Anxiety,Depression,Quality of Life,Caregiver Burden,and Perceptions of Caregiver-Centered Communication among Black and White Hospice Family Caregivers

Abstract

Background:

Anxiety, depression, and reduced quality of life (QOL) are common problems for hospice family caregivers, but it is unknown if disparities in these experiences exist among Black and White caregivers.

Objectives:

To compare anxiety, depression, QOL, caregiver burden, and perceptions of caregiver-centered hospice team communication between Black and White hospice family caregivers.

Design:

Secondary analysis of baseline data from two randomized clinical trials.

Setting/Subjects:

Seven hundred twenty-two Black and White hospice family caregivers ages 18+ from Midwestern and Northeastern United States.

Measurements:

Measures included the Generalized Anxiety Disorder-7 (GAD-7), Patient Health Questionnaire (PHQ-9), Caregiver Quality-of-Life Index–Revised (CQLI-R), Zarit Burden Interview (ZBI-7), and Caregiver-Centered Communication Questionnaire (CCCQ).

Results:

Black and White caregivers differed across demographic and socioeconomic variables. Nearly one-third of hospice family caregivers reported moderate-to-severe anxiety (32.1%) and moderate-to-severe depressive symptoms (32.0%). White caregivers reported lower QOL than Black caregivers (p = 0.04), specifically in emotional (p = 0.02) and social (p = 0.0005) domains. In multiple regression analyses controlling for caregiver and patient factors, we found no racial differences in depression, anxiety, QOL, caregiver burden, or perceptions of caregiver-centered hospice communication.

Conclusions:

Despite demographic and socioeconomic differences, Black and White hospice family caregivers experience similarly high levels of anxiety, depression, burden, and perceptions of hospice communication. Interventions to support hospice family caregivers across racial groups and research that identifies factors that mediate social determinants of health in this population are needed. The development and validation of culture-concordant mental health screening tools in racially diverse populations is recommended.

Trial registration: ClinicalTrials.gov NCT02929108 and ClinicalTrials.gov NCT01444027.

Introduction

Although hospice care benefits seriously ill patients and their families by improving care quality¹ and enhancing quality of life (QOL),^2–4 anxiety, depression, and reduced QOL are prevalent among hospice family caregivers—the family, partners, and friends who care for persons on hospice.^5–7 Providing most of the care at home and managing and coordinating care with trained staff across settings,⁵ hospice family caregivers may experience burdens and stressors^8,9 that can negatively impact physical, emotional, and financial aspects of their well-being and health.^10–13 Social support¹⁴ and positive aspects of caregiving, such as experiencing personal satisfaction or strengthened relationships, and how positively or meaningfully caregivers perceive the caregiving experience^9,15–17 may help mitigate negative effects.¹⁸

Anxiety is higher among caregivers than the general population,¹⁹ with rates higher among hospice caregivers than other types of caregivers.¹⁰ Evidence suggests that one-third of hospice caregivers have moderate-to-severe anxiety.^5,11 Twenty-six to 57% of hospice family caregivers have depression,^5–7 with almost a quarter reporting moderate-to-severe depression.⁵ Left untreated, caregiver mood disorders may affect a patient's care.²⁰ Effective communication between clinicians and hospice family caregivers may also influence a hospice patient's care.^21,22 In addition to supporting patient care, high-quality hospice communication has been found to reduce family caregiver anxiety and improve caregiver QOL.²³

However, little is known about how hospice family caregivers from different racial groups experience mental health disorders and burdens while caring for a dying person. Given racial disparities in end-of-life decision making and hospice care^24–29 and socioeconomic and cultural factors that affect hospice use^30–32 and the caregiving experience,^33–35 it is important to understand if hospice family caregivers differ by race in anxiety, depression, QOL, burden, and communication experiences.

