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Article

Spouse cancer caregivers’ burden and distress at entry to home hospice: The role of relationship quality

Maija Reblin1, Gary Donaldson1, Lee Ellington1, Kathi Mooney1, Michael Caserta1, and Dale Lund2

Abstract High-quality relationships may be protective for family caregivers. This study focuses on relationship quality categories (supportive and ambivalent) in spouse caregivers in cancer home hospice. The goals of this article are to, first, describe relationship quality categories among end-of-life caregivers and, second, test the effects of relationship quality categories on caregiver burden and distress within a stress process model. Using questionnaire data collected at entry to home hospice, we found relationship quality categories were proportionally similar to those seen in noncaregiver older adults. Relationship quality significantly predicted caregiver burden, which completely mediated the relationship between caregiver relationship quality and distress. Care- givers whose social contexts place them at risk for greater distress may benefit from increased clinical attention or intervention.

Keywords Burden, cancer, caregiving, distress, end of life, relationship quality

1 University of Utah, USA 2 California State University, San Bernardino, USA

Corresponding author:

Maija Reblin, Huntsman Cancer Institute Investigator, College of Nursing, University of Utah, 10 S 2000 E,

Salt Lake City, UT 84112, USA.

Email: [email protected]

J S P R

Journal of Social and Personal Relationships

2016, Vol. 33(5) 666–686 ª The Author(s) 2015

Reprints and permissions: sagepub.co.uk/journalsPermissions.nav

DOI: 10.1177/0265407515588220 spr.sagepub.com

Despite a 5-year, 68% relative survival rate for cancer, and improvements in screening,

detection, and treatment, the lifetime likelihood of developing this disease is one in two

for men and one in three for women. Cancer is still the second most common cause of

death in the U.S. (American Cancer Society, 2014). Cancer impacts not only those

diagnosed but also family members, especially those who become caregivers

(Hagedoorn, Sanderman, Bolks, Tuinstra, & Coyne, 2008; Mitschke, 2008; Resendes &

McCorkle, 2006). Although many benefit from and are able to find meaning in providing

care (Hasson-Ohayon et al., 2013; Kim, Carver, Deci, & Kasser, 2008), care provision

has been recognized as stressful both emotionally and physically (Chentsova-Dutton

et al., 2000; Girgis, Lambert, Johnson, Waller, & Currow, 2013; Haley, LaMonde,

Han, Narramore, & Schonwetter, 2001; Romito, Goldzweig, Cormio, Hagedoorn, &

Andersen, 2013) and is linked to higher incidences of anxiety and depression, weakened

immune responses, a greater likelihood of long-term medical problems, and higher

mortality rates (Chentsova-Dutton et al., 2000; Decker & Young, 1991; Grunfeld et al.,

2004; Hebert, Arnold, & Schulz, 2007; Schulz & Beach, 1999; U.S. Department of

Health and Human Services Office on Women’s Health, 2011). Family caregivers of

patients with advanced cancer are at even greater risk for adverse outcomes based on

heightened emotional concerns and increased need for physical care for patients in

advanced stages of the disease (Kissane, Bloch, Burns, McKenzie, & Posterino, 1994;

Kurtz, Given, Kurtz, & Given, 1994).

Relationship quality as a factor for caregiver health outcomes

Because not all caregivers experience negative health effects from providing care, other

factors are likely at play. High-quality relationships have been linked to improved health

outcomes in the general population (Uchino, Holt-Lunstad, Uno, Campo, & Reblin,

2007). Specifically, supportive relationships have been shown to ameliorate the specific

health risk factors associated with caregiving and to improve stress response and psy-

chological and physical outcomes, including depression, immune function, and all-cause

mortality (Berkman, Glass, Brissette, & Seeman, 2000; Cohen, 1988; Uchino, 2004;

Uchino, Kiecolt-Glaser, & Cacioppo, 1994), consistent with the buffering hypothesis

(Cohen & Wills, 1985). High-quality relationships have also been linked to better care

provision and patient outcomes (Williamson & Shaffer, 2000). Taken together, this

research suggests the importance of considering the role of relationship quality when

investigating caregiver health at end of life.

