to 3 (medium burden and high burden, respectively).

Independent Variables

The primary independent variable, medical/nursing task performance (coded yes, no = reference), was identified through affirmative responses to any in a series of questions about giving medicines, such as pills, eye drops, or injections; preparing food for special diets; tube feedings; wound care; monitoring things, such as blood pressure or blood sugar; helping with incontinence; or operating equipment, such as hospital beds, wheelchairs, oxygen tanks, nebulizers, or suctioning tubes (NAC, 2015). A second independent variable, having no choice in caregiving, was measured from responses of no to the question, “Do you feel you had a choice in taking on care for [care recipient]?” (yes = reference).

In a sub-analysis among medical/nursing task performers, in addition to “having no choice,” as specified above, two other independent variables were examined: (1) any reported difficulty of medical/nursing task performance, based on the question, “How difficult is/was it for you to do the medical/nursing tasks that are/were required to help [care recipient],” dichotomized as not difficult (1 = not at all difficult) vs. difficult (2 to 5 = very difficult); and (2) report of preparation for performing medical/nursing tasks (coded yes = reference vs. no/unsure), based on responses to the question, “Did anyone prepare you to do medical/nursing tasks?”

Covariates

In all models, sociodemographic covariates included age (18 to 49 years = reference, 50 to 64 years, ≥65 years), sex (male = reference, female), race/ethnicity (White/non-Hispanic = reference, Black/non-Hispanic, Hispanic, other/non-Hispanic), and education (less than high school = reference, high school or general educational development [GED], some college or technical school, college/graduate degree). Caregiving covariates included relationship with the care recipient (friend, neighbor, non-relative = reference; spouse or partner; child or parent; other relative), length of time providing care (<1 year = reference, 1 to 4 years, ≥5 years) and caregiver health status (good/fair/poor = reference, excellent/very good).

Care recipient variables included age >50 years (no = reference, yes) and having a long-term condition (no = reference, yes). Six mutually exclusive indicators of the care recipient's primary diagnosis category were also included: other condition = reference (includes developmental and psychiatric conditions, brain damage, substance use, vision/hearing/speech conditions, aging, and don't know/other); Alzheimer's disease/dementia; cancer; other chronic illness (e.g., asthma, hypertension, diabetes, epilepsy, heart disease, lung disease); mobility impairment/musculoskeletal condition (e.g., arthritis, back problems, broken bones, feeble/unsteady, osteoporosis, paraplegia, Parkinson's, stroke, cerebral palsy); and surgery/wounds. In the sub-analyses restricted to medical/nursing task performers, a binary measure of having received paid help in providing care (no = reference, yes) was also included.

Statistical Analyses

All statistical analyses were conducted using Stata version 15. All study variables were described and compared by performance of medical/nursing tasks using chi-square tests. Logistic regression was used to model caregiver emotional stress, physical strain, and high level of burden as functions of medical/nursing task performance, having no choice in caregiving, and the sociodemographic, caregiving, and health covariates. In the sub-analysis among task performers, logistic regression was used to model the same three caregiver well-being outcomes, using having no choice, report of difficulty in performing medical/nursing tasks, and report of preparedness as the independent variables. In all analyses, survey weights were applied so that the estimates were generalizable to the 2014 U.S. population of informal caregivers (United States Census Bureau, 2014).

Results

Demographic and Descriptive Characteristics

Sociodemographic and caregiving characteristics are summarized for the sample and compared for those reporting they performed at least one medical/nursing task for their care recipient (58%) and those who did not perform tasks (Table 1). Compared to those who did not perform medical/nursing tasks, a higher proportion of those performing tasks were Black/non-Hispanic (14.1% vs. 11.4%) or Hispanic (20.3% vs. 12.5%), and a lower proportion were White/non-Hispanic (58% vs. 66.6%) or other race/ethnicity (7.6% vs. 9.5%; p < 0.01). More caregivers who performed medical/nursing tasks had high school education or less (41% vs. 31%), or income <$30,000 (31% vs. 25%; p < 0.02). A significantly higher percentage of caregivers performing medical/nursing tasks believed that they did not have a choice in becoming a caregiver as compared to those who did not perform medical/nursing tasks (55% vs. 43%; p < 0.01).