Bereaved Black caregivers, for example, are less likely than White caregivers to highly rate the quality of hospice recipients' care, citing greater concerns with care coordination, emotional support provided to the family, communication with the hospice care team, and unmet pain and symptom needs³⁶ that may be grounded in cultural or racial experiences.³⁷

In addition, greater prevalence of chronic physical health conditions among Black adults^38,39 and racial inequities in self-rated health,⁴⁰ experiences of racism in health care,^41–43 less access to and use of mental health resources,^44,45 and racial disparities in socioeconomic factors and resources that typically assist family caregiving—such as income, employment, marriage, housing, and related stressors^38,46–50—may create disparities in hospice caregiver burden, QOL, and mental health outcomes. At the same time, studies show that Black caregivers in general report lower levels of caregiver burden, depression, and anxiety; better well-being; more benign appraisals of stress and benefits of caregiving; and greater religious coping than White caregivers.^51–53

The purpose of this study was twofold: first, to describe demographics and caregiving experiences (e.g., duration of caregiving, weekly hours caregiving) by racial group and second, to understand if anxiety, depression, QOL, caregiver burden, and perceptions of hospice team communication differ between Black and White hospice family caregivers. We hypothesized racial differences in outcomes would exist, but due to possible competing effects of variables reported in the literature did not hypothesize a directional difference.

Methods

We conducted a secondary analysis using data from two geographically distinct studies, a randomized controlled trial of a problem-solving intervention for hospice family caregivers conducted in a racially diverse, urban area in Northeast United States (Problem-Solving Intervention for Hospice Caregivers [PISCES] trial, 2016–2021)⁵⁴; and a randomized controlled trial of a psychosocial intervention for hospice family caregivers conducted in rural and urban areas of the Midwestern United States (Access for Cancer Caregivers for Education and Support for Shared Decision Making [ACCESS] trial, 2018–2020).⁵⁵

The studies used similar protocols and instruments to capture data. Protocols for both studies have been published.^54,55 In both studies, only baseline, preintervention data were used. The parent studies and combined database study, which involved deidentified patient data, were approved by Institutional Review Boards at the University of Pennsylvania and Washington University in St. Louis through a reliance agreement with the University of Missouri.

Inclusion criteria

Inclusion criteria differed by specific study and can be found elsewhere,^54,55 but in general participants were included if they were ≥18 years and were a family, partner, or friend caring for a hospice patient associated with one of the participating hospice agencies. Differences in inclusion criteria included diagnosis, mental health status, patient prognosis, and access to phone or computer with Internet access.

Measures

Demographics

Caregiver characteristics included age, gender, race, ethnicity, marital status, level of education, relationship to patient, distance lived from patient, geographic location (Northeast vs. Midwest), income, employment status, changes in employment due to caregiving, out-of-pocket expenses due to caregiving in the last year, and whether the caregiver hired anyone to assist with caregiving. Patient characteristics included age, gender, race, ethnicity, marital status, type of residence, level of education, clinical diagnosis, and dementia status.

Anxiety

Caregiver anxiety symptoms were measured using the 7-item Generalized Anxiety Disorder (GAD-7) scale.⁵⁶ Participants were asked how often they experienced seven anxiety symptoms, with individual scores assigned to the response categories of “not at all” (0), “several days” (1), “more than half the days” (2), and “nearly every day” (3). Total scores range from 0 to 21 with scores of ≥10 considered clinically significant, warranting possible treatment.⁵⁶ The GAD-7 has been shown to have good internal consistency (Cronbach's alpha = 0.92) and test–retest reliability (intraclass correlation coefficient [ICC] = 0.83).⁵⁶

Depression

Depression was measured using the Patient Health Questionnaire 9-item (PHQ-9) scale, a reliable and valid tool for assessing depression symptoms and severity.^57,58 Participants were asked how often they experienced nine depression symptoms, with individual scores assigned to the response categories of “not at all” (0), “several days” (1), “more than half the days” (2), and “nearly every day” (3). Total scores range from 0 to 27, with scores of ≥10 indicating moderate-to-severe depression symptoms.⁵ The PHQ-9 has been shown to have good internal consistency (Cronbach's alpha = 0.892) and test–retest reliability (ICC = 0.737).⁵⁹

Quality of life

QOL was measured using the Caregiver Quality-of-life Index–Revised (CQLI-R), a reliable and valid 4-item questionnaire used to measure QOL overall and in four domains (emotional, social, physical, financial QOL) with self-reported ratings from 0 (low) to 10 (high).^60,61 The tool has demonstrated excellent test–retest reliability (r_s = 0.912, p < 0.001) for the total score and for individual items (r_s ranging from 0.811 to 0.955, p < 0.001) and good internal consistency (Cronbach's alpha = 0.769 and 0.705 for time 1 and time 2).