Despite these promising links, the impact of relationship quality at end of life has not

been fully explored (Stajduhar et al., 2010). Research showing that spouses are often a

primary source of an individual’s support and that existing interaction patterns are

carried into periods of caregiving (Family Caregiver Alliance, 2012; Fromme et al.,

2005; Salmon et al., 2003) suggests that a supportive spousal relationship would be

beneficial during caregiving. However, the added complexity of the spouse’s impending

death may complicate outcomes (McLean & Jones, 2007). Some research from the

perspective of cancer patients on the role of relationship quality has been conducted

(Ballantyne, 2004; Manne & Glassman, 2000; Manne, Pape, Taylor, & Dougherty,

1999), but the effects of relationship quality from the perspective of cancer caregivers

Reblin et al. 667

has been understudied. Within the limited research that has been done on relationship

quality at end of life, findings have been mixed in terms of the potential benefit of high-

quality relationships. For example, one study on caregivers of patients with late-stage

cancer found little evidence for caregiver–patient relationship quality influencing

caregiver burden; however, researchers did find that caregivers’ high-quality relation-

ships with other social ties alleviated burden (Francis, Worthington, Kypriotakis, &

Rose, 2010). In contrast, other research found that caregiver–patient relationship quality

was the critical element in predicting caregiver burden and satisfaction (Snyder, 2000).

Measurement of relationship quality

Mixed findings regarding the role of relationship quality may be due to the different

operationalizations of the concept across and even within studies (Francis et al., 2010;

Holt-Lunstad, Smith, & Layton, 2010; Wittenberg-Lyles, Washington, Demiris,

Oliver, & Shaunfield, 2014). To obtain a clearer and more accurate pattern of results,

some researchers have suggested that the assessment of relationship quality should be

more finely grained than common unidimensional measures (Holt-Lunstad et al.,

2010). Positive and negative aspects of relationships have been found to be separable

dimensions (Finch, Okun, Barrera, Zautra, & Reich, 1989; Fiore, Becker, & Coppel,

1983) and hence can co-occur. By using multidimensional assessment, we can identify

two different relationship types commonly seen in close relationships (Campo et al.,

2009; Vaughn & Reblin, 2010) that previously would have been seen as the same type

of high-quality relationship.

As seen in Figure 1, a supportive relationship is one perceived to have high posi-

tivity and low negativity or very helpful when one is in need of support and not at all

upsetting. An ambivalent relationship is also perceived to have high positivity or seen

as helpful when support is needed. It also involves the co-occurrence of high negativity

and is perceived as somewhat upsetting. Although both supportive and ambivalent

Figure 1. Relationships in two dimensions. Adapted from ‘‘Heterogeneity in the social networks of young and older adults: Prediction of mental health and cardiovascular reactivity during acute stress,’’ by Uchino, B. N., Holt-Lunstad, J., Uno, D., and Flinders, J. B., 2001, Journal of Behavioral Medicine, 24, 361–382.

668 Journal of Social and Personal Relationships 33(5)

relationships have high positivity, the concurrent high levels of negativity in

ambivalent relationships appear to have unique, detrimental influences on health

outcomes (Uchino, 2004; Uchino et al., 2007). Also included in Figure 1 are indifferent

and aversive relationships. Indifferent ties tend to be less important members of our

social networks. Contact is often minimized with aversive ties (Uchino, Holt-Lunstad,

Uno, & Flinders, 2001). Thus, neither is frequently seen in close relationships such as

among spouses (Campo et al., 2009; Vaughn & Reblin, 2010), making them outside the

scope of the current study. We propose to use this multidimensional framework to

describe ambivalent and supportive relationships at the end of life and to test the

effects of caregiver relationship quality categories on burden and distress (specifically

anxiety and burden).

