Employment Outcomes, Financial Burden, Anxiety, and Depression Among Caregivers of African American Cancer Survivors

Abstract

PURPOSE:

Caregivers of cancer survivors may need to take time off work or make other employment changes to handle caregiving demands. Work impacts of caregiving, financial burden, and psychosocial outcomes of caregivers are not well understood.

METHODS:

Results include information from surveys completed by 202 employed caregivers of participants in the Detroit Research on Cancer Survivors cohort, a population-based cohort of African American survivors of breast, colorectal, lung, or prostate cancer. Relationships between work outcomes, financial burden, and anxiety and depression were assessed using logistic regression models controlling for demographic and cancer-related factors.

RESULTS:

Most (73.8%) caregivers made some employment change. Sixty percent changed their schedule, hours, duties, or employment status; 15.3% took at least 1 month off to provide care, and 38% reported difficulty balancing work and caregiving. Employment changes were strongly associated with difficulty balancing work and caregiving (odds ratio [OR], 5.83; 95% CI, 2.38 to 14.0) and financial burden (OR, 2.12; 95% CI, 1.05 to 4.27). Difficulty balancing work and caregiving was associated with symptoms of anxiety (OR, 1.86; 95% CI, 1.01 to 3.43) and depression (OR, 2.40; 95% CI, 1.16 to 4.96). High (v low) financial burden was associated with symptoms of anxiety (OR, 2.85; 95% CI, 1.01 to 8.06).

CONCLUSION:

Difficulty balancing work and caregiving is common among caregivers of African American cancer survivors and is associated with symptoms of depression and anxiety. Supports for caregivers facing employment challenges may improve their psychosocial well-being.

INTRODUCTION

Patients with cancer and cancer survivors commonly rely on family members and friends to act as caregivers to help manage cancer treatment and the late and lasting effects of that treatment. Caregiving, including helping with patient care and household maintenance and providing emotional and logistical support, can be physically and emotionally demanding and can require employed caregivers to take time off of work or make other work changes to provide care.^1-4

Substantial numbers of cancer caregivers report adverse work impacts,^5,6 difficulty balancing work and caregiving,^7,8 productivity loss,⁹ and extended employment changes, including time off and changes to hours, duties, or employment status.¹ These employment changes can lead to reduced income and financial difficulties. Some caregivers report spending 10% or more of household income on care,^10,11 and nearly 50% have reported additional financial burdens, including taking out loans or mortgages, spending savings, or taking additional jobs to meet the costs of caregiving.^6,11

Previous studies of cancer caregivers suggest that caregiving can also affect caregivers’ psychosocial well-being. Up to two thirds of caregivers report high depression scores, and one third report very high scores.¹² Although there is evidence that the prevalence of depression is higher in employed caregivers of patients with cancer at the end of life compared with those who are not working,¹³ the association between employment impacts of caregiving and caregivers’ psychosocial well-being is not understood. In addition, evidence exists to suggest that the caregiving experience differs by race, with African American caregivers reporting more social support and preparedness for caregiving than white caregivers but also more hours per week of caregiving and performing more instrumental activities of daily living.^14,15

In this study, we describe the prevalence of several forms of work impacts, financial burden, and psychosocial outcomes reported by caregivers of African American cancer survivors. We further test whether work impacts are associated with difficulty balancing work and caregiving and with financial burden and whether difficulty balancing work and caregiving and financial burden are associated with symptoms of depression and anxiety. We hypothesize that difficulty balancing work and caregiving and financial burden will be more common among caregivers who report work impacts related to caregiving and that symptoms of depression and anxiety will be more common among caregivers who report difficulty balancing work and caregiving and financial burdens. This study is the first, to our knowledge, to focus on employment, financial, and psychosocial outcomes of caregivers of African American cancer survivors.