Caregiver burden

Caregiver burden was measured using the 7-item brief version of the Zarit Burden Interview (ZBI-7), a valid instrument for measuring caregiver burden in palliative care that includes questions about caregiver strain and effects on work, relationships, caregiver health, and more.⁶² Scores were rated on a 5-point Likert scale ranging from 0 (“never”) to 4 (“nearly always”) with total scores ranging 0–35. Higher total scores indicate greater burden. The ZBI-7 has good internal consistency (Cronbach's alpha = 0.83) and moderate inter-rater reliability (ICC = 0.51). Caregiver burden scores were only available in one dataset in our study (ACCESS).

Perceptions of caregiver-centered hospice communication

The Caregiver-Centered Communication Questionnaire (CCCQ) was used to measure hospice family caregivers' perceptions of caregiver-centered health care communication.⁶³ The questionnaire includes five subscales—exchange of information, fostering health relationships with health care team/provider, emotions, managing care, and decision making—with response options adapted to a 5-point Likert scale, with 1 meaning “strongly disagree” and 5 meaning “strongly agree.” Higher total scores indicate better communication. The CCCQ demonstrates excellent internal consistency (Cronbach's alpha = 0.97 for the entire scale and 0.82–0.93 for the five subscales).

Data analysis

To examine differences in caregiver characteristics, patient characteristics, and outcomes between caregiver racial groups, we used descriptive statistics, chi-square tests, two-sample t-tests, and Fisher's exact tests depending on data type. To compare depression, anxiety, QOL, caregiver burden, and caregiver perceptions of hospice communication quality, we performed bivariate analyses using chi-square tests and two-sample t-tests.

To identify factors contributing to racial differences in caregiver depression, anxiety, QOL, caregiver burden, and caregiver perceptions of the quality of communication with hospice outcomes, we ran multiple regression models adjusting for the following nine variables: caregiver age, caregiver gender, caregiver marital status, caregiver education level, caregiver relationship to patient, caregiver/patient geographic location, distance caregiver lives from patient, caregiver employment status, and patient residence.

For all analyses, SAS v.9.4 was used. Statistical significance was taken at the 0.05 level. To address data missingness, complete case analysis was conducted. Percentages reported are for observed data only.

Results

The sample of 722 hospice family caregivers included 176 Black (24.4%) and 546 White (75.6%) participants. Table 1 describes the sample overall and by racial group. Caregivers in our sample were an average 57.5 years old, predominantly female (79.0%), predominantly married or partnered (64.2%), not employed (56.7%), and were typically an adult child caring for a parent (47.8%). Most caregivers lived in the same residence as the patient (58.7%), although 35.3% lived up to an hour away.

Table 1.

Description of Hospice Family Caregivers in Study Sample by Caregiver Racial Group