Objective 1: Describing relationships at end of life

Even though one might expect higher relationship quality among spouses maintaining

a relationship into old age (Levenson, Carstensen, & Gottman, 1993), ambivalent

relationships in spouses are prevalent in the broader population (Campo et al., 2009;

Uchino et al., 2013), and previous research suggests that relationship quality tends to

be relatively stable over time (Campo et al., 2009; Vaughn & Reblin, 2010). Addi-

tionally, obligation may keep spouses with higher levels of negativity together at end

of life (Feinberg, Wolkwitz, & Goldstein, 2006; Neufeld & Harrison, 1998). The

existing relationship quality, along with its history of conflict (Kramer, Kavanaugh,

Trentham-Dietz, Walsh, & Yonker, 2010) and the impact of caregiving itself on the

relationship (Lawrence, Tennstedt, & Assmann, 1998; Walker, Shin, & Bird, 1990)

builds a social environment that can have implications for caregivers’ ongoing inter-

actions and their psychological health. However, to our knowledge, there have been

no studies to date describing relationship quality using both positive and negative

dimensions in couples at end of life. Therefore, the first objective of this research was

to determine the presence of perceived supportive and ambivalent relationships of

home hospice cancer spouse caregivers.

Objective 2: Testing effects of relationship quality on psychological health

Pearlin, Mullan, Semple, and Skaff (1990) have proposed a conceptual model of

caregiving as a stress process that outlines the interrelationships of domains of factors

pertaining to caregiver stress. As seen in Figure 2, we have adapted this model to test

how relationship quality, along with the covariates of caregiver sex and relationship

length, as contextual factors, impacts caregivers’ psychological health outcomes—

specifically caregiver anxiety and depression, with possible mediation through stress,

as measured by caregiver burden. For the purposes of this preliminary test of rela-

tionship quality, we did not include other mediators.

Despite the lack of research focusing specifically on spouse caregiver’s supportive

and ambivalent relationship quality and psychological health at end of life, we can

extrapolate potential effects from research on the broader population. Thus, we

hypothesize that the protective effects of supportive relationships and the deleterious

Reblin et al. 669

effects of ambivalent relationships on psychological health carry through to this

stage of life. However, because of the complexity of relationships at end of life, the

expected outcomes may be reversed. For instance, the traditional viewpoint suggests

spouse caregivers with supportive relationships may find more meaning in providing

support through death (Li & Loke, 2013), reducing feelings of burden and protecting

against anxiety and depression in this group. A contrasting viewpoint would suggest

spouse caregivers with supportive relationships may be more adversely affected by the

suffering of their dying partners (Monin & Schulz, 2009), increasing feelings of burden,

anxiety, and depression. Because of this conflicting evidence, beyond describing the types

of relationships found at end of life, the second objective of this study was to assess how

relationship quality affects spouse cancer caregiver burden, anxiety, and depression upon

entry to home hospice care. We hypothesized that, controlling for caregiver sex and

length of relationship, relationship quality category (supportive or ambivalent) would

significantly predict caregiver burden, anxiety, and depression at entry to home hospice.

Method

Cancer patients and their self-identified spouse caregivers were recruited upon enrollment

to home hospice care as part of an ongoing larger study, Partners in Hospice Care

(P01CA138317; PI Mooney). Within 1 week of enrollment, caregivers completed demo-

graphic information and questionnaires to assess co-occurring positive and negative rela-

tionship quality (Social Relationships Index [SRI]; Campo et al., 2009), anxiety (Hospital

Anxiety and Depression Scale [HADS]; Zigmond & Snaith, 1983), depression (Geriatric

Depression Scale–Short Form [GDS-SF]; Sheikh & Yesavage, 1986), and burden (Care-

giver Reaction Assessment [CRA]; C. Given et al., 1992). This study was approved by the

University Institutional Review Board and hospice administrators.

Participants

This subsample included 131 caregivers who were enrolled in the larger study and who

completed questionnaires at enrollment. In our sample, all couples were heterosexual

Figure 2. Conceptual model. Adapted from ‘‘Caregiving and the stress process: An overview of concepts and their measures,’’ by Pearlin, L. I., Mullan, J. T., Semple, S. J., and Skaff, M. M., 1990, Gerontologist, 30, 583–594.

670 Journal of Social and Personal Relationships 33(5)

and were either married or living as married. Participants were from 10 hospice agencies

located in three metropolitan areas in the U.S., representing the Midwest, the Inter-

mountain West, and the Northeast. A priori power calculations indicated that a sample of

this size would generate excellent precision of estimation, achieving a power of 0.95.