Sociodemographic and Caregiving Characteristics of U.S. Caregivers by Performance of Medical/Nursing TasksSociodemographic and Caregiving Characteristics of U.S. Caregivers by Performance of Medical/Nursing Tasks

Table 1:

Sociodemographic and Caregiving Characteristics of U.S. Caregivers by Performance of Medical/Nursing Tasks

Among caregivers who perform medical/nursing tasks, 75% reported having no preparation to do so. Compared with caregivers who were prepared to perform tasks, more of those with no preparation provided care for >5 years (26% vs. 17%; p = 0.01) and reported no choice in taking on the caregiving role (58% vs. 48%; p = 0.03); fewer cared for recipients with cancer (7% vs. 13%) or surgical/wound-related conditions (9% vs. 13%; p = 0.02) (data not shown).

Caregiver Reports of Well-Being

In the full sample, most caregivers reported emotional stress (84%) and a high burden of care (58%); 20% reported physical strain. Caregivers who perform medical/nursing tasks were significantly more likely (p < 0.01) to report emotional stress (89% vs. 77%), physical strain (27% vs. 9%), and high burden of care (79% vs. 33%) (Figure 1). These findings remained robust in the face of controls for important sociodemographic and caregiving variables (Table 2), with performance of medical/nursing tasks associated with higher risk of emotional stress (odds ratio [OR] = 2.35; 95% confidence interval (CI) [1.64, 3.41]; p < 0.01), physical strain (OR = 3.24; 95% CI [2.23, 4.7]; p < 0.01) and high burden of care (OR = 6.09; 95% CI [4.54, 8.15]; p < 0.01). Having no choice in caregiving was also associated with higher risk of emotional stress (OR = 2.84; 95% CI [1.92, 4.19]; p < 0.01) and physical strain (OR = 2.31; 95% CI [1.62, 3.30]; p < 0.001). Caregivers reporting Black/non-Hispanic race/ethnicity had lower risk of emotional stress and higher risk of high burden of care; those reporting “other” race/ethnicity also had higher risk of high burden of care.

Report of emotional stress, physical strain, and burden of care among U.S. caregivers by performance of medical/nursing tasks.

Figure 1.

Report of emotional stress, physical strain, and burden of care among U.S. caregivers by performance of medical/nursing tasks.

Logistic Regression of Emotional Stress, Physical Strain, and Burden of Care Among U.S. Caregivers (N = 1,248)Logistic Regression of Emotional Stress, Physical Strain, and Burden of Care Among U.S. Caregivers (N = 1,248)

Table 2:

Logistic Regression of Emotional Stress, Physical Strain, and Burden of Care Among U.S. Caregivers (N = 1,248)

Caregiver Well-Being Among Performers of Medical/Nursing Tasks

In adjusted models restricted to those performing medical/nursing tasks, reporting any difficulty in performing medical/nursing tasks was associated with higher risk of emotional stress (OR = 8.61; 95% CI [4.47, 16.51]; p < 0.01), physical strain (OR = 3.94; 95% CI [2.37, 6.56]; p < 0.01), and high burden of care (OR = 2.14; 95% CI [1.39, 3.31]; p = 0.01) (Table 3). Having no choice in caregiving was associated with higher risk of emotional stress and physical strain. Reporting Black/non-Hispanic race/ethnicity was associated with lower risk of emotional stress and higher risk of high burden of care, whereas reporting Hispanic race/ethnicity was associated with lower risk of physical strain and other/non-Hispanic race/ethnicity was associated with higher risk of high burden of care. Having no preparation for medical/nursing task performance or receiving paid help were not associated with any of the outcomes.