METHODS

Study Population

Detroit Research on Cancer Survivors (ROCS) is a population-based cohort designed to investigate associations between medical history, health behaviors, financial factors, and health-related outcomes among African American cancer survivors. Survivors were eligible to join the cohort if they self-identified as African American or black; were diagnosed with primary, invasive female breast, colorectal, lung, or prostate cancer since January 1, 2013; were between the ages of 18 and 79 years at diagnosis; and were able to complete the ROCS surveys in English. Participants were identified through the Metropolitan Detroit Cancer Surveillance System, the population-based cancer registry covering metropolitan Detroit and a founding participant in the National Cancer Institute’s SEER program. ROCS participants had the opportunity to nominate a friend or family member of any race who acted as a caregiver to participate in the ROCS Caregiver study. All participants in the ROCS Caregiver study were informal caregivers and were not compensated for providing care. All references to caregiving throughout this manuscript refer to informal, uncompensated caregiving. Caregiver participants completed surveys including demographic information, employment and financial impacts of caregiving, and several measures of psychosocial well-being online via Qualtrics (N = 101; 51%) or over the phone (N = 98; 49%) with a trained interviewer. Caregivers were surveyed a median of 14 (range, 3 to 74) months after the initial cancer diagnosis of the survivor participating in ROCS. The Karmanos Cancer Institute Protocol Review and Monitoring Committee and the Wayne State University Institutional Review Board approved this research, and all participants provided informed consent.

The ROCS Caregiver recruitment protocol allows up to nine follow-up phone calls (three during the day, three evening, three weekend) starting 2 weeks after mailing the initial study invitation to complete the baseline survey. As of June 12, 2019, 586 caregivers were nominated by ROCS participants, and 414 completed the baseline survey (87% of those with complete recruitment attempts). Of these, 12 were excluded for missing registry confirmation of the survivor’s eligibility for ROCS, 189 were excluded for not working full or part time at the time of the survivor’s diagnosis, and nine were excluded for missing data on work outcomes, leaving an analysis sample of 202 employed caregivers.

Study Measures

Work impacts were measured by asking employed caregivers whether, to provide care or assistance to the survivor since his or her cancer diagnosis, they had to do any of the following (yes/no): change work schedule, change the number of hours worked each week, change job duties, change employment status (eg, leave a job or get a new job), take extended paid time off from work, or take unpaid time off from work. Caregivers who indicated they took extended paid or unpaid time off were then asked the length of time taken off (responses included: < 1 week, 1 week to 1 month, 1 to 3 months, 3 to 6 months, or 6 months or more). Caregivers were counted as making work changes if they changed their schedule, duties, hours, or employment status and as taking extended time off if they took at least 1 month of paid or unpaid time off to provide care. Participants were counted as having any work impact if they answered yes to any of the above items.

Difficulty balancing work and caregiving was measured by a single item: “In general, how difficult is/was it for you to balance work and caregiving demands.” Caregivers who responded “not at all” or “a little” difficult were considered to have minimal difficulty balancing work and caregiving, whereas those who responded that balancing work and caregiving was “somewhat,” “very,” or “extremely” difficult were considered to have had difficulty balancing work and caregiving.

Financial burden was assessed by asking caregivers to indicate how much they agreed or disagreed with the following three statements: “My financial resources are adequate to pay for things that are required for caregiving”; “It is difficult to pay for the things that (the survivor) needs”; and “Caring for (the survivor) puts a financial strain on me.” Responses ranged from 1 (“disagree a lot”) to 5 (“agree a lot”) and were coded so that higher scores reflect higher burden. Financial burden is reported on the basis of a summed scale, with a score of 3 categorized as “low,” 4 to 7 categorized as “medium,” and 8 or higher categorized as “high.”