Eligibility criteria for the larger study (and therefore this sample) included adult family

self-identified caregivers of patients with a histological diagnosis of cancer admitted to a

participating home care hospice program. Other criteria included English speaking/

writing, daily access to a telephone, assignment to a participating hospice nurse, and

cognitive and physical ability to participate.

Measures

A demographic questionnaire, including assessment of patient and caregiver age, sex,

and length of relationship, was completed at enrollment.

The SRI (Campo et al., 2009) was used to assess caregiver perception of relation-

ship quality. In this scale, caregivers rate their relationships in terms of how helpful and

upsetting they saw their partner to be (1 ¼ not at all, 6 ¼ extremely). The SRI also

includes a measure of importance of the relationship (1 ¼ not at all, 6 ¼ extremely).

Helpful (positivity) and upsetting (negativity) scores are then used to assign a rela-

tionship type. A supportive relationship is defined as one with positivity rated as 2 or

greater and negativity of 1 (at least a little helpful and not at all upsetting). An

ambivalent relationship is defined as one with both positivity and negativity rated as 2

or greater (at least a little helpful and at least a little upsetting). Relationship categories

defined using these absolute cutoffs are used within this analysis for consistency with

our model (i.e., focus on the presence or absence of positivity/negativity) and for

consistency with prior research to make comparisons with broader, noncaregiving

populations. The SRI has a two-factor structure (i.e., positivity and negativity) and

good psychometric properties including convergent and divergent validity and test–retest

reliability (Campo et al., 2009). Relationship categories also show good predictive

validity on psychological well-being and physical health outcomes (e.g., Holt-Lunstad,

Uchino, Smith, Olsen-Cerny, & Nealey-Moore, 2003; Uchino et al., 2001).

Caregiver burden was assessed with the 24-item, 5-subscale CRA (C. Given et al.,

1992). The five subscales include caregiver self-esteem (e.g., ‘‘Caring for my spouse

makes me feel good’’), burden from lack of family support (e.g., ‘‘It is very difficult to

get help from my family in taking care of my spouse’’), financial burden (e.g., ‘‘It’s

difficult to pay for my spouse’s health needs and services’’), scheduling burden (e.g.,

‘‘My activities are centered around care for my spouse’’), and health burden (e.g., ‘‘My

health has gotten worse since I’ve been caring for my spouse’’). This instrument has

well-documented validity and reliability (B. Given & Given, 1992; B. Given et al., 2004;

C. Given et al., 1992; Nijboer et al., 2000; Stommel, Wang, Given, & Given, 1992). In

the current study, Cronbach’s a was .74. Mean scores were calculated for each subscale.

The HADS anxiety subscale (Zigmond & Snaith, 1983) was used to measure self-

reported caregiver anxiety. This 7-item scale has been found to perform well as a test

for such symptoms in caregivers of cancer patients, including at end of life (Gough &

Hudson, 2009; Lambert, Pallant, & Girgis, 2011). This scale has good screening

Reblin et al. 671

properties (specificity of 0.78 and sensitivity of 0.9). A summed score of greater than

8 is an established cutoff for anxiety in the general population, with a score of 11 or

greater defined as clinically abnormal (Bjelland, Dahl, Haug, & Neckelmann, 2002).

The Cronbach’s a for this scale in the current study was .88.

Caregiver depression was assessed using the GDS-SF (Sheikh & Yesavage, 1986), a

15-item version of the longer GDS. The short version was developed with items that

produced the greatest item–total correlations and is as effective as the longer form in

discriminating depressed from nondepressed older adults (r ¼ 0.84). Summed scores

greater than 5 are suggestive of depression, and scores greater than 10 almost always

indicate depression (Sheikh & Yesavage, 1986; Yesavage et al., 1982). In the current

study, Cronbach’s a was .83.