	Total sample n = 722	Black hospice family caregivers n = 176 (24.38%)	White hospice family caregivers n = 546 (75.62%)	p
Caregiver age in years, mean (std)	57.46 (12.49)	56.19 (11.80)	57.87 (12.68)	0.12
Caregiver gender^a
Female	569 (79.03%)	152 (86.36%)	417 (76.65%)	0.006
Caregiver marital status^a
Single, never married/partnered	134 (18.98%)	62 (37.75%)	72 (13.33%)	<0.0001
Married/partnered	453 (64.16%)	66 (39.76%)	387 (71.67%)
Divorced/separated	63 (8.92%)	21 (12.65%)	42 (7.78%)
Widowed	56 (7.93%)	17 (10.24%)	39 (7.22%)
Caregiver education level^b
Less than high school	13 (1.84%)	4 (2.41%)	9 (1.69%)	0.002
High school/GED	145 (20.51%)	47 (28.31%)	98 (18.39%)
Some college, trade school, associate's degree	232 (32.81%)	64 (38.55%)	168 (31.52%)
Bachelor's/undergraduate degree	160 (22.63%)	26 (15.66%)	134 (25.14%)
Graduate/professional degree	149 (21.07%)	25 (15.06%)	124 (23.26%)
Caregiver relationship to patient^a
Spouse or partner	213 (30.30%)	31 (18.67%)	182 (33.89%)	0.002
Parent	38 (5.41%)	11 (6.63%)	27 (5.03%)
Adult child	336 (47.80%)	87 (52.41%)	249 (46.37%)
Sibling	37 (5.26%)	14 (8.43%)	23 (4.28%)
Other	79 (11.24%)	23 (13.86%)	56 (10.43%)
Caregiver/patient location
Northeast United States	334 (46.26%)	139 (78.98%)	195 (35.71%)	<0.0001
Midwest United States	388 (53.74%)	37 (21.02%)	351 (64.29%)	<0.0001
Distance caregiver lives from patient^a
Same residence	407 (58.65%)	94 (58.02%)	313 (58.83%)	0.06
Up to one hour away	245 (35.30%)	64 (39.51%)	181 (34.02%)
More than one hour away	42 (6.05%)	4 (2.47%)	38 (7.14%)
Caregiver annual household income^c
<$20,000 per year	46 (13.57%)	11 (31.43%)	35 (11.51%)	0.0003
$20,000–$39,999	72 (21.24%)	10 (28.57%)	62 (20.39%)
$40,000–$69,999	94 (27.73%)	11 (31.43%)	83 (27.30%)
>$70,000	127 (37.46%)	3 (8.57%)	124 (40.79%)
Caregiver employment: currently working^a
Yes	302 (43.33%)	68 (40.96%)	234 (44.07%)	0.48
Employment-related changes caregiver has experienced due to caring for patient on hospice^a
Cutback on number of hours you work or quit work entirely	204 (38.86%)	41 (41%)	163 (38.35%)	0.02
Taken a leave of absence from work (including family and medical leave)	48 (9.14%)	15 (15.0%)	33 (7.76%)
Used your own sick leave or vacation time	91 (17.33%)	20 (20.0%)	71 (16.71%)
None of these apply	152 (28.95%)	17 (17.0%)	135 (31.76%)
Other	30 (5.71%)	7 (7.0%)	23 (5.41%)
Caregiver out-of-pocket expenses due to caring for patient on hospice^d
Yes	235 (74.60%)	94 (73.44%)	141 (75.40%)	0.69
Caregiver has hired someone to assist with caring for patient on hospice^a
Yes	82 (21.13%)	4 (10.81%)	78 (22.22%)	0.11
Length of time caregiver has cared for patient on hospice^a,d
Less than one year	87 (27.62%)	33 (25.58%)	54 (29.03%)	0.11
One year to less than three years	76 (24.13%)	25 (19.38%)	51 (27.42%)
Three years or more	152 (48.25%)	71 (55.04%)	81 (43.09%)
Average number of hours a week caregiver cares for patient on hospice^a,d
Less than five hours a week	19 (5.99%)	8 (6.20%)	11 (5.85%)	0.24
5–10 hours a week	38 (11.99%)	11 (8.53%)	27 (14.36%)
11–20 hours a week	36 (11.36%)	12 (9.30%)	24 (12.77%)
More than 20 hours a week	220 (69.40%)	95 (73.64%)	125 (66.49%)
Caregiver administers patient's medications^c
Yes	220 (56.85%)	22 (59.46%)	198 (56.57%)	0.74
Length of time caregiver has administered patient's medications^c
From one day to six months	135 (62.50%)	12 (57.14%)	123 (63.08%)	0.84
Six months to a year	24 (11.11%)	3 (14.29%)	21 (10.77%)
For more than a year	57 (26.39%)	6 (28.57%)	51 (26.15%)
Patient age in years mean (std)	72.30 (14.10)	70.86 (11.83)	72.45 (14.34)	0.52
Patient gender
Female	347 (49.29%)	87 (52.41%)	260 (48.33%)	0.36
Patient race
Black/African American	159 (22.61%)	157 (96.91%)	2 (0.38%)	<0.0001
White/Caucasian	535 (77.09%)	5 (3.09%)	530 (99.62%)	<0.0001
Patient ethnicity
Hispanic, Spanish, or Latino: Yes	16 (2.29%)	6 (3.70%)	10 (1.86%)	0.23^e
Patient marital status
Single, never married, not partnered	76 (10.87%)	29 (17.58%)	47 (8.80%)	0.0002
Married/partnered	289 (41.34%)	49 (29.70%)	240 (44.94%)
Divorced/separated	235 (33.62%)	55 (33.33%)	180 (33.71%)
Widowed	99 (14.16%)	32 (19.39%)	67 (12.52%)
Patient residence
Private home residence, adult group home	577 (82.08%)	146 (87.95%)	431 (80.26%)	0.04
Assisted living, nursing home, or skilled nursing facility	92 (13.09%)	17 (10.24%)	75 (13.97%)
Other	34 (4.84%)	3 (1.81%)	31 (5.77%)
Patient highest level of education^c
Less than high school	48 (12.60%)	2 (5.56%)	46 (13.33%)	0.004 ^e
High school/GED	149 (39.11%)	24 (66.67%)	125 (36.23%)
Some college/trade school	106 (27.82%)	9 (25.00%)	97 (28.12%)
Bachelor's/undergraduate degree	47 (12.34%)	1 (2.78%)	46 (13.33%)
Graduate/professional degree	31 (8.14%)	0 (0.0%)	31 (8.99%)
Patient primary diagnosis
Cancer	26 (20%)	8 (14.81%)	18 (23.68%)	0.48^e
Other	20 (15.38%)	9 (16.67%)	11 (14.47%)
I don't know	84 (64.62%)	37 (68.52%)	47 (61.84%)
Patient dementia status^d
Yes	20 (14.39%)	9 (15.52%)	11 (13.58%)	0.94
No	26 (18.71%)	11 (18.97%)	15 (18.52%)
I don't know	93 (66.91%)	38 (65.52%)	55 (67.90%)