Logistic Regression of Emotional Stress, Strain, and Burden Among Caregivers Performing Medical/Nursing Tasks (n = 722)Logistic Regression of Emotional Stress, Strain, and Burden Among Caregivers Performing Medical/Nursing Tasks (n = 722)

Table 3:

Logistic Regression of Emotional Stress, Strain, and Burden Among Caregivers Performing Medical/Nursing Tasks (n = 722)

Discussion

In the current study's large, national sample of caregivers, we found that medical/nursing task performance was consistently associated with adverse caregiver outcomes, including emotional stress, physical strain, and high burden of care. Our findings were consistent with recent evidence in smaller samples indicating that caregivers who were responsible for medical/nursing tasks reported negative impact to their own health or well-being (Grant et al., 2013; Halpern et al., 2017; Mollica et al., 2017). As clinicians collaborating in care across health care settings, nurses are uniquely positioned to provide this much needed preparation and support for caregivers. Previous studies have demonstrated that caregiver training programs can increase self-efficacy, at least in the short-term (Belgacem et al., 2013; Fischer-Cartlidge et al., 2016; Forbat et al., 2018; Havyer et al., 2017; Hendrix et al., 2016; Hendrix et al., 2011; Holm et al., 2016; Krieger et al., 2017; Naylor et al., 2011; Toye et al., 2016; Wagle et al., 2018). However, more work is needed to understand which specific tasks caregivers find most difficult and which nursing interventions for caregivers best improve outcomes and provide the most lasting impact.

Of concern, 75% of caregivers who performed medical/nursing tasks in our sample had not had any preparation to do so. In subgroup analyses among caregivers who performed medical/nursing tasks, reporting no preparation to perform tasks was associated with higher risk of emotional stress; however, this association did not reach statistical significance. This is possibly because the number of participants who had received preparation was small, limiting power. Importantly, reports that medical/nursing tasks were difficult to perform were associated with adverse outcomes, suggesting that preparation alone may not be enough. Rather, caregivers may need ongoing training or support for the tasks they find difficult, particularly in the home setting, where care is provided. This need for continued assistance highlights opportunities for transition of care programs that follow and support individuals as they leave inpatient settings. More robust research is needed to understand the most effective role for nursing in caregiver training and support around medical/nursing tasks, and in a variety of settings along the continuum between hospital and home.

We also found a strong, significant association of reporting no choice in taking on the caregiving role with emotional stress and physical strain, independent of task performance. These findings raise important ethical questions about who is asked or compelled to take on the caregiving role. In many health care contexts, there is a tacit assumption that family members are willing and able to provide needed care at home. The issue of choice may be especially salient in situations where the caregiver's own health may be at risk, and among families with lower income and educational levels. We found that caregivers with worse health status who perform medical/nursing tasks are at higher risk of reporting physical strain, suggesting the need to evaluate caregiver health as part of assessment and preparation for performing medical/nursing tasks, especially those that may be physically demanding. Notably, caregivers who perform medical/nursing tasks tend to have lower incomes and levels of education while also being more likely to report that they did not have a choice in assuming care. Nurses may mitigate these risks through routine assessment of caregiver risk factors for increased burden of care or physical strain, and by eliciting and responding to caregiving willingness and capacity to assume responsibility for medical/nursing tasks.

Nursing assessment of caregiver motivation to take on the role is also warranted as part of person-centered care. Motivation to assume the role of informal caregiver is affected by factors such as social obligation (Corey & McCurry, 2017; Rand et al., 2019), cultural expectations (del-Pino-Casado et al., 2011; Greenwood & Smith, 2019), and relationship to care recipient (del-Pino-Casado et al., 2011; Torgé, 2014). Accordingly, nursing interventions to train care-givers in performing medical/nursing tasks may need to be culturally and individually tailored to account for sociocultural variations in the caregiver experience. Although some caregivers may benefit from emotional support or more flexibility in deciding how much of the caregiving role to assume, others may feel satisfied in their role but need support with or respite from complex care tasks. More work is needed to shed light on the best approaches to assess risks and support needs of diverse caregivers (Apesoa-Varano et al., 2015). There is also more to learn in the field of nursing education, and how to best prepare future nurses to effectively support caregivers as they increasingly become an integral part of the health care team.

Taken together, our findings have several important implications for nursing and health care policy. Evidence that many caregivers are underprepared to perform medical/nursing tasks supports expansion of targeted policies, such as the CARE Act (AARP, 2014), currently adopted in 36 states, and requiring hospitals to identify and provide care instructions to caregivers at hospital discharge. Given the increasing prevalence of informal caregiving and growing complexity of associated responsibilities, approaches that extend these efforts into the home and community setting are needed. Similarly, the expansion of already successful programs—such as the “no wrong door” initiative (Administration for Community Living, n.d.), which facilitates caregiver and care recipient access to long-term supports and services across agencies—would bolster these efforts and could potentially improve the consistency of available caregiver support across states. In response to the need for caregiver-centered coaching, the AARP (n.d.) has developed a series of videos for caregivers, care recipients, and health care providers focused on the training for and provision of medical/nursing tasks.