Analysis

Descriptive statistics, independent t, and w2 tests were used to describe and compare

caregiver supportive and ambivalent relationships. Maximum likelihood structural

equation modeling in MPlus software was used to determine the relationships between

measured variables of anxiety, depression, and relationship quality and the latent vari-

able of burden, controlling for caregiver gender, and length of relationship. Based on the

conceptual model outlined by Pearlin et al. (1990), as well as the broader research lit-

erature, we proposed a model in which contextual variables, specifically relationship

quality, would predict outcome variables of caregiver state depression and anxiety

(where depression and anxiety were correlated with each other), with potential mediation

through stress variables, as measured by caregiver burden. We hypothesized that, con-

trolling for caregiver sex and length of relationship, relationship quality category

(supportive or ambivalent) would significantly predict caregiver burden, anxiety, and

depression at entry to home hospice. Both indirect and direct relationships can be tested

using structural equation modeling, making it possible to identify possible mediation of

burden between relationship quality, anxiety, and depression.

Results

Demographics

All demographics and questionnaire means for the overall sample and split between

ambivalent and supportive groups are presented in Table 1. Caregivers were 92% White and 35% male. Caregivers were, on average, 65 years old (SD ¼ 10.74), and

patients were, on average, 68 years (SD¼ 11.27). Couples were married or coresiding a

mean of 35.9 years (SD ¼ 17.76). Most caregivers were relatively well educated (over

75% had at least some college) but had a wide range in income. Caregivers reported

high levels of anxiety and depression. The mean anxiety score was 9.89 (SD ¼ 2.41),

and most caregivers fell between the established cutoff for anxiety in the general

population (HADS score of 8) and the score defined as clinically anxious (HADS score

of 11). The mean depression score was 5.49 (SD ¼ 2.55), which falls above the score

suggestive of depression (GDS score of 5).

672 Journal of Social and Personal Relationships 33(5)

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673

Forty-one caregivers saw their partner as supportive (31%), and 90 saw their partner

as ambivalent (69%). Both groups on average rated their relationship with their spouse

as highly important (of 6 possible; supportive M ¼ 5.97, SD ¼ 0.16; ambivalent M ¼ 5.78, SD ¼ 0.49) and highly positive (of 6 possible; supportive M ¼ 5.85, SD ¼ 0.36;

ambivalent M ¼ 5.02, SD ¼ 1.07). The mean negativity rating in the ambivalent group

was 3.10 (SD ¼ 1.32; by definition, the mean supportive group negativity is 1.00,

SD ¼ 0). Chi-square and t-test analyses comparing groups showed no significant

differences in education, income, patient and caregiver age, or length of relationship

between supportive and ambivalent groups (p > .05).

Factor structure of caregiver reaction assessment

A latent variable for burden was created using the CRA subscale scores: family support,

self-esteem, financial, scheduling, and health. We tested this factor structure using

confirmatory factor analysis in MPlus software. Based on the published work on the

scale (B. Given & Given, 1992; B. Given et al., 2004; C. Given et al., 1992; Nijboer

et al., 2000; Stommel et al., 1992), a one-factor solution was proposed using a marker

variable strategy (family support was fixed to 1) with uncorrelated errors. Analyses

found the model fit was poor (w2 ¼ 20.734, degree of freedom (df) ¼ 5, p < .01; root

mean square error of approximation (RMSEA) ¼ 0.152; standardized root mean square

residual (SRMR) ¼ 0.060). Although the fit is not within the acceptable range, these

findings are consistent with previous research that found better solutions than the

accepted five-factor model (Grov, Fossa, Tonnessen, & Dahl, 2006). Additionally, there

is some evidence that fit indices do not perform well in models with a small df (Kenny,

Kaniskan, & McCoach, in press). Given the factor model is well established, we used this

factor structure in the overall structural model.

Overall model estimation

Maximum likelihood estimation was employed to estimate the overall structural

model fit. Based on data from 131 individuals (41 supportive and 90 ambivalent),

model fit was acceptable (w2 ¼ 48.059, df ¼ 25, p ¼ .0037; RMSEA ¼ 0.084;

SRMR ¼ 0.056). The final model results with estimated betas and standard errors are

presented in Figure 3 (circles represent latent variables and rectangles represent

measured variables). The absence of a line connecting the variables implies no

hypothesized direct effect. Using caregiver family support as a marker variable,

burden subscales significantly mapped onto the latent variable of caregiver burden

(p < .01). As expected, all loadings were positive, with the exception of caregiver

self-esteem, which has an inverse relationship to the other subscales.