Bold indicates statistical significance take at < 0.05.

Participants who declined to answer or were missing data for this variable were not included in the statistical test.

Participants who declined to answer, answered “other” (a small subset), or were missing data were not included in the statistical test.

Data available only in one of the two datasets, the ACCESS study.

Data available only in one of the two datasets, the PISCES study.

Analyzed using Fisher's exact test.

Continuous variables were analyzed using a two-sided t-test. Except for variables noted for being analyzed with Fisher's exact test, categorical variables were analyzed using a chi-square test.

ACCESS, Access for Cancer Caregivers for Education and Support for Shared Decision Making; PISCES, Problem-Solving Intervention for Hospice Caregivers; std, standard.

Demographic differences among Black and White hospice family caregivers

When comparing Black and White hospice family caregivers, the sample differed across numerous demographic variables but was similar in terms of caregiving responsibilities. Specifically, the groups differed by caregiver gender (p = 0.006), with more White men providing care than Black men; caregiver marital status, with more White caregivers being married or partnered than Black caregivers (71.7% vs. 39.8%, p < 0.0001), and caregiver education level, with more Black caregivers having a high school education/GED or less than White caregivers (30.7% vs. 20.1%, p = 0.002), and more White caregivers than Black caregivers having a bachelor's degree or graduate/professional degree (48.4% vs. 30.7%, p = 0.002).

Caregivers also differed by race in annual household income, with a higher proportion of Black caregivers making <$20,000/year than White caregivers (31.4% vs. 11.5%, p = 0.0003), and a higher proportion of White caregivers making >$70,000/year compared with Black caregivers (40.8% vs. 8.6%, p = 0.0003). Although caregivers in both groups were likely to be an adult child caring for a dying parent (52.4% Black caregivers vs. 46.4% White caregivers, p = 0.002), White caregivers were more likely to be a spouse or partner (33.9% vs. 18.7%, p = 0.002) and less likely than Black caregivers to be a sibling (4.3% vs. 8.4%, p = 0.002).

Caregivers also differed by race in their geographic location (p < 0.0001). Although caregivers did not differ in employment status, they reported differences in employment-related changes due to caregiving. White caregivers were more likely to report no job-related changes due to caregiving compared with Black caregivers (31.7% vs. 17.0%, p = 0.02), whereas higher proportions of Black caregivers reported reduced work hours or quitting, taking a leave of absence to provide care, or using sick leave to provide care.

Where patients lived also differed by race, with a higher proportion of Black patients living in private residences or group homes than White patients (88.0% vs. 80.36%, p = 0.04). Groups of caregivers did not differ in how long they had been caring for a loved one on hospice, the average number of hours a week they provide care, or their role in administering medications.

Anxiety

In bivariate analysis, Black (6.8 mean, 5.68 standard [std]) and White (7.67 mean, 5.55 std) hospice family caregivers did not differ in mean GAD-7 anxiety scores (p = 0.08), nor did they differ in anxiety severity (p = 0.06) (Table 2). Almost one-third of Black and White caregivers reported moderate-to-severe anxiety symptoms (30.1% and 32.8%, respectively). In adjusted analyses, we found no significant difference in GAD-7 scores between racial groups after adjusting for variables describing patient/caregiver characteristics and the caregiver relationship (estimate = 0.2725, p = 0.62, R² = 15.69%, numerator df = 10, denominator df = 651).