Limitations

The current study was not without limitations, including the cross-sectional design and reliance on secondary data. Our caregiver analysis provides useful information for medical/nursing task performance but does not allow comparison of caregivers to individuals not engaged in this role. Our findings are influenced by self-selection bias as only the responses of those who agreed to complete the online survey were included. This could lean toward those more motivated to complete a survey due to very negative or very positive experiences, or to a less-burdened group of caregivers with the time and computer access needed for survey completion. The use of self-report for the assessment of emotional stress, physical strain, and burden of care creates further bias given the potential for wide variability in related subjective experiences. We were unable to filter medical/nursing tasks by type or complexity (e.g., administering oral medication vs. performing urinary catheterization) because this level of detail was not originally collected. However, we postulate that our results likely underestimate the associations with difficulty in performing medical/nursing tasks, as the inclusion of less complex tasks may have diluted the effects of more complex tasks. At the same time, those performing the most complex tasks may have been involved in the most intense caregiving and therefore the least likely to have found time to complete the survey. Despite these limitations, our findings highlight the urgent need for high-quality preparation for caregivers, particularly those responsible for performing medical/nursing tasks.

Conclusion and Future Directions

Informal caregiver performance of medical/nursing tasks is associated with emotional stress, physical strain, and high burden of care, particularly among caregivers who reported that they did not have a choice in assuming the caregiving role. Future studies are needed to examine optimal training for caregivers providing medical/nursing tasks with attention to reducing emotional stress, physical strain, and burden of care. Further evaluation of caregiving transitional programs and the role of nursing in caregiver preparation and support are needed (Havyer et al., 2017). Targeted clinical and policy efforts to support informal caregivers might focus on those at highest risk of experiencing adverse outcomes—including those who report having no choice in taking on the caregiving role, those who perform complex medical/nursing tasks, and those who find the tasks difficult to perform. To this end, new health care approaches and payment models are needed to assure that nurses and other health care providers have meaningful conversations with caregivers about their willingness, availability, and ability to perform complex medical/nursing tasks, both at the time of diagnosis and throughout the caregiving experience.

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Sociodemographic and Caregiving Characteristics of U.S. Caregivers by Performance of Medical/Nursing Tasks

Characteristicn (%)p Value
All Caregivers (N = 1,248)Performed Tasks(n = 722)Did Not Perform Tasks(n = 526)
Age (years)0.73
  18 to 49593 (47.5)336 (46.5)257 (48.9)
  50 to 64419 (33.6)247 (34.2)172 (32.7)
  ≥65236 (18.9)139 (19.3)97 (18.4)
Gender0.629
  Female746 (59.8)436 (60.4)310 (59)
  Male502 (40.2)286 (39.6)216 (41)
Race/ethnicity<0.001
  White770 (61.7)419 (58)350 (66.6)
  Hispanic211 (17)147 (20.4)66 (12.5)
  Black162 (13)101 (14)60 (11.4)
  Other105 (8.3)55 (7.6)50 (9.5)
Marital status0.79
  Married/living with partner805 (64.5)471 (65.2)334 (63.5)
  Single/never married240 (19.2)140 (19.4)100 (19)
  Widowed/separated/divorced182 (14.6)98 (13.6)83 (15.8)
  Don't know/other21 (1.7)13 (1.8)9 (1.7)
Highest education level completed0.002
  Less than high school100 (8)70 (9.7)31 (5.9)
  High school/GED355 (28)224 (31)132 (25.1)
  Technical school/some college363 (29)208 (28.8)154 (29.3)
  College/graduate school430 (35)220 (30.5)209 (39.7)
Annual household income (U.S. dollars)0.02
  <30,000353 (28.3)223 (30.9)131 (24.9)
  30,000 to 74,000449 (36)265 (36.7)184 (35)
  >75,000446 (35.7)234 (32.4)211 (40.1)
Relationship to recipient<0.001
  Child/parent587 (47)352 (48.8)236 (44.9)
  Extended family/other324 (26)170 (23.5)154 (29.3)
  Friend/neighbor/don't know187 (15)78 (10.8)107 (20.3)
  Spouse/partner150 (12)122 (16.9)29 (5.5)
Length of time providing care (years)0.83
  <1616 (49.4)360 (49.9)256 (48.7)
  1 to 4327 (26.2)190 (26.3)137 (26)
  ≥5305 (24.4)172 (23.8)133 (25.3)
Choice in caregiving<0.001
  Had a choice628 (50.3)325 (45)302 (57.4)
  Did not have a choice/unsure620 (49.7)397 (55)224 (42.6)
Recipient has a long-term physical condition0.007
  Yes738 (59.2)452 (62.6)285 (54.5)
  No510 (40.8)270 (37.8)241 (45.5)
Main problem of recipient<0.001
  Other conditiona (reference)426 (34.1)206 (28.5)219 (41.6)
  Mobility impairment/musculoskeletal conditionb358 (28.7)199 (27.6)158 (30)
  Chronic illnessc180 (14.4)124 (17.2)56 (10.6)
  Alzheimer's/dementia103 (8.3)64 (8.9)39 (7.4)
  Surgical/wound care100 (8)69 (9.6)31 (5.9)
  Cancer82 (6.6)59 (8.2)23 (4.4)