Controlling for caregiver sex and relationship length, relationship quality signifi-

cantly predicted burden (B ¼ �0.229, SE ¼ 0.077, p < .01) but not anxiety (p ¼ .899)

or depression (p ¼ .536). Although there was no significant difference between those

with supportive and ambivalent relationships in financial burden (p > .05), caregivers

with supportive spousal relationships had significantly higher caregiver self-esteem

(t ¼ �2.096, df ¼ 129, p < .05), significantly lower burden from scheduling

674 Journal of Social and Personal Relationships 33(5)

(t ¼ 2.750, df ¼ 129, p < .01), health (t ¼ 2.980, df ¼ 66.40, p < .01), and burden from

family support (t ¼ 2.294, df ¼ 129, p < .05). Means are displayed in Table 1.

Burden significantly predicted anxiety (B ¼ 3.888, SE ¼ 1.147, p < .01)

and depression (B ¼ 5.615, SE ¼ 1.299, p < .01) in that those who had greater

burden were also more anxious and depressed. An advantage of structural equation

modeling is that mediation can be tested within the main model. Tests of indirect

paths between relationship quality and anxiety and depression through burden were

conducted. Although neither direct pathway was significant between relationship

quality and anxiety or depression, the specific indirect relationships between rela-

tionship quality and anxiety (B ¼ �1.286, SE ¼ 0.408, p < .01) and relationship

quality and depression (B ¼ �0.891, SE ¼ 0.315, p < .01) showed that burden was a

significant mediator of both variables, such that caregivers with supportive rela-

tionships had less anxiety and depression by way of decreased burden. Finally, we

found a significant positive relationship between anxiety and depression (B ¼ 0.879,

SE ¼ 0.431, p ¼ .041).

Figure 3. Final model with estimated betas and standard errors.

Reblin et al. 675

Discussion

This study’s objectives were first to assess the existence of ambivalent and supportive

caregiver relationships at entry to cancer home hospice as defined using a multi-

dimensional operationalization of relationship quality and second to assess how

caregiver relationship quality affects caregiver burden, anxiety, and depression. This is

the first study to our knowledge that has used the SRI to assess relationship quality at

end of life to parse out supportive versus ambivalent relationships. In our sample, we

found that 31% of caregivers saw their spouse as supportive and 69% saw their partner

as ambivalent. These percentages are similar to previous research assessing relation-

ship quality with the SRI in older adults (Uchino et al., 2013) and confirm that

ambivalence is prevalent in close relationships at end of life. We also found evidence

to conclude that caregivers with supportive relationships reported significantly lower

burden in comparison to caregivers with ambivalent relationships. Although rela-

tionship quality did not significantly predict anxiety and depression in a direct path-

way, we found a significant, indirect relationship in that burden completely mediated

the relationship between relationship quality and these distress measures.

Describing relationship quality at end of life

Our findings taken in combination with other works assessing relationship quality

throughout the adult life span (Campo et al., 2009; Reblin, Uchino, & Smith, 2010;

Uchino et al., 2013) now suggest that both ambivalent and supportive relationships

exist throughout the trajectory of a close relationship. Although other research suggests

that couples increasingly emphasize the positive aspects of relationships over time

(Carstensen, Graff, Levenson, & Gottman, 1995), this does not preclude the coex-

istence of negativity. Previous research suggests that relationship quality within a

particular relationship is relatively stable over time (Campo et al., 2009; Vaughn &

Reblin, 2010); however, most longitudinal research in this area is limited by a short

time lapse of only a few days or months. Future research following couples long-

itudinally over more extensive periods of time is needed to determine how individual

couples’ relationship quality develops. In particular, it will be important to capture

how perceived relationship quality may change through life challenges and impact

roles, interaction patterns, and perceptions relevant to a close relationship. While some

research has found caregivers view their relationships as deepening during this time

(Walker et al., 1990), others find relationships weakening (Lawrence et al., 1998).

Understanding potential change over the developmental trajectory into end of life and

even bereavement has implications for relationship research as well as better under-

standing of the association between relationships and health.

The role of relationship quality in caregiver burden and distress

This study found that caregivers who had greater burden were also more anxious and

depressed and that those caregivers who were more anxious were also more depressed.