Table 2.

Comparison of Anxiety, Depression, Quality of Life, and Caregiver Perceptions of Hospice Communication among Hospice Family Caregivers by Race

Instrument	Total sample n = 722 Mean (std) and median	Black hospice family caregivers n = 176 (24.37%) Mean (std)	White hospice family caregivers n = 546 (75.63%) Mean (std)	p
Anxiety (GAD-7)	7.46 (5.59) and 6.0 n = 679	6.8 (5.68) n = 163	7.67 (5.55) n = 516	0.08
Anxiety severity %	n = 679	n = 122	n = 455	0.06
None (0)	8.10%	12.88%	6.59%
Minimal (1–4)	29.01%	31.29%	28.29%
Mild (5–9)	30.78%	25.77%	32.36%
Moderate (10–14)	17.97%	15.34%	18.80%
Severe (≥15)	14.14%	14.72%	13.95%
Depression (PHQ-9)	7.38 (5.90) and 6.0 n = 679	7.26 (5.91) n = 162	7.42 (5.91) n = 517	0.76
Depression severity %	n = 679	n = 162	n = 517	0.92
None (0)	6.48%	8.02%	6%
Minimal (1–4)	34.02%	32.72%	34.43%
Mild (5–9)	27.54%	27.78%	27.47%
Moderate (10–14)	17.67%	16.05%	18.18%
Moderately severe (15–19)	9.43%	10.49%	9.09%
Severe (20–27)	4.86%	4.94%	4.84%
QOL overall (CQLI-R)	26.81 (8.28) and 28.0 n = 692	27.98 (8.0) n = 166	26.45 (8.34) n = 526	0.04
QOL emotional	6.88 (2.35) and 7.0 n = 698	7.24 (2.38) n = 166	6.76 (2.33) n = 532	0.02
QOL social	6.66 (2.84) and 7.0 n = 699	7.33 (2.70) n = 166	6.45 (2.85) n = 533	0.0005
QOL financial	6.63 (2.76) and 7.0 n = 693	6.57 (2.70) n = 166	6.65 (2.78) n = 527	0.73
QOL physical	6.58 (2.29) and 7.0 n = 699	6.84 (2.21) n = 166	6.49 (2.22) n = 533	0.08
CCCQ	119.49 and 120.0 n = 480	123.08 (23.10) n = 110	118.4 (22.87) n = 360	0.06
Caregiver burden (brief version of the ZBI-7)^a	11.71 (6.60) and 11.0 n = 175	11.05 (7.07)	11.78 (6.57)	0.67

Bold indicates statistical significance take at < 0.05.

Available only in the ACCESS dataset.

CCCQ, Caregiver-Centered Communication Questionnaire; CQLI-R, Caregiver Quality-of-Life Index–Revised; GAD-7, Generalized Anxiety Disorder-7; PHQ-9, Patient Health Questionnaire 9-item; QOL, quality of life; ZBI-7, Zarit Burden Interview.

Depression

In bivariate analysis, Black (7.26 mean, 5.91 std) and White (7.42 mean, 5.91 std) hospice family caregivers did not differ in mean PHQ-9 depression scores (p = 0.76), nor did they differ in depression severity (p = 0.92) (Table 2). Almost one-third of Black and White caregivers reported moderate-to-severe depression symptoms (31.5% and 32.11%, respectively). In adjusted analyses, we found no significant difference in PHQ-9 scores between racial groups after adjusting for variables describing patient/caregiver characteristics and the caregiver relationship (estimate = 0.2995, p = 0.61, R² = 11.06%, numerator df = 10, denominator df = 651).

Quality of life

In bivariate analysis, Black (27.98 mean, 8.0 std) and White (26.45 mean, 8.34 std) hospice family caregivers significantly differed in mean total CQLI-R QOL scores (p = 0.04), with White caregivers reporting lower QOL overall (Table 2). Specifically, the groups differed in two of the four subcategories of the instrument: emotional QOL (p = 0.02) and social QOL (p = 0.0005).