Anxiety and depression symptoms were measured using the Patient-Reported Outcomes Measurement Information System (PROMIS) four-item short forms. For each scale, participants were asked how each of four statements (eg, “I felt fearful” or “I felt worthless”) applied to them in the past 7 days. Responses ranged from 1 (“never”) to 5 (“always”). Reponses were coded so that higher scores indicate higher levels of depression and anxiety,^16,17 and scores were operationalized as being above or below the normative population mean of 50. PROMIS Depression and Anxiety measures have demonstrated strong convergent validity and sensitivity to change.^18,19

Statistical Analysis

All analyses were conducted in SAS (Cary, NC) version 9.4, and an α of 0.05 was set to determine statistical significance. The distribution of select caregiver characteristics, survivor characteristics, and caregiver employment and psychosocial outcomes were summarized using counts and percentages for categorical data and means for continuous data. χ² tests for categorical data and Cochran-Armitage trend tests for ordinal data were used to assess differences in caregiver work impacts by survivor and caregiver characteristics. We used logistic regression to estimate odds ratios and 95% CIs for difficulty balancing work and caregiving and financial burden by types of work impacts and for symptoms of depression and anxiety by difficulty balancing work and caregiving and financial burden. Adjusted models control for characteristics that differed significantly in univariate analysis and include marital status of caregiver, categorical age of caregiver, survivor cancer site, and survivor receipt of chemotherapy, all using categories listed in Table 1.

TABLE 1.

Caregiver and Cancer Survivor Characteristics

RESULTS

Table 1 lists characteristics of both the caregivers and the cancer survivors to whom they provided care. Among caregivers, mean age at survey completion was 47.4 years, most (78.2%) were women, and nearly all (92.6%) reported African American race. A plurality (41.6%) of caregivers reported that they were the survivor’s spouse or partner, followed by the survivor’s child (30.2%), other family member (20.3%), or friend (7.9%). More than half of caregivers lived in the survivor’s household.

Among survivors, mean age at diagnosis was 57.1 years, and 57.9% were women. Breast (44.6%) was the most common form of cancer among the survivors, followed by prostate (31.2%), colorectal (12.4%), and lung (11.9%). Approximately one third were diagnosed with stage I disease, two thirds (69.3%) underwent surgery, 48% received radiation, and 41.6% received chemotherapy. Cancer survivors’ health-related quality of life, as measured by the Functional Assessment of Cancer Therapy–General, was similar to that from normative data in United States adults.²⁰

Table 2 lists the prevalence of work outcomes, difficulty balancing work and caregiving, financial burden, and symptoms of depression and anxiety among caregivers. Nearly three quarters (73.8%) of employed caregivers experienced work impacts related to caregiving. Nearly 60% changed their schedule, hours, duties, or employment status. Changes to work schedules (53%) and hours (38.6%) were relatively common, whereas few caregivers reported changes to job duties (5.4%) or employment status (6.9%). More than half (52%) of employed caregivers took time off to provide care, including 15.3% who took at least 1 month off. More than one quarter (27.2%) took unpaid time off, including 11.4% who took at least 1 month of unpaid time.

TABLE 2.

Caregiver Employment and Psychosocial Outcomes

Nearly 40% of caregivers reported difficulty balancing work and caregiving. Many caregivers reported that caregiving represented a financial strain, with 34.7% disagreeing that they had adequate resources to cover the costs of caregiving, 23.8% agreeing that it was difficult to pay for costs related to caregiving, and 19.3% reporting that caregiving represented a financial strain. Among employed caregivers, the mean PROMIS anxiety score was 50.3, similar to the normative population mean of 50, with 52.8% reporting scores above the mean. The mean depression score was 48.7, with 41.7% reporting scores above the population mean of 50.

Predictors of work impacts are presented in Appendix Table A1 (online only). Taking at least 1 month off and at least 1 month of unpaid time off were more common among caregivers who were married or living with a partner than those who were unmarried. Cancer survivor receipt of chemotherapy was associated with a greater prevalence of caregivers taking time off and making changes to hours, duties, schedules, or employment status. A greater proportion of caregivers of colorectal (60%) and lung (54.2%) than breast (34.4%) or prostate (29.5%) cancer survivors reported difficulty balancing work and caregiving (P = .018).