Logistic Regression of Emotional Stress, Physical Strain, and Burden of Care Among U.S. Caregivers (N = 1,248)

CharacteristicEmotional StressPhysical StrainHigh Burden of Care
OR95% CIp ValueOR95% CIp ValueOR95% CIp Value
Performed medical/nursing tasks2.35[1.64, 3.41]<0.013.24[2.23, 4.7]<0.016.09[4.54, 8.15]<0.01
No choice providing care2.84[1.92, 4.19]<0.012.31[1.62, 3.3]<0.011.06[0.78, 1.44]0.71
Received paid help0.7[0.47, 1.04]0.070.83[0.59, 1.16]0.270.68[0.5, 0.92]0.01
Race/ethnicity
  White/non-Hispanic (ref)---------------------------------------------
  Black/non-Hispanic0.5[0.30, 0.82]<0.010.65[0.39, 1.07]0.091.49[1.02, 2.19]0.04
  Hispanic0.63[0.34, 1.14]0.130.6[0.32, 1.12]0.111.65[0.99, 2.82]0.07
  Other, non-Hispanic0.76[0.42, 1.37]0.111.23[0.72, 2.08]0.452.03[1.27, 3.24]<0.01
Primarily English speaking0.49[0.21, 1.1]0.081.6[0.69, 3.71]0.271.45[0.65, 3.26]0.36
Relationship to recipient
  Friend, neighbor, non-relative (ref)---------------------------------------------
  Spouse or partner2.73[1.38, 5.41]<0.011.49[0.72, 3.11]0.294.29[2.21, 8.34]<0.01
  Child or parent2.63[1.45, 3.86]<0.011.8[0.96, 3.36]0.071.4[0.9, 2.18]0.13
  Other relative1.28[0.78, 2.1]0.331.96[1.01, 3.8]0.051.3[0.82, 2.05]0.26
Excellent/very good caregiver health status1.09[0.68, 1.75]0.720.3[0.21, 0.44]<0.010.76[0.51, 1.13]0.17
Care recipient age >50 years0.83[0.5, 1.39]0.480.52[0.32, 0.87]0.010.63[0.4, 0.99]0.05
Care recipient has long-term condition0.59[0.41, 0.86]<0.010.69[0.47, 0.99]0.050.61[0.44, 0.84]<0.01
Care recipient's main health problem
  Other conditiona (ref)---------------------------------------------
  Alzheimer's/dementia2.05[0.82, 5.14]0.121.24[0.68, 2.27]0.481.4[0.87, 2.25]0.16
  Cancer2[0.82, 4.88]0.130.86[0.43, 1.69]0.651.72[0.93, 3.17]0.09
  Chronic illnessb0.94[0.54, 1.65]0.840.82[0.48, 1.36]0.441.02[0.63, 1.64]0.93
  Mobility impairment/musculoskeletal conditionc1.06[0.68, 1.65]0.791.1[0.71, 1.71]0.661.65[1.15, 2.36]<0.01
  Surgical/wound care0.59[0.31, 1.12]0.111.13[0.58, 2.2]0.722.63[1.4, 4.92]<0.01