White caregivers reported lower emotional QOL (6.76 mean, 2.33 std) than Black caregivers (7.24 mean, 2.38 std) and lower social QOL (6.45 mean, 2.85 std) than Black caregivers (7.33 mean, 2.70 std). Financial QOL (p = 0.73) and physical QOL (p = 0.08) did not differ between the groups. In adjusted analyses, we found no significant difference in CQLI-R scores between racial groups after adjusting for variables describing patient/caregiver characteristics and the caregiver relationship (estimate = 0.3699, p = 0.65, R² = 14.45%, numerator df = 10, denominator df = 662).

Caregiver burden

In bivariate analysis, Black caregivers (11.05 mean, 7.07 std) and White (11.78 mean, 6.57 std) caregivers did not differ in mean ZBI-7 scores (p = 0.67) (Table 2). In adjusted analyses, we found no significant difference in ZBI-7 scores between these groups of caregivers after adjusting for variables describing patient/caregiver characteristics and the caregiver relationship (estimate = 0.75, p = 0.68, R² = 14.59%, numerator df = 9, denominator df = 155). Sample size was smaller for this instrument because ZBI-7 scores were only available in the ACCESS dataset.

Perceptions of caregiver-centered hospice communication

In bivariate analysis, Black (123.08 mean, 23.10 std) and White (118.4 mean, 22.87 std) caregiver perceptions of caregiver-centered hospice communication did not differ in mean CCCQ scores (p = 0.06) (Table 2). In adjusted analyses, we found no significant difference in CCCQ scores between racial groups after adjusting for variables describing patient/caregiver characteristics and the caregiver relationship (estimate = 2.30, p = 0.41, R² = 10.12%, numerator df = 10, denominator df = 449).

Discussion

In this study of 722 hospice family caregivers, we found significant demographic differences between Black and White caregivers. Compared with White caregivers, greater proportions of Black caregivers were unmarried, had less formal education, had lower household income (with almost a third making <$20,000 a year), and endured employment-related changes due to caregiving that likely reduced income, factors previous research has associated with poorer QOL among caregivers.^64,65

At the same time, Black and White caregivers did not differ in the time they spent caregiving or tasks of caregiving. Despite these findings, Black caregivers in our study were not more likely to experience lower QOL (including in the financial domain) or greater anxiety, depression, or caregiver burden compared with White caregivers. In bivariate analysis, we found White caregivers reported lower QOL overall, specifically in the domains of emotional QOL and social QOL, but differences were not observed after controlling for relevant variables.

Although an estimated 2.7% of adults in the United States experience generalized anxiety disorder,⁶⁶ our study found 32.1% of hospice family caregivers reported moderate-to-severe anxiety symptoms, consistent with a previous study's results.⁵ And compared with the 8% of U.S. adults age ≥20 who have depression,⁶⁷ our study found 32.0% of hospice family caregivers reported moderate-to-severe depression symptoms, which is higher than a previous study's finding of 23.3%.⁵ Our results show that hospice family caregivers across racial groups experience high levels of strain, and add to growing evidence that hospice family caregivers would benefit from interventions that support mental health, improve QOL, and reduce burdens associated with caregiving.^{7,11,12,54,68–70}

It is unclear why, despite lower socioeconomic status and greater prevalence of employment changes associated with caregiving, Black caregivers did not report higher levels of anxiety, depression, or caregiver burden or lower QOL than White caregivers. Moderate R² values in multiple regression analyses suggest that factors not measured in our study may better predict outcomes and enable us to differentiate between the experiences of Black and White caregivers. Although not analyzed in our study, it is possible that social and cultural values or practices in Black communities may mediate experiences or perceptions of burden, anxiety, and depression.⁶⁹

In one study of Black caregivers of a dying family member, researchers found that the patient–caregiver relationship was the basis of the caregiving experience—with honoring promises, valuing the relationship over personal costs, and experiencing a depth of positive and negative emotional feelings (without seeking mental health support) as part of the role of caregiver.⁷¹

In qualitative studies, Black caregivers were reticent to describe caregiving burdens as costs, citing disrespect to their dying loved one, and reframed caregiving “costs” as reciprocity, repayment, or paying debts for the love and care given in life by their loved one.^71,72 Other studies highlight Black caregivers' greater sense of familial obligation and reliance on faith in caring for a loved one with advanced illness compared with White caregivers.^52,69,72

Familial obligation, which has been found to be correlated with positive appraisal of caregiving⁷³ and acts as a modifier to perceptions of the caregiving experience,⁷³ may help explain our findings. Social support and faith/spiritual coping, an internal resource more common among Black caregivers, have similarly been found to positively influence beliefs and perceptions of caregiving, modifying caregiver mental health.^51,74 Research is needed to understand which aspects of Black culture and perceptions of caregiving help mediate the effects of socioeconomic stressors and social determinants of caregiver health on mental health outcomes of Black hospice family caregivers.