Tables 3 and 4 give unadjusted and adjusted associations between work impacts, difficulty balancing work and caregiving, financial burden, and symptoms of depression and anxiety. In adjusted models, odds of difficulty balancing work and caregiving were 5.83 (95% CI, 2.38 to 14.0) times as high among caregivers who reported any work impact related to caregiving compared with those who did not. Work changes (adjusted OR [aOR], 5.88; 95% CI, 2.81 to 12.30), extended time off (aOR, 9.47; 95% CI, 3.24 to 27.70), and extended unpaid time off (aOR, 5.06; 95% CI, 1.68 to 15.24) were all strongly associated with difficulty balancing work and caregiving. Caregivers who reported any work impact were more than twice as likely (OR, 2.12; 95% CI, 1.05 to 4.27) to report financial burden related to caregiving as those who did not, driven by an association between making changes to schedules, hours, duties, or employment status (OR, 2.12; 95% CI, 1.14 to 3.97).

TABLE 3.

Associations Between Employment Outcomes, Financial Burden, Depression, and Anxiety

TABLE 4.

Associations Between Employment Outcomes, Depression, and Anxiety

None of the work impacts related to caregiving were associated with anxiety scores above the population mean (Table 4). Taking at least 1 month off of work (paid or unpaid) was strongly associated with depression scores above the population mean (OR, 3.71; 95% CI, 1.41 to 9.81).

Difficulty balancing work and caregiving was associated with both depression and anxiety. Odds of anxiety scores above the population mean were 86% higher (OR, 1.86; 95% CI, 1.01 to 3.43), and odds of depression scores above the population mean were 140% higher (OR, 2.40; 95% CI, 1.16 to 4.96) among caregivers who reported difficulty balancing work and caregiving compared with those who did not.

Odds of anxiety scores above the mean were also higher among caregivers reporting both medium (OR, 3.10; 95% CI, 1.07 to 9.01) and high (OR, 2.85; 95% CI, 1.01 to 8.06) levels of financial burden compared with those reporting low financial burden related to caregiving. Perceived financial burden was not associated with depression scores above the population mean.

DISCUSSION

Nearly three quarters of caregivers experienced work impacts related to caregiving, and close to 40% had difficulty balancing work and caregiving responsibilities. All work impacts considered were strongly associated with caregivers’ experience of difficulty balancing work and caregiving, which was associated with symptoms of depression and anxiety. Many caregivers also reported financial burdens related to caregiving. Work impacts overall were associated with financial burden, driven by changes to duties, hours, schedules, or employment status, and financial burden was associated with symptoms of anxiety.

Previous work has described the impact of cancer and cancer treatment on survivors’ work outcomes,^21,22 but much less is known about the work impacts of cancer caregiving. de Moor et al¹ estimated that 43.3% and 57.8% of caregivers experienced work impacts related to cancer caregiving in two population-based surveys of cancer survivors, lower than our estimate of 73.8%. In this prior work, caregivers were counted as taking extended time off from work if they reported taking at least 2 months off for caregiving duties, whereas we included those taking at least 1 month off. In addition, both surveys asked cancer survivors to report on their caregivers’ work impacts, whereas we include reports from the caregivers themselves.

Using data from the Cancer Care Outcomes Research and Surveillance consortium, van Ryn et al⁸ estimate that 28% of caregivers of colorectal or lung cancer survivors reported difficulty balancing work and caregiving. This estimate is lower than our finding that 38% of employed caregivers of African American survivors had difficulty balancing work and caregiving, despite the fact that difficulty balancing work and caregiving is more common among caregivers of lung and colorectal cancer survivors. When limiting our results to caregivers of lung and colorectal cancer survivors, 57.1% report difficulty balancing work and caregiving. This difference may be at least partially the result of differences in the race distribution of caregivers in Cancer Care Outcomes Research and Surveillance (75% white) and ROCS (93% African American).