This relationship between burden and anxiety and depression in caregivers is

676 Journal of Social and Personal Relationships 33(5)

supported widely throughout the literature (Burton et al., 2012; Cooper, Katona,

Orrell, & Livingston, 2008; Grov, 2005; Price et al., 2010). In other research in

palliative care populations, burden was found to be the most important predictor of

anxiety and depression (Grunfeld et al., 2004).

While there was no direct relationship between relationship quality and anxiety and

depression, there was an indirect relationship completely mediated by caregiver burden.

In comparison to caregivers with ambivalent relationships, caregivers with supportive

relationships reported higher caregiver self-esteem and less burden due to a disrupted

schedule, health problems, and lack of family support, though there was no difference in

financial burden. Those caregivers with lower burden were more likely to have lower

levels of anxiety and depression.

The finding that relationship quality is related to caregiver burden is consistent with

the idea that caregiver burden can be subjective and not necessarily tied to the difficulty

of the task. Perhaps it is for this reason that the most objective type of burden—finan-

cial—was not found to differ between caregivers with supportive and ambivalent rela-

tionships. Although there is some research to support reports of burden being tied to

objectively difficult caregiving situations (Pinquart & Sörensen, 2003), other research

suggests caregiver burden accounts for factors over and above actual tasks (Braun,

Mikulincer, Rydall, Walsh, & Rodin, 2007; Hughes, Giobbie-Hurder, Weaver, Kubal, &

Henderson, 1999). Caregivers may become fatigued from the physical, emotional,

psychosocial, and spiritual strain associated with cancer caregiving (Clark et al., 2014),

which has a direct association with caregiver burden (Jensen & Given, 1993). It is also

not surprising that caregivers who report greater burden are more likely to be anxious and

depressed, as this has been well documented in the literature (e.g., Grov, Fosså, Sørebø,

& Dahl, 2006; Grunfeld et al., 2004; Nijboer et al., 1998).

This study is in line with the previous qualitative research (Snyder, 2000) in which

findings from caregiver interviews showed that despite the presence of objective burden,

caregivers with high-quality relationships experienced less subjective burden. Others

have also found conflict and discord within the relationship, which has been shown to

contribute to reporting greater burden for those households with poorer relationship

quality (Snyder, 2000; Wittenberg-Lyles et al., 2014). Quantitative work has also found

similar results using different assessments of relationships (Spaid & Barusch, 1994;

Steadman, Tremont, & Davis, 2007). However, given the cross-sectional nature of our

study, we are unable to confirm the directionality of our results. Although the model

tested in this study, based on the conceptual stress process model (Pearlin, Mullan,

Semple, & Skaff, 1990), proposed that existing relationship quality impacts caregiver

burden, which then predicts anxiety and depression levels, it is also possible that indi-

viduals who find caregiving more burdensome also increase their negative feelings about

their partner, changing their view of the relationship to ambivalent, and have increased

distress. However, previous research makes this alternative scenario unlikely. Our

research has shown the stability of relationship quality (Campo et al., 2009; Vaughn &

Reblin, 2010). Clyburn, Stones, Hadjistavropoulos, and Tuokko (2000) tested competing

models of the relationships among caregiving stressors, burden, and depression in a large

sample of caregivers of Alzheimer’s patients and found the best fit for the model in

which burden mediated depression.

Reblin et al. 677

Limitation of a single time point

We speculated that there were several reasons why no direct relationship was found

between relationship quality and distress. The first is that this study focused on a

single time point of extreme adjustment distress. Entry into home hospice represented

a time of transition. The caregiver is often just coming to terms with the death of the

patient, navigating both family and health-care systems to set up home-based care

(Schulman-Green et al., 2004; Waldrop, Kramer, Skretny, Milch, & Finn, 2005).

Enrollment into hospice comes on top of the prior stress of caregiving through active

treatment, which often wears down support resources (Bevans & Sternberg, 2012;

Tilden & Weinert, 1987), and before the added support and involvement of the

hospice team. Because our measures captured relationship, distress, and burden

variables only at a single moment in time—entry to home hospice—it is possible that

the acute stress and burden of this transition overshadowed any unique variance from

relationship quality, which may later differentiate over the course of the chronic

stress of continued caregiving. It might also be possible that the anticipated loss of

the relationship makes its quality less important. Future longitudinal research is

needed to determine how relationship quality impacts burden, anxiety, and depression

over the course of the cancer caregiving trajectory—through both the chronic and

acute stressors.