Although aspects of Black culture may help explain racially similar perceptions of caregiver burden and other outcomes despite disparities in socioeconomic supports, it is also possible the commonly used instruments in our study do not adequately capture Black caregivers' experiences. The PHQ-9 has been validated among Black patient populations,^58,75,76 and confirmatory factor analysis of the 3-item ZBI-7 has been completed among Black and White dementia caregivers,⁷⁷ but the GAD-7, CQLI-R, and CCCQ have not yet been validated specifically among Black caregivers.

For example, despite widespread use of the GAD-7, a tool developed and validated using an 80% non-Hispanic White sample, one study found Black participants with high generalized anxiety disorder symptoms scored lower on the GAD-7 than other participants with similar symptoms, suggesting that the GAD-7 is less effective at detecting anxiety symptoms in Black participants.⁷⁸ This finding implies that there may be a higher prevalence of Black hospice family caregivers experiencing anxiety than our results indicate. Research is needed to develop culture-concordant mental health screening tools and validate these tools among Black caregivers, so that variations in content interpretation do not result in a failure to effectively diagnose or treat vulnerable caregivers.^77–79

Racial disparities in health care communication quality are well documented,^80–85 except in hospice where Black hospice caregivers have reported slightly better hospice team communication than White caregivers.⁸⁶ In our study, Black and White hospice family caregivers similarly rated caregiver-centered hospice communication. Our finding adds to growing evidence that hospice teams communicate in ways that meet family caregivers' needs regardless of caregiver race. Racial equality in health care communication, particularly among those caring for vulnerable persons near end of life, is essential. Qualitative research is needed to understand how hospice communication may mediate racial disparities and if hospice communication in particular moderates caregiver anxiety, depression, and QOL.²³

This study has three limitations. First, as a secondary analysis we were unable to control for caregiver health and comorbidities, social support, perceptions of racism in health care, use of mental health resources, religious coping, and other social and cultural factors that may have influenced results. Second, our study focuses on race, a social construct that alone cannot explain or predict caregiver outcomes.

Although Black persons as a group may experience shared social, cultural, and political experiences, marginalization, and socioeconomic correlates such as education and income levels, as with White persons no individual person can be viewed or understood exclusively through their group associations. Third, our study used instruments that, like many health tools, have not yet been validated among Black populations. Future research on hospice family caregivers would benefit from more improved measurement strategies and incorporation of socioeconomic and cultural factors.

Conclusion

In this study of Black and White hospice family caregivers, we found socioeconomic differences between racial groups, but in adjusted analyses no differences in anxiety or depression symptoms, QOL, caregiver burden, or perceptions of hospice communication were found. The prevalences of anxiety, depression, and burden were high across racial groups, suggesting that hospice family caregivers require greater support. To improve the well-being of family caregivers, intervention research that incorporates culture-concordant instruments and advances our understanding of how to support hospice family caregivers across races is needed. Research is also needed to understand which factors contribute to hospice caregiver coping and communication experiences.

Footnotes

Disclaimer

The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Funding Information

Data analyzed in this study were collected from clinical trial NCT03712410 (PISCES: A Problem-Solving Intervention for Hospice Caregivers) and from clinical trial NCT02929108 (ACCESS: Access for Cancer Caregivers for Education and Support for Shared Decision Making). Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under award no. 2R01NR012213. Research reported in this publication was supported by the National Cancer Institute of the National Institutes of Health under award no. 7R01CA203999. In addition, L.T.S. is supported by the Ruth L. Kirschstein National Research Service Award training program in Individualized Care for At Risk Older Adults at the University of Pennsylvania, National Institute of Nursing Research (T32NR009356). K.B. is supported by the U.S. Department of Health and Human Services—Health Resources and Services Administration (HRSA) under award no. M01HP312740100.

Author Disclosure Statement

No competing financial interests exist.

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