African American caregivers may be at particular risk for adverse employment outcomes for several reasons. In 2018, African Americans accounted for 12.3% of all employed persons age 16 and older in the United States, but this proportion was lower (9.6%) in management, professional, and related occupations and higher in production, service, and transportation occupations (16.6% to 17.3%).²³ These differences in occupation likely also represent differences in employer-sponsored benefits such as paid vacation or sick time²⁴ and employer accommodations that our results suggest strongly affect caregivers’ experience of difficulty balancing work and caregiving. Indeed, access to employment-related benefits is more common among white than African American adults.²⁵ This may contribute to the greater proportion of caregivers reporting difficulty managing work and caregiving in this population of predominantly African American caregivers compared with previous estimates⁸ and their subsequent associations with caregiver depression and anxiety.

Depression and anxiety are common among caregivers of patients with cancer,^12,26 and work impacts of caregiving may contribute to depression and anxiety among caregivers.^27-30 This has implications not only for the caregivers but also for the patients for whom they provide care.³¹ Emotional distress in caregivers can negatively affect adjustment of patients with cancer,³² and negative emotions and unmet needs related to caregiving adversely affect the quality of caregiving.^33,34 In other disease contexts, effective caregiving has been associated with patient adherence to medication regimens^35,36 as well as to diet and physical activity recommendations,^37,38 suggesting that improving caregiver well-being has the potential to benefit patients as well as caregivers.

This study features many important strengths that contribute to its value in describing outcomes among cancer caregivers. By including a population of caregivers of African American survivors, this work describes employment, economic, and psychosocial outcomes among a population at higher risk for adverse impacts related to caregiving but that has been under-represented in prior work. This work features high response rates among invited caregivers and uses validated measures of psychosocial outcomes. Detailed surveys allowed for control of confounding by both caregiver- and survivor-level characteristics.

Limitations of this work should be noted. Although the inclusion of caregivers of African American cancer survivors provides valuable insight into the employment, economic, and psychosocial outcomes of a caregiver population that has been under-represented in previous work, these findings may not be generalizable to other groups of caregivers. Although response to the ROCS Caregiver study is high, caregivers were only eligible to participate by nomination of a cancer survivor participating in the ROCS cohort, which could produce both survival and selection bias. Caregiver employment status is only available at the time of the survivor’s diagnosis. In addition, caregivers who experienced the most serious work impacts may more accurately report them than those who were less affected by caregiving. This may be especially true for caregivers interviewed several years after the survivor’s diagnosis, and this potential recall bias would result in inflated estimates of association. Research is increasingly focused on the impact of cancer and cancer treatment on survivors’ employment, financial, and psychosocial outcomes.^21,22,39,40 Our findings suggest that many cancer caregivers also experience adverse employment, financial, and psychosocial outcomes, and these may have implications for the care they provide. As the population of cancer survivors grows and treatment options increasingly include oral and outpatient therapies, caregivers are likely to play an even larger role in cancer care in the future. Additional work, including observational research and the development and implementation of interventions and potential policy solutions, is necessary to better understand how to support caregivers’ financial and psychosocial well-being.

APPENDIX

TABLE A1.

Employment Outcomes by Caregiver and Cancer Survivor Characteristics

AUTHOR CONTRIBUTIONS

Conception and design: Theresa A. Hastert, Kendra Schwartz, Felicity W.K. Harper, Ann G. Schwartz

Financial support: Ann G. Schwartz

Administrative support: Ann G. Schwartz

Provision of study material or patients: Jennifer L. Beebe-Dimmer, Ann G. Schwartz

Collection and assembly of data: Theresa A. Hastert, Julie J. Ruterbusch, Mrudula Nair, Mirza Ishrat Noor, Jennifer L. Beebe-Dimmer, Kendra Schwartz, Tara E. Baird, Ann G. Schwartz

Data analysis and interpretation: Theresa A. Hastert, Julie J. Ruterbusch, Mrudula Nair, Felicity W.K. Harper, Hayley Thompson

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

Employment Outcomes, Financial Burden, Anxiety, and Depression Among Caregivers of African American Cancer Survivors

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jop/site/ifc/journal-policies.html.

No potential conflicts of interest were reported.