The importance of the broader social context

The caregivers’ broader social context is a second factor that could potentially impact

caregiver burden (Harrison & Cole, 1991; Lai & Thomson, 2011; Sherman, Webster, &

Antonucci, 2013) and thus the findings of this article. Although the spouse is often the

most important member of one’s social network, friendships and other family rela-

tionships are also important predictors of well-being (Antonucci, Lansford, & Akiyama,

2001; Cable, Bartley, Chandola, & Sacker, 2013; de Vries, Utz, Caserta, & Lund, 2014).

Support from the larger social network of friends and family can be particularly

important when the spouse is dying and may serve as a protective buffer in more con-

tentious relationships. Contributions from family and health-care providers cannot be

ignored as most end-of-life decisions and care occur within this context (Haley et al.,

2002; Williams et al., 2008).

Unfortunately, many forms of helpful support often drop-off after an initial influx in

response to an acute stressor (Arora, Finney Rutten, Gustafson, Moser, & Hawkins,

2007), like cancer diagnosis. Further, caregivers may withdraw from their social

networks as they become overwhelmed by their new tasks (Carr, House, Wortman,

Nesse, & Kessler, 2001). Research has shown that a lack of support and resources from

a broader network, including providers, can lead to even greater caregiver burden

(Burton et al., 2012; Francis et al., 2010; Goldstein et al., 2004; Wittenberg-Lyles

et al., 2014). Relationship quality likely plays a role in this context as well. For

instance, recent findings suggest that caregiving in pairs—such as two siblings caring

for a parent, which should reduce caregiver burden—may place individuals at a greater

risk for anxiety and depression (Wittenberg-Lyles, Kruse, Oliver, Demiris, & Petroski,

678 Journal of Social and Personal Relationships 33(5)

2014). This study did not account for relationship quality or existing conflict, which

may explain the counterintuitive results. More research is needed to investigate

advanced cancer caregivers’ wider social networks.

Limitations

This study represents a snapshot of the caregiver experience at hospice enrollment.

Future longitudinal research should investigate the end-of-life experience to deter-

mine how relationship quality and psychological distress change over time, including

into bereavement (Grbich, Parker, & Maddocks, 2001). This research would also

inform the literature about the mechanisms and processes involved. Additionally,

there are a multitude of factors that we were unable to capture, which may also play a

role in the relationships explored in this article, including the patient experience and

the broader social context. The reader should also take into consideration that these

caregiver participants have chosen to participate in research at end of life and therefore

some selection bias may be at play. Finally, although hospice is predominantly used by

non-Hispanic Caucasians (National Hospice and Palliative Care Organization, 2014),

future research should seek to include a more racial and ethnically diverse sample to

determine how best to serve a broader population.

Conclusion

This study represents a first look at relationship quality measured using multiple

dimensions in spouse caregivers at entry to home hospice. We extended the rela-

tionship literature and established the existence of both supportive and ambivalent

types of relationships in spouse caregivers of home hospice patients. We also assessed

the interplay of relationship quality with caregiver burden, anxiety, and depression.

Caregiver–spouse relationship quality significantly predicted caregiver burden, which

mediated the association between relationship quality and anxiety and depression.

This may be a function of the overwhelming impact of burden on these variables in a

situation where often informal support resources have waned and formal hospice

resources have yet to be available. Future research should further investigate sup-

portive and ambivalent relationships as an important factor for caregiving across the

cancer trajectory to end of life. Caregivers whose social contexts place them at risk for

higher levels of distress may benefit from increased clinical attention or intervention.

Acknowledgments

The content is solely the responsibility of the authors and does not necessarily represent the official

views of the American Cancer Society or the National Institutes of Health. The authors would like

to thank the participants who make this research possible.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship,

and/or publication of this article: Research reported in this publication was supported by the Amer-

ican Cancer Society under award number ACS MRSG 13-234-01-PCSM and the National Cancer

Institute of the National Institutes of Health under award number P01CA138317.

Reblin et al. 679

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