Logistic Regression of Emotional Stress, Strain, and Burden Among Caregivers Performing Medical/Nursing Tasks (n = 722)

CharacteristicEmotional StressPhysical StrainHigh Caregiver Burden
OR95% CIp ValueOR95% CIp ValueOR95% CIp Value
Tasks difficult to perform8.61[4.47, 16.51]<0.013.94[2.37, 6.56]<0.012.14[1.39, 3.31]0.01
No choice providing care1.92[1.04, 3.56]0.041.81[1.18, 2.76]<0.011[0.65, 1.54]0.99
Received paid help1.1[0.59, 2.04]0.770.81[0.54, 1.22]0.320.67[0.43, 1.05]0.08
No preparation1.19[0.59, 2.39]0.620.77[0.49, 1.21]0.261.01[0.61, 1.65]0.98
Primarily English speaking0.49[0.14, 1.78]0.282.33[0.91, 6]0.083.39[1.05, 10.93]0.04
Race/ethnicity
  White/non-Hispanic (ref)---------------------------------------------
  Black/non-Hispanic0.44[0.2, 0.96]0.040.82[0.45, 1.51]0.522.64[1.43, 4.86]<0.01
  Hispanic0.75[0.25, 2.11]0.580.51[0.25, 0.99]0.051.54[0.77, 3.09]0.27
  Other, non-Hispanic0.51[0.21, 1.23]0.130.95[0.48, 1.88]0.882.01[1.01, 4.03]0.05
Relationship to recipient
  Friend, neighbor, non-relative (ref)---------------------------------------------
  Spouse or partner3.42[1.12, 10.49]0.031.19[0.48, 2.93]0.75.45[2.14, 13.89]<0.01
  Child or parent1.7[0.67, 4.32]0.261.53[0.7, 3.34]0.291.55[0.8, 3.02]0.2
  Other relative0.77[0.32, 1.88]0.571.46[0.63, 3.35]0.381.18[0.58, 2.4]0.65
Excellent/very good caregiver health status0.9[0.42, 1.82]0.720.23[0.14, 0.37]<0.010.6[0.35, 1.04]0.07
Care recipient has long-term condition0.6[0.28, 1.14]0.110.68[0.42, 1.1]0.120.59[0.37, 0.94]0.03
Care recipient's main health problem
  Other conditiona (ref)---------------------------------------------
  Alzheimer's/dementia1.31[0.28, 6.11]0.731.09[0.52, 2.3]0.813.13[1.4, 6.97]<0.01
  Cancer1.82[0.49, 6.8]0.370.92[0.43, 1.99]0.832.23[0.98, 5.05]0.06
  Chronic illnessb0.66[0.26, 1.64]0.371.07[0.58, 1.96]0.831.06[0.59, 1.92]0.85
  Mobility impairment/musculoskeletal conditionc0.7[0.32, 1.54]0.381.17[0.67, 2.05]0.581.95[1.16, 3.25]0.01
  Surgical/wound care0.24[0.08, 0.76]0.021.28[0.58, 2.84]0.544.03[1.54, 10.53]<0.01
Authors

Ms. Keeton is Doctoral Candidate, Mr. Trask is Doctoral Candidate, and Dr. Bell is Professor and Associate Dean for Research, Betty Irene Moore School of Nursing, University of California, Davis, Davis, California; and Dr. Whitney is Assistant Professor, The Valley Foundation School of Nursing, San Jose State University, San Jose, California. Ms. Keeton is also Health Sciences Clinical Professor, Department of Family Health Care Nursing, University of California, San Francisco, San Francisco, California.

The authors have disclosed no potential conflicts of interest, financial or otherwise.

Address correspondence to Victoria F. Keeton, MS, RN, CPNP-PC, CNS, Health Sciences Clinical Professor, Department of Family Health Care Nursing, University of California, San Francisco, 2 Koret Way, Box 0606, San Francisco, CA 94143; email: vfkeeton@ucdavis.edu.

Received: February 05, 2020
Accepted: April 28, 2020

10.3928/00989134-20200811-